The Journey of a Migraineur

Personal Migraine Toolbox

2011-11-30T17:24:00.001-06:00

Before I get to what I use for my migraines, allow me to once again apologize for not posting since September. I have written several posts but haven't published them because I nitpick myself and for me, they were technically difficult to write - as in, I had brain fog while trying to write them and I pushed myself to do it anyway, but all that came out was "HURR DERP DURDY DUR." Well, probably not those words exactly, but I'll revisit those blogs later.

Secondly, I've not had internet access for a couple of weeks. There was NO WAY I was going to write a blog post on my Droid as wordy as I am prone to get.

Thirdly, the AHDA has put out an action alert for a petition that ya'll need to be signing: Urge Congressional hearings on the impact of migraine and headache disorders. These are the points that we went over during 2010's Headache on the Hill event in Washington, D.C. Please sign and forward to your pals! Repost on Facebook or G+!

All right. Now that those things are out of the way, I can continue with my post. I wanted to describe my migraine toolbox, because I just haven't done so yet and it's sometimes important for others to see how you deal with migraine not only on an attack by attack basis, but also on a daily basis. I have migraines 28 days per month, so it takes a lot of dedication and hard work to try and prevent them...And not just by swallowing pills either, as I am learning.

For prevention I am currently taking:
Gabapentin 900MG (anti-epileptic)
Propranolol 40MG (Beta blocker)
Lexapro 10MG (anti-depressant)
B Complex (supplement)
Vitamin D3 1000iu (supplement)
Multivitamin (supplement)
Aspirin 162MG (prevention and for PFO closure devices)

Botox injections - I receive these on a quarterly schedule. My first set worked wonders initially, but the second set did not work as well. I am still scheduled for my third set, and I hope to see improvement again since it worked once already.

For abortives, I take DHE injections with Zofran. Sometimes I am allowed triptans if the DHE and a subsequent round of steroids do not work for a particularly bad cycle. However, I cannot take them all the time due to rebound issues. If I take a triptan I will also use Aleve as triptans amplify my allodynia.

In addition to medications, I have also had to make dietary changes which include abstaining from refined sugars and flours, as well as anything breaded, or any pastas. Earlier in the year I initially lost 25 pounds on what I refer to the "migraineur's Atkins" (with other restrictions on foods that the diet actually OKs per my headache specialist). Somewhere along the way I fell off the wagon a little bit. I haven't gained the weight back, yet, but I have a lot more to lose. Will a healthy weight help my migraines? I don't know, but I know that a healthier diet benefits some of my other health problems as well as lowering my chances for heart attack and stroke. So, I need to work harder in this area now. I also make sure to drink a lot of water. Dehydration can be a huge trigger for some migraineurs. My one weakness is still coffee, though I drink a controlled amount every day around 20 ounces. My meals are also pretty much scheduled because missing one means a migraine too.

Exercise. This is pretty difficult as well, but since the introduction of the Propranolol my migraines have actually eased up a little. They are not as severe and as a result, I have been able to walk and hike more often. There will be times when I will be unable to get exercise, but I still try when I can.

Counseling. I see a therapist once a week. It helps to get everything out to a neutral third party. I am clinically depressed and sometimes have suicidal thoughts, so these appointments help me avert what could otherwise could be a crisis. In response to seeing a counselor, I have a more positive outlook on life. I feel like I can do, instead of simply respond.

Sleep. I practice sleep hygiene. This means I wind down at night at the same time every night, and this now includes taking a hot bath some nights to relieve the pain of fibromyalgia from my back and legs. I take a few sleeping medications and I make sure I go to bed at a consistent time and wake up at a consistent time. If I sleep even a couple of hours past my usual wake up time now, I will trigger into a migraine. I try not to take naps, either, but I will if I am too sick to remain upright.

For attacks that are particularly bad, I will take a Xanax and try to go to sleep with a heating pad and an eye mask, because I am severely photosensitive. I am also using biofeedback. I am less sensitive to scents depending on what kind it is (heavy perfumes and colognes will make me sicker, however), but lavender aromatherapy can sometimes help me relax as well.

Basically, my life revolves around one huge scheduled awareness of what my body is doing at all times, and I see it slowly responding to my efforts. It's not easy, but controlling migraines means that you don't wait for the medication to come to you - while medications can be highly effective, migraine is also about making lifestyle changes that are sometimes very difficult, but also very necessary. These changes might seem overwhelming, or frightening at first, and they didn't happen immediately overnight for me. This has been a year-long process, almost, and it will be far longer before I feel successful.

I have a full toolbox, but it no longer intimidates me.

What Migraine Is, for Those Not Paying Attention

2011-09-08T16:13:00.001-05:00

For this post I am going to try and tackle, again, what migraine is, because some people aren't paying very close attention to the subject when they should be. And no, I am not necessarily talking about everyone in my life, however, there are a few of you who don't quite seem to understand, nor do you even try - though you seem to want to be in on what's going on. This post, admittedly, might come across as passive-aggressive on my part, but after being misunderstood for almost 6 years now while people trounce about asking stupid questions without bothering to read the information that is easily and readily available to them, I think I have a right to feel this way. I'm tired of it. I speak but I am not heard. I am ill, but I am not believed by the people who should count the most. I'm not talking about people I work with, I am not talking about friends, but I am talking about people who are would-be caretakers. And if the casual layperson learns something here today as well, then my job has been only half-way successful, because, yes, there are some people who would be close that need to open up their eyes and look, and learn, and internalize...But on my side right now, there is a greater need for me to be personally understood.

OK, so, since that is out of my system, here we go. Ready?

At its very basic, migraine can be defined as a "genetic neurological disorder," in which trigger events precipitate an attack that is similar in origin in the brain to epileptic attacks. A migraine is not a headache. Let me repeat that so it can sink in. Migraine is NOT a headache. To say migraine is a headache is to be ignorant of the physiological processes behind the disorder - the very thing we are fighting against in our advocacy efforts. It is, however, adequate to say that migraine is a "headache disorder." Migraine is a neurological "storm," if you will, the stages of which can course itself over days' long periods. The initial phase alone, prodrome, can occur 24-72 hours before the second phase, aura. Prodrome can be accompanied by excessive yawning, thirst, food cravings, excessive urination, intense fatigue, and in some cases the opposite - insomnia and a heightened sense of well-being and hyperactivity. Sufferers may notice an increase in neck and shoulder stiffness/pain. Aura generally lasts from 20 minutes to an hour before the third phase, and causes reversible neurological phenomena such as scintillating scotoma and blindness, olfactory hallucinations, auditory hallucinations, numbness and tingling, difficulty speaking/remembering words (aphasia), among many others. The third stage is the head pain stage - the stage most recognized among the general public and the stage from which migraine is mistakenly identified as a "headache." This stage is accompanied by head pain, neck pain, shoulder pain, and in some cases nausea, vomiting and/or diarrhea. Recent studies suggest that neck and shoulder pain is more prominent during this stage than nausea may be. This stage will also be accompanied by one or more of the following: Light sensitivity, olfactory sensitivity, or auditory sensitivity, in that these sensations coming into the sufferer's brain may cause prolonged pain. The final stage of the migraine attack is postdrome, or the refractory phase. During this stage the sufferer may have residual head/neck pain, great fatigue, or again, a sense of well-being and clarity. They might want to sleep for a long time.

A migraineur can skip any one of these stages during an attack. Not all stages must be present on order to have a migraine. A migraine attack can proceed without the pain phase, in which is is termed silent, or aphasic migraine. A migraineur who has aura is considered rare - about 3-5% of the overall migraine population, which, in the United States alone, extends into the 37 millions. It is important to note that not everyone who has a headache is having a migraine.

For the sake of space, I will not be pursuing migraine variants in this article.

Migraine attacks are the result of the interplay between several different systems - genetic predisposition, environment, and other biological factors which we are just coming to understand. A migraine attack is the result of the over-stimulation of the nerves of the brain in the individual predisposed to migraine through genetics. An individual with migraine has a central nervous system that is highly attuned to change in the environment and the brain may perceive change on a level far below and easier than that of an individual not predisposed to migraine. The brain may also perceive this change before the individual is even consciously aware of it. In my case, my brain perceives the light spectrum much differently than those around me - one like me does not have to be consciously aware of a flickering light bulb in order for the brain to pick the message up and send it along neural pathways that will, in turn, influence a migraine attack. Most of us are highly attuned to our triggers, however, so we know what to avoid if we can. The migraine brain is also resistant to change - the slightest change in sleep schedule or eating schedule may throw the body into an attack. The migraine brain is also susceptible to stress - though there are arguments on whether stress itself is a trigger event or something which lowers the threshold to other triggers, such as it does with a virus.

Migraine is not a response to repressed emotional feelings, though it is linked to clinical depression, anxiety, and Bipolar Disorder. The appearance of migraine may also signal cues as to the physical health of the sufferer as well - the migraine population is at higher risk for heart disease, strokes, Factor-V Leiden, diabetes, and co-morbidities such as chronic pain syndromes like fibromyalgia, and a host of auto-immune disorders. In some individuals, such as myself, migraine with aura may suggest a common heart defect called a Patent Foramen Ovale (PFO).

For some few, lucky individuals (chronic sufferers), migraine may be a progressive brain disease. Silent infarcts, similar as can be seen on stroke or MS victims, may show up during MRI examinations. Current studies do not suggest that these infarcts cause any external or internal signs of lasting damage, but it can be scary to know they are there nonetheless.

Chronic, intractable migraine is often seen as a "learned" behavior for those of us who are lucky enough to suffer on a near-daily basis. Once the migraine brain goes chronic, it can be very difficult to slow those over-excited neurons down back to the nature of having episodic attacks. The brain is "plastic", and as with any repetitive task in which practice sustains the skill, such as reading, math, drawing, programming, etc., it "learns" the behavior of migraine as the new "normal" and becomes even more hyper-sensitized to the environment around it, making it easier to trigger into the next attack. One attack piggybacks to the beginning of the next attack with very short or non-existent refractory phases. In these cases, is necessary for the sufferer to treat the attacks with daily preventive medications as well as treat the individual attacks with an abortive. However, rebound migraines may occur as a result of overuse of these abortive treatments, so it is not suggested to take more than 2-3 of these medications per week and to avoid over-the-counter medications such as Excedrin, Aleve, acetaminophen, etc, which is why it is important for the chronic sufferer to seek a knowledgeable doctor who will listen and treat the attacks appropriately, sometimes incorporating other treatment avenues as well, including alternative therapies, physical therapy, medicinal therapies, etc. The downside to treating chronic migraine is that we all want an immediate cessation of migraine, but it can take years to find the right combination of medications in order to knock the attacks back to episodic status because not every migraineur responds to the same treatments in the same way and it's a "guess and go" puzzle. Generally the problem here is that people who have gone chronic have probably left their migraines professionally untreated for years (mistakenly thinking they are just having "headaches" and treating with OTCs multiple times weekly or even daily), so the brain is stubborn in that it wants to keep on doing what it's done so well for so long - trigger into migraine attacks that are debilitating and reduce the quality of life of the sufferer. Isn't it nice to know your chronic, migraine brain is very skilled at migraine?

In order to see how powerfully migraine affects the sufferer's quality of life, I urge you again to read Kelly's ongoing suicide series this week, and get a sense of how invisible illnesses can harm an individual, even if they have a strong support system: Fly With Hope.

Thus concludes my newest post on general information about migraine. Pretty soon I'll link up some articles and journals with my information. I just wanted to get this pounded out (HA!) and put up.

National Suicide Prevention Week and Chronic Illnesses

2011-09-06T16:33:00.002-05:00

It's National Suicide Prevention Week. My lovely friend, Kelly, is writing a continuing series on her blog about living with chronic illness and suicide. Please visit her blog to read the stories of people who are living every day with chronic illnesses and the thought that it might be better just to get away from everything: Fly With Hope. I hope you'll read her words and the messages that she is conveying from others who feel the same - that we want to live, but the burden is sometimes just too great to keep a handle on. As always, if you feel that you need to speak with someone in the case that you are feeling suicidal, contact the National Suicide Prevention Lifeline.

As for my part, I feel free to inform everyone that I am going to seek counseling again. I am not necessarily looking for anti-depressant help, but there are many problems in my life right now that I think I need to work out with someone who is objective. I have been in that seat before - it is nothing new to me - however I dread looking for and starting over with someone new.

This has been a particularly rough week for me. Thanks to my migraine diary, I can see that the vast majority of my migraines are now hormonally-triggered. While the Botox is helping me, I am still suffering for most of these days. I thought I was fatigued before! The downside to Botox is that my migraines now have a distinct beginning and end, prodrome and postdrome, so I am experiencing fatigue the likes of which I don't think I have encountered before. I just want to sleep for days. But I have to work, so I plod on in, do my job, and get out.

I cannot take birth control. I have a PFO which has been closed twice, and I have migraines with aura. So I am a stroke risk, even though I take blood-thinning therapies. Otherwise, I'd be more than happy to take the pill all year round if I were allowed to do so. I also cannot have a hysterectomy - that was directly contraindicated for the control of hormonal migraines during Dr. Brandes' speech at the National Headache Foundations' June conference in Chicago, much to my chagrin. My only hope is that this second round of Botox will clean things up for me even more. But I'm going to go mad here pretty soon if it doesn't. However, my next Botox appointment is for September 27th, and I know that will be upon me before I know it.

I just wish I could rid myself of the fatigue. Then I could cope just a little bit better. I am not doing so well myself - the depression is so overwhelming even I am having a difficult time writing or finding joy right now.

Away! And some Botox, too.

2011-08-30T15:47:00.003-05:00

Hi all, sorry I haven't been at it lately. I don't think I mentioned it in any previous posts, but in late June I had Botox injections to help me control my current intractable migraine. I was prepared for the worst, actually - I think we all are in a situation like Botox, where you receive 31 shots in one sitting (into sore, tender points throughout your face, temples, neck, and shoulders) and the majority of patients receiving these injections report back that after the injections they trigger into one of the worst migraines they can remember having. I sailed through the injections (getting piercings and tattoos kind of prepares you for this situation, even though I usually get both for fun and not medical reasons - who knew?), and afterwards I worriedly asked about the potential for migraine because I had a 4-hour drive home ahead of me (with my lovely mother-in-law helping me, of course). My specialist gave me an anti-emetic (I'm not sure which one, probably Zofran), and a Toradol injection, and I was free to start my journey home.

The next day I had considerable muscle pain, but nothing more than that. The day after that - nothing. No migraine. No head pain of any kind. Silence. Merciful silence.

I panicked, I really did. I Googled the heck out of Botox for migraine, and finally, after sifting through the countless news articles on just how much it helped migraine sufferers, I found an article about how a few people got immediate relief from the injections, and no migraine afterwards. Well, I always knew I was the weird one, but this relieved me. Not so weird this time! Hah! Still in the minority, though. It's funny how no migraineur does anything by the so-called migraine "book." I am glad that the terrific specialists in this area of health recognize that and work so hard at dispelling myths and the "standard" protocol treatments for their patients. There are no "standards" for these types of chronic pain patients whatsoever. Each of us is a puzzle to be unlocked.

I am still having breakthrough migraines, however, and I was advised on this by my doctor. However, I had such an overwhelmingly great response right off the bat to Botox that I'm hoping the next set, which is supposed to build on the first, will help me even further. I am still experiencing terrible menstrual migraines, but the Botox is helping them to some degree. They respond to medication now, when they didn't before, or the medication would work for a couple of hours and fizzle out.

Unfortunately, later in July my mother had her beloved Miniature Schnauzer, Gabby, put down. I went with her, as I loved the dog as much as I loved anyone else. I am still maneuvering around a broken heart, but it gets easier everyday. Gabs had diabetes, which is common in Mini-Schnauzs, but I also lost my best friend and Miniature Schnauzer Sassy at the same age - 9 - to kidney failure likely caused by undiagnosed diabetes as well. Gabby fought against the diabetes hard for about a year and a half, but she had a stroke eventually and not only was she already blind, but she also lost her hearing. So she had no joy in life, so we set her free. It's still so painful to think about, let alone write about. Of course, the stress of this set off a chain of migraines, but there are some things you cannot avoid.

I have also started a new blog based on my favorite movie, The Fifth Element. It can be found here: Leeloo's The Fifth Element Repository. I am thinking about writing an unofficial guide to the film, based off of the decade-plus research and fanaticism I have devoted to this hilarious, colorful, quaint little film based on the idea that love conquers all. Writing a book might take some time, though, but I look forward to seeing just how brave I am to actually take this on as a project. I'd originally envisioned a website, but the blog kind of changed my mind. And it's fun for me to work on, too - The Fifth Element is definitely one of my more favored things in life (thank you Luc Besson!!!).

Not only that, I have been drawing again as well. I usually crank out a couple of pieces a year, if I'm up to it, but this past August alone I put out two works and I'm in the process of setting up another couple of pieces.

I am also writing for a new migraine project, and you can visit it here: Teri Robert's Migraine Warriors. She is currently collecting stories for this ongoing project. Please visit the site and see how you might be able to contribute too! We want the world to see what migraine really is.

So I have a lot on my plate right now, actually, thanks to Botox...And I am accomplishing things. So that's good - very good, and I am glad to see a positive spin on one of my posts for once. For once, I have hope. I still have dark days too, but I can see life again. Real life.

Two Blogs You Should be Reading...

2011-07-19T20:06:00.002-05:00

Two of my very strong, very awesome Migraine friends have posted blogs this week concerning Migraines and suicide. I implore you to please take a look at them and use them to facilitate conversations.

Kelly's can be found here: Migraine and Suicide

Jaime's is here: Migraine and Suicide

We are all using the same title, and, well, what could be better? There's no dancing around the topic, frankly. Let us discuss these issues so that Migraineurs may have a safe haven to go to if they feel as if there is no end to what they are experiencing.

If you would like to write a blog about Migraine and suicide, please note myself or Kelly so that we can add your blog to ours. The more, the better we all are.

Migraine and Suicide II

2011-07-11T18:57:00.008-05:00

“I want to live, I just don't want to live like this.”

The stigma of suicide is rampant in our society. Mention it to most anyone and the general reaction is, “It's selfish. Do those people think about the loved ones they've left behind to grieve?”

I approached the subject of suicide in a SharePost on MMC, oddly enough on both my husband's and mother's birthday in 2008, located here: Migraine and Suicide

The reactions to the post were overwhelming, and even 3 years later generate some comments. Recently, on my list of “what I've learned from having chronic migraines” post, I included a suicide mention at the end of the list. In this post, I hope to further address what I meant by that short blurb as well as broach a subject that most Americans find taboo.

A private discussion with a fellow migraineur (and someone I consider a very well-spoken and thoughtful individual, with a heart that is certainly too big for her own body), Kelly, is really what prompted me to write more in-depth about this issue. So with permission from her, I'm going to tackle this subject through her words and viewpoint as well as my own. Our thoughts sync up so perfectly on this subject, that I'm left wondering how many other people feel the same, but are afraid to speak up about it for fear that they will be mistaken for an outcast, or worse.

Kelly summed it up perfectly when she wrote to me. “I want to live, but I don't want to live like this. Why would people be want to be so selfish as to keep me around while I am suffering so profoundly?” Selfishness is often the most visceral reason against suicide from the outsider, but they often do not understand how profoundly the chronic pain sufferer is, well, suffering.

I find myself wondering the same, too. I know there are a lot of reasons why committing suicide is so painful to think about on the other side of the fence, and love plays a huge role in those thoughts. We don't want to lose anyone we know and care about deeply, but as humans, we all die. It's just a matter of when, and not so much the how. But for chronic pain sufferers, the why is often the most important factor. People commit suicide for a variety of reasons, and I can't say that I judge them for doing so. It's their choice to make, and only theirs.

Chronic pain takes away quality of life, often gradually, but it's also profound. I don't like to pussyfoot around any more, and I won't lie to myself or anyone that having chronic Migraine makes me want to kill myself. There. I said it. Having chronic Migraine makes me want to kill myself. I also have an auto-immune disorder, and Fibromyalgia. I have had some very bad days, and very few good days. I've often had to rely on certain individuals to get me where I need to go, and most especially I rely on a husband who works 40+ hours a week and is often exhausted when he comes home. It's hard for him to take care of me too. Often I feel, honestly, that if I could just remove myself from life altogether, that everyone would be better off. I'm honest about these feelings with those I am close to in life, but I'm also often reassured that life would not, indeed, be better off without me. But it is hard starting each new day in old pain, the signals in my brain a jumble, my body aching, and needing to immediately reach for a needle to inject myself with medication just so that I can drag myself to work. Then, I come home from work and struggle not to fall asleep because naps are a Migraine trigger, and yet at bedtime I must take a handful of pills just to be able to sleep throughout the entire night without waking. Repeat, ad nauseum. There is a certain spectra of ignorance when an individual states they want to die - which should be met with patience and an attempt to understand the situation better, instead of a complete meltdown of biases against suicide and a "me me me my feelings" attitude. This situation is not about you, it's about the individual suffering.

That being said, it's hard to do. I've been on the other end recently myself, though I will not share details. We're all guilty of jumping to assumptions.

Bipolar spectrum disorders run in my family. I have been diagnosed with clinical depression. When I wrote that sharepost in 2008, I'd been on several anti-depressants by then, and I still had more to swap to after that. In March of this year, my husband and I had been facing seemingly insurmountable odds as far as finances go, and I'd just been swapped to a new anti-depressant because the other had stopped working after two years of success. It no longer controlled my anxiety. In any case, one Sunday over a particularly difficult menstrual cycle as far as Migraines go, I had a manic episode that was, in all actuality, caused by the new medications. The next day I was in supreme pain, and I'd decided I was going to go home from work and kill myself. I called my mom to tell her my intentions, and she came over to my home to take me to psychiatric admissions, and yes, I'd plotted out my suicide. However, thanks to Migraine (oddly enough), I was out of the hospital within 36 hours and resting at home, where the severe Migraine finally broke and life seemed a little clearer to me. My medications were dropped. I never heard from my psychiatrist ever again and that's a mixed blessing. I no longer take anti-depressants of any kind, and while I will continue to shun them for a time, there may come a moment when I need them again. I don't look down in people who need them or take them either; but for me, I needed a break, and at this time, I do not need them.

The thing is, no one addresses these issues in response to chronic pain sufferers. We often talk about how this part of the population slips through the cracks as far as research, education, and treatments go, but rarely is suicide or the thought of intentions broached. We all know the phrase “if someone wants to kill themselves, they will find a way to do it,” but from a chronic pain standpoint, Kelly's adage of “I want to live, I just don't want to live like this” fits squarely between life and death. Chronic pain patients often don't have a disease that will kill them outright, but they are living on the precipice, having seen the next day on one hand and peace on the other. We have all heard about the athlete, the actress, the writer, the most active and positive individuals living with chronic illnesses and their strength to overcome, so why shouldn't the rest of us? The reality is, those spare individuals who live in that fashion are just that, the rare ones. They don't cover the rest of us, but they serve to give us hope. Unfortunately, hope is not enough for some sufferers. But peace is, and the best thing any one person can do when a friend, lover, or child has ended their life is to say, “they are at peace.” Not “why did they leave me?”

With these thoughts written down finally, there is always help if an individual needs it and is willing to take it. Talking to a support group, a trusted medical professional, using an online forum to connect, or other social media are all ways in which we can support one another and keep going to the next day. Passing information through the chain of contacts we have is important, which is something I will be striving to do myself more as this blog progresses. But I also prefer to write on my own topics because while information is important, so is knowing that there is someone, somewhere, who understands what you are going through, and to whom you might be able to relate. One of my favorite parts of volunteering at the NHF conferences this summer were the opportunities to hear others' stories of migraine while I checked them in for the lectures. This might not be the most progressive way of moving people through the lines, but these people want to be heard and above all, they want to be understood that what they are living with is very real, and very frightening to themselves and the people they also live with. The disease has the same name: Migraine, but the individual stories are as different as the star patterns in the sky, and each one is as new to me as if I'd never heard of Migraine before, or experienced it firsthand.

Before I close, I'd like to make a final point. It's OK to be on medication to treat depression. There is a great stigma as well in the world that someone with depression is just not happy enough, positive enough, or is not thankful for the things they have in their life. Depression is as real a disease as Migraine is, and it has nothing to do with not realizing how good your life truly is. People with depression know how good life is to them, and they don't take their relationships or material items for granted. Depression is an inability to function from day-to-day due to a chemical problem in the brain, and often lasts longer than situational depression (that thing you feel when you break up with someone after having dated 6 months, for just one example). Just as individuals with Migraine don't want it, people with clinical depression also don't want to feel the way they do, but they often cannot control it without medical assistance of some sort. There is no shame in seeking help, and it's my wish for everyone who feels the lowest of the low that if they do one thing in a day, it's to pick up the phone and call for help, and to most of all, not give up if it doesn't work the first day. Change takes time, so much time. There is no quick path to happiness, and I truly don't think anyone is 100% happy in life for any number of reasons. But there is always room for improvement, and it always starts by connecting to people who are ready and eager to listen to your story and take you into their hearts.

If there is someone you love (this includes yourself), that you know who may need help, please consider contacting the following: National Suicide Prevention Lifeline

The Disparity in Attention for Headache Disorders?

2011-07-04T21:49:00.008-05:00

My friend and patient advocate, Bray Patrick-Lake (also President and CEO of The PFO Research Foundation), wrote the following article for the AHDA's HeadNotes, a blog of sorts for members of the AHDA: Why the Disparity in Attention and Support of Migraine and Headache Disorders? (It's a very good article, please go read it!)

Why, indeed? My personal experience over the past 5 years has been thus: when confronted with information and the truth about Migraine disease, people, most especially - those non-empowered patients - get angry. I recently left a Migraine-based "support" group because of the complaining within, and the lack of listening that the sufferers were doing. Should I have left that group? Should I have continued using my time entreating those not willing to listen to me that they needed to look to the next day with positivity and hope? Should I have continued to urge particular members to get counseling? How do you stand up to someone who screams at you over a virtual messenger that "you don't live my life so you don't get it", when in fact, I do get it because I also live that life? I mean, the particulars of my life are not the same as others', but I also live a life with chronic Migraine that is also filled with its own particular conundrums and stressors. So yes, I do get it. Life is hard. Don't ever walk on anyone else, even though it's so easy to do on the internet.

Did I give up on these individuals too easily? When faced with a post that is radically different in viewpoint, i.e., "we have Migraine because of Eve's curse and the Biblical standard that women will suffer throughout time and their own lives because she ate from that tree", do you let it go or do you stand up and say, "that's kind of funny, considering men get Migraines too." In my opinion, I did not give up. One can say whatever they want however long, but some people, including sufferers, are not going to listen. You would be, to take a familiar phrase, talking until you are blue in the face. So what do we do?

When confronted by the suggestion that one might, for instance, donate money to particular organizations, sufferers get defensive. I'm one of those sufferers and I will honestly admit it. I get upset being asked for money because in my mind, I am paying for many medications and I am trying to keep my home. My monthly budget is very tight, especially so since I now make regular 4-hour trips to see my Migraine specialist and I cannot work full-time. Many other sufferers are on disability, or have lost their jobs, and who are barely scraping by...is it fair to ask these individuals to donate money when they are barely keeping their heads above water and their reality is not one of financial freedom? I'm conflicted on this point. I'm at the point in this year where I can begin to donate to organizations again, but in March, I was not in any position whatsoever to do so. I have donated, thrice since I have been able to get back on my feet, and I will be donating again and again as I can. But I understand that many people do not have the funds to donate, and I cannot say with any certainty that I can lay blame at their feet. Are there other ways for sufferers to contribute? Absolutely. Two weeks after being hospitalized for suicidal thoughts I was giving my time as a volunteer at one of the NHF's conferences. After that, I participated in the Headache on the Hill event. More recently, I again volunteered at a NHF event. If a sufferer cannot donate time or money, there is always the option of educating the public-at-large, by joining one of the many truly wonderful, informational websites I have listed to the side of my blog, and educating oneself in order to pass the information along.

That being said, I am not the only one in my social circle who suffers from Migraines and other headaches. However, I seem to be the only one who has a vested interest in the topic and in advocacy. Some people simply do not respond to advocacy efforts because Migraine is a tiny part of their life. They might have one Migraine a month, or maybe three. They might lose a few days here and there, but other than that, Migraine means nothing to them. They do not need to worry about prescription medications because they may be able to manage their Migraines with an Excedrin and a Coke, or they've discovered that their triggers are wholly manageable. If there are 37 million migraineurs in the United States, how many of these individuals are chronic and how many of them have a migraine once a year to once or twice a month? There is a huge difference between the chronic migraineur and the episodic one, and if Migraine is not a huge disruptor to one's life, then one is less likely to champion the cause. What we hear on the internet and the forums are people who are suffering almost daily. We hear sometimes of the individuals who have their migraines under control, but we almost never hear from the people who experience Migraine rarely, and those who we do hear from? They sometimes ask why the chronic sufferers won't just take an Excedrin and stop worrying about it, or they blame the sufferer or they dispense advice that is unacceptable because they are uninformed. Some will offer sympathy. But none of them, and I mean none of them, will support or encourage advocacy for their fellow migraineurs. It makes me at once angry, yet understanding. Please, let us not even talk of the individuals who do not suffer Migraine yet see it everyday - employers, friends, family members - who will not lift a finger to help their kin, much less an organization dedicated to improving lives of sufferers.

Also important to the cause of Migraine is signing up for the AHDA's email alerts. These alerts are not often, and they expire quickly, but when prompted, the email recipient signs their name to an alert which is then passed on to the Representatives and Senators of said recipient's state. I did not sign the last one, I'll admit that. I do not remember receiving the email or it slipped past me unnoticed. It went by that quickly. Which is a reminder, I will have to sign up using the one email account I get notices for immediately since it is now linked to my Droid phone. Sometimes I am discouraged by signing and sending off an alert to others whom I know won't sign it. I try, but get told "no, I didn't sign it, I was busy" when I ask them if they received it. Well, me too, but I found time to send previous alerts. I'm ashamed I didn't sign the last one.

Another problem I would like to point out is the lack of guidance within the Migraine community, and I may come under fire for my opinion, but I am going to be honest and I'm not terribly concerned with having an unpopular opinion here (which I hardly, if ever, am). I try my best at educating and advocacy, but there are hardly any individuals openly and warmly fostering care or support for those individuals who are willing to put forth time and effort. And by care and support, I don't mean pity or directions to turn to because someone is suffering a disease. What I mean, is that we should be supporting each other in this effort, fostering and nurturing the ideas and information towards one another and the community of sufferers we are trying to reach. Too many times I have seen one of us standing on our own, lacking guidance, with no group cohesiveness and no room for personal growth as an individual with differing opinions. What I have seen and received as well plenty of times is a lack of regards to the other advocate's efforts. If we cannot foster a healthy, mutually rewarding, educational and guided environment within the Migraine advocacy effort, then how are we ever going to convince other people that our cause is worthwhile? No matter how big the contribution or the time devoted to the issue of Migraine, we are all important in the fight. It is not just one individual's mission, it is millions of individuals' mission. We must build our bridges together, even if we are coming at each other from different angles.

A Quick Note

2011-06-02T15:46:00.002-05:00

Hi all! I plan on returning to blogging soon. I have been quiet because I was in an intensive migraine treatment program at Dr. Roger Cady's Headache Care Center from the 22nd-the 27th of May. I returned home to a day to recover from the trip and then back to my day job. I was then off another few days because I went to Washington, DC for the AHDA's Headache on the Hill event, where 70 patients and doctors petitioned the House and Senate for hearings on the need for new and more innovative medications for the treatment of migraine. Tomorrow I return to my day job again.

So, things have been pretty busy over the past two weeks. I have a few articles in the works and I hope to be able to finish them up and post them soon. Upcoming topics are migraine and body modification, the stigma of suicide, my experiences with Dr. Cady's team in Springfield, MO (very positive), and a summary of the Washington trip.

So, stick with me, I'll be posting soon I hope!

What I've Learned From Having Chronic Migraine - for Better or for Worse

2011-05-09T20:49:00.009-05:00

1. Migraineurs will do anything, anything, to get control of their brains back, even if it sounds stupid and unlikely to help. We're desperate for help. We're oftentimes suckers, too.

2. Having pets doesn't cure your migraine disease, but it helps to have a furry friend to cuddle and shed tears on from time to time. Also, research shows that having pets helps to lower blood pressure - yours, and theirs, by petting. The Healthy Benefits of Pets

3. The only people who are going to understand you completely are those also living with chronic illness. Caretakers included.

4. You'll discover who your true friends are, when they try to understand and educate themselves on your disorder as well, and offer an ear instead of medical advice that they are not qualified to give, nor have done the research on as well as you probably have.

5. Some days it's going to be all about your disease's control over you, not the other way around.

6. Other people are going to get tired of hearing about it, but you must first and foremost be your own advocate. Don't expect others to leap to your defense, especially employers. However, patient advocates can and will help you in your time of need, if you're too tired or confused to pursue other avenues.

7. You haven't run out of options. You're just tired of being disappointed by the previous options that failed you. If a doctor tells you that you're out of options, it's easy to believe it. After all, we pay them for their expertise even when ours might be greater. Sometimes we benefit from resources we can stand on to reassure ourselves and to prove to others that yes there is too something else to try even if a doctor tells us it's Topamax and Imitrex or nothing. (Thank yous to Parin for the addendum!)

8. It's easy to feel angry when your body makes you feel like you've been on a 15 day bender, but remember that other people have to put up with you too. Expecting people to fairly (note, I said fairly) accommodate you when you're at your worst is reasonable, so extend some of that courtesy back to those who have to pick up your slack if you need to miss work or other functions. I know this is hard to do, it's a personal struggle of my own.

9. Your spouse is a person too. He/she has needs, wants, and dreams of their own. Don't neglect them, and recognize that they are their own self and listen to them.

10. Some days you have to negotiate, not only with yourself, but with your spouse, too. Marriage is kind of like that, anyway.

11. Don't take on more than you can handle in any given day. If you are feeling fine, set up one or two tasks that you can reasonably finish without aggravating your condition or setting off an attack. If you find another task on your list after those, try it out and see if you can go for it. Unless you really need clean underwear today, that laundry isn't going anywhere, and neither are the dishes.

12. You're going to disappoint some people. It happens. Let go, forgive yourself, and move on if you have to. Your disease is not your fault, and if someone truly loves you they won't harbor resentment.

13. Naps are apparently for people who don't have a sleep trigger, and a rigid sleep schedule really does help...But it's a risk some of us are willing to take, especially if it means cuddles with sleepy cats. But in the event of an attack, get that rest!

14. When your bathroom looks like your local pharmacy, it's OK to laugh at yourself.

15. Your cats are going to sit next to you while your head is bent over the toilet whether you like it or not. And the closer they are to you, the better, in their opinion.

16. Research everything you possibly can, and recognize that not everything you read is going to be solid or truthful, or realistic for everyone with the same disease. Learn that there is a lot of bad information out there, and some of it is going to come from people who are also migraineurs.

17. Not everyone responds to the same triggers, medications, or other therapies. Migraine is not a cookie-cutter disease, which is why we try everything. Some people can stop drinking soda and their migraines may go away, while others need soda to help relieve a migraine. Some people can take naproxen or excedrin to relieve their migraine, while others cannot take it in fear of rebound, or Medication Overuse Headache.

18. Migraineurs have been falsely accused of having "histrionic" personalities, and we've been told that we need to "slow down" or "relax". If they had chronic migraine on a waffling pain scale of 7-10/10, they'd freak out too, and perhaps would not be so quick to judge. It's hard to do, but understand that they don't understand.

19. Medications are going to mess with you, but it's important to note that it can sometimes take up to 3 months before one knows whether that medication is right for chronic treatment purposes. But know yourself and your limits, what you might be able to put up with is not what someone else would. Make sure you know what you're taking and what it might interact with. We all make mistakes. I'll never take Xanax with Keppra again.

20. It's OK to think about killing yourself, we all do it from time to time (it's a normal human thought process, yet for the majority of people, it's brief and harmless). But migraine takes you to the brink of madness and then yanks you back again, constantly removing you from your comfort zone and pushing your boundaries of what is considered "normal" behavior in the face of disease. If you suspect you have depression, don't be afraid to ask questions or seek help whether it's from a psychiatrist, a counselor, or an online community of like individuals.

Migraine Doesn't Just Impact Your Head

2011-04-23T20:05:00.006-05:00

Just an FYI, I am importing this article to Facebook too, in the hopes that I might get more blog hits as well. This will not occur for every one of my posts, it's just that I thought this particular thing needed to be said on FB too.

I haven't posted about the NHF Conference in a while as I had anticipated to do; there are many deeply personal things going on in my household right now to worry about the blog and reporting on the NHF's conference, so I hope the NHF will forgive me in that respect.

My migraines are pretty much ceaseless right now. I was on a prednisone taper back for a couple of weeks and it had a rather decent impact on my pain levels, but it did not do what I had anticipated it would, which is to say, break my cycle of terrible migraines. I was going on a pretty decent record at work in regards to not calling in, but the past few weeks have seen me in the hospital because I wanted to kill myself, not to mention several call-ins or early leavings. I had many factors that contributed to that feeling, those being that 1) I had swapped to a pyschiatric medication that caused a full-blown manic episode one Sunday, and 2) I was on my period and my menstrual migraines, particularly at the end of my cycle, are by far the worst I experience at any given time. And then there is 3), an undisclosed issue that I will not get into at this time. There are individuals who know what's going on, and that's fine, but I will not disclose on my blog or facebook at this time, if ever. In any case, all of these played into my desire to commit suicide in mid-March.

You see, migraine disease does not just cause pounding headaches, sensitivity to light and sound, nausea, or vomiting, vision problems, stroke-like symptoms, or any or none of the above. This is why we do not like the term "migraine headache" for a systematic-impacting--disorder. People without migraine think it just impacts your cranium, because that is what migraine is most notorious for, the head pain phase. And trust me, that's terrible in and of itself. But what makes migraine a system-wide problem are its other symptoms. You cannot see the headpain, and you might not understand that neck and shoulder pain accompany migraine pain more often than nausea, vomiting, or diarrhea do. You don't understand that light hurts the eyes, and every sound or smell is amplified regardless of how bad your headpain might be. These sounds or smells might be pleasant on a normal day, but on migraine days you want to claw the offender's eyes out, or at least say some few choice words along the lines of, "How 'bout you NOT empty the entire bottle on yourself next time, asshole? Even non-migraineurs are backing away from you." Sometimes even a whiff of someone's deoderant makes me want to toss my cookies. Now you might be thinking, deoderant, really, you can smell that? Why yes, Jack, I CAN smell your deoderant, thankyouverymuch.

Then there's the skin pain. Allodynia often accompanies a migraine attack, and it may generally be present outside of a migraine attack too. Personally, I carry the burden of painful skin everywhere I go, regardless of a migraine attack.

Migraine also impacts depression. Those who carry the burden of migraine disease often deal likewise with the stigma of depression or Bi-Polar Disorder. If you have Depression or Bi-Polar, your chance of having migraine as a comorbid disorder rises significantly. Anxiety is a huge player in migraine with depression as well. Migraineurs have long since been seen as individuals with a histrionic personality (something we are working hard to get away from as it's not true), but it is easy to see why an attack would cause an upswing in anxiety for the sufferer. We are constantly negotiating our next attack. We are scared to death this might be the one that makes us crawl into bed, miss work, and sink us into a depression that only we ourselves can talk ourselves out of. Migraine takes the most capable, the brightest, and the most talented, and it reduces us into nothingness; a simpering pile of worthlessness because in one attack, it can take away a day's pay, it can cause us to miss a child's school function (or just miss their day in general), or it can make us cancel plans we were holding onto so dearly as we looked forward to getting out into the world on a day we were hoping we just might feel a little bit better. Imagine having the flu about 300 days out of the year, and you might be able to begin to imagine the world a chronic migraineur (or anyone with a chronic illness! Not just migraine.) lives in. While you complain about your week-long head cold (an inconvenience and massive suckitude it might be), it really doesn't compare and yes, I can be a mean bitch and roll my eyes at your complaint. In fact, I always do. You know why? Because you, my friend that I DO love even as a roll my eyes at you, you will get better. Please read that again. You will get better.

For chronic sufferers, migraine is not a 2-day event in a 30-day month. It is a 15-day plus extravaganza, but it lacks party favors of any kind, unless you count the medications we're supposed to take to kill the attack, which are rife with side-effects of their own. I tolerate triptans of any sort rather well, but they exacerbate my allodynia, and on top of it, give me joint and muscle pain. Somedays I walk funny because I feel like my right hip is going to fall off. I've already had surgery on my left foot, so secretly I feel like acting out The Hunchback of Notre Dame. You can call me Quasimodo. Triptans also make me very sleepy, and I tend to take Xanax with my medications because it relieves my neck and shoulder problems. On top of it, if I want to avoid some of the triptan-induced pain, I have to take Aleve with it, so in one day I am already in medication-overuse hell. And what does MO do to an indivudal with migraine? It depletes the serotonin in your system, making it easier to trigger into yet another migraine.

Chronic migraine beats you down. It's a circus of a disease that impacts the chemicals in your brain and your body, taking you through hallucinations, euphoria, anger, madness, depression, and exhaustion. It's a nightmare merry-go-round that you cannot get off of. It's years of experimentations with combinations of medications that you have to try for months before you know they will work, and in the meantime, you have to fight your insurance to pay for them, you have to deal with side effects that you never knew existed, and while your body tries to come to grips with these changes you might still have to call in for work- if not for migraine- then because your medication has you glued to the bed, incapacitated and unable to mumble anything else to your employer other than, "Can't work, I'm dead. Might be alive tomorrow, dunno yet." *click*

People with migraine want to be useful to their employers and their families. I generally look forward to working because it gets me out of my house (though I love to be there too) and it keeps me connected with people. When I call in or have to leave early, I panic, because I hate that I have to do that. Migraine makes me feel bad, but it makes me feel worse knowing I have to leave a job that's so easy to do. But it is a physical job, so once that pounding kicks in, moving around is a complete bitch to deal with.

But, one of my managers says trained monkeys could do our jobs. Maybe I will get a monkey, name it Heather, and send it to work when I can't. Don't pay her in bananas, though, I have bills to pay.

And that, my friends, is difficult to do when you are sick, when your very livelihood is on the line. Migraine is not just physical- it impacts businesses, family, school, finances, possessions, and driving with a migraine can even get you a DUI if you aren't careful (even if you haven't taken your meds yet).

So forgive my anger when it is you don't understand what it is I am going through (and many others like myself), and you tell me that you do. You have no idea what I am doing to survive. It's my right to life, and it is my right to be tired of it from time to time. But it is not your right to tell me what is wrong with me and what I am and am not capable of doing on a day-to-day basis. I assure you, I am pro-active about my situation. Unfortunately, some days migraine causes me to loathe myself as well.

NHF Conference Part II, Physician Lectures: Dr. Schwedt

2011-04-01T18:13:00.008-05:00

It's likely my NHF Conference review will be broken down into several parts, so if you are reading, please be patient. I am in Status Migraine and have called in sick to work twice this week, and one of those days was this morning. I woke to terrible vertigo and pain and knew I just couldn't do it. No matter what my employers may think, I beat myself up every time I call into work, and I had a good cry this morning about calling in. My job can be hectic, but it's quite easy all at the same time. But this week, I have just been beat down by migraine. My husband also stayed home from his job to take care of me. I called to get a steroid pack, so I am now on a taper that I hope will break this mad cycle. Of course, any of you that have been in Status before understands steroid profiles, so I'm not sure I am too happy about the mood swings and the loss of sleep that may be forthcoming...Ofttimes you must trade one uncomfortable situation for another.

In any case, I have the slightest hum of migraine in the background, so I feel I can move forward with some writing. Oh writing! How I have missed you!

The first speaker at our St. Louis conference was Dr. Todd Schwedt. He is the Director of Washington University's Headache Center and has written for the journal "Headache", as well as participated in running clinical headache trials. He has many more impressive duties which I won't go into here, but I know I am always impressed by the amount of work these doctors put in to their respective fields.

Dr. Schwedt lectured the "Overview of Migraine" portion of the lecture. Some points were:

-Migraine has a 12% overall population prevalence, which is more than asthma and diabetes combined
-Migraine contributes to a loss of $13 billion/year due to missed work
-Migraine is not a simple disorder - multiple genes and variations work with one another to produce the migraine disorder
-Emphasis that migraine is NOT a headache, and that the headache phase is only ONE part of a multifaceted attack that can occur over multiple days

Schwedt also discussed migraine mechanisms. Migraine patients are known as individuals with extreme sensitivity to stimuli, that is, they have a low threshold for attacks. To understand this, consider a likely trigger such as red wine. To an individual without migraine, one glass of red wine might lead to another, and another after that with no ill effects (except perhaps drunkeness and and urge to go straight to sleep with no problems initially). A migraineur's system, however, is sensitive to the ingredients in red wine and one glass may be one step over the limit for their sensitive brain. Even without an active attack, a migraineur may sense and respond to stimuli that others would hardly notice. We have increased pain receptors in the brain (the brain is elastic, it "learns" migraine just like it "learns" to read, "use it or lose it", basically), and our disorder is that of a systemic disorder, which means that migraine affects more systems than just the brain alone. Take into consideration that when we have migraine we may experience nausea or vomiting, though neck and back pain is more common than digestive maladies in the overall migraine population. Many of us suffer from allodynia (skin pain and sensitivities) whether or not we are in an active migraine attack. I know I do, though the skin pain is magnified during an attack. Some individuals will have problems with their vision outside of the aura phase, and others will have problems with motor skills or speech. No one migraine attack will be the same, even in one individual that experiences an attack, which is why it is difficult for many patients to actually pin down what is happening to them.

Schwedt also discussed that for some individuals, migraine is a progressive disease. Over time, since a migraine brain "learns" migraine activity, there is a possibility that left uncontrolled, migraine may go chronic in a portion of the migraine population. This is what happened to me. I was already susceptible to more than an "acceptable" amount of migraines in any given month, and I abused over-the-counter medications to control what I thought were just plain old headaches. So, my brain was constantly alternating between migraine and MOH (medication overuse headaches), and therefore a chronic state was achieved. Schwedt expressed that 2-3% of the entire United States population is chronic. However, with medication and trigger avoidance (if possible), migraines can resume an episodic state.

Schwedt's portion of the lecture was fascinating and very informative to the migraine-layman. I don't know what the attendee number for the lecture was but I found myself wondering how many individuals had sought information on the internet and how many of them were actually aware of how fully migraine affected them. I hope many of them went home satisfied and ready to take on misunderstanding indivduals with their newfound information.

To speak more of Schwedt's lecture would be to ruin the entire symposium. If you are able to, please visit www.headaches.org to see where you might be able to register for one of the NHF's patient conferences. I highly urge anyone with the means to do so to register as the information and advocacy is very much needed in order for society to understand and accept migraine as an invisible disease.

Soon I'll post information from Dr. Sohn's portion of the program, who dealt with "Epidemiology and Diagnosis" of migraine.

NHF Conference: Bridging the Gap Between Patient and Clinician

2011-03-29T16:13:00.003-05:00

It's been almost a year since I have written here. For various reasons, of course, that I won't bore anyone with at this time.

However, this year the National Headache Foundation has begun an inaugural process of hosting several conferences around the country in order to promote patient, physician, and public awareness of the burden of migraine and other headache disorders on the economy and the population. It stresses communication between communities, patients and doctors, as well as the people in life who do not experience migraine but who are frequently affected by it; i.e., employers and other family members of migraine sufferers.

I volunteered at the St. Louis event this past Saturday, March the 26th, and I am going to begin here by writing about my experiences with the NHF as well as highlights from the conference. I may have to write this in 2 parts, as I've been struggling with severe migraines since Saturday and I've currently had a Xanax and some Maxalt to knock a 9/10 migraine back down to a whimper. So stick with me, I plan on writing a lot about my experience with the NHF.

I volunteered for the morning physician section. Unfortunately, all of the physicians who signed up for the conference did not show up. Probably about 50% of those who signed up actually came. I was very disappointed that my own migraine specialists called to cancel. I do not know their reasons, so I can't be too critical, but I was disappointed. However, they supplied a lot of supplemental material to the doctors who headed the conference.

I ended up staying on for the afternoon patient sign-in too. One of the volunteers also called in saying she would not be making it. Again, disappointed by this turn of events, and I do not know why she couldn't make it, but we made it through anyway.

Since we had a quiet few hours before the patient program, I was able to take a walk around some of the booths they had set up for advertising. Early in the morning there were only a few promotional people there, but I took advantage of the two gentlemen who were advertising for the new Imitrex delivery system, the Sumavel DosePro. Basically this little contraption is a pen that injects Imitrex into the skin by using an air injection system instead of a needle. They have an excellent coupon program for this delivery system Rx so if you are interested try www.sumaveldosepro.com and check them out.

The patient program began at 1:30PM, and at this point I was allowed to leave my volunteer post to listen to the conference. Participating doctors included Roger Cady, Todd Schwedt, Richard Sohn, and Rob Nicholson. Each physician concentrated on one area of interest to migrainuers, which I will go into depth with my next post. After this initial conference, patients were ushered into one of four rooms where they held break out sessions, each dealing with a different facet of migraine treatments and current research. Unfortunately, due to my own migraine issues, I was unable to attend these sessions even though I was deeply interested in each of the subjects these doctors were lecturing on.

However, the preceding conference which I was able to attend was a fantastic overview of migraine epidemiology and medications which should have been highly educational to the patients who attended. My next article (or the one thereafter as I havent't yet decided how to break my comments down yet) will hopefully yield some knowing nods from those of you who know the foe you are up against. Some topics that were covered include migrainous stroke, rebound or MOH, and lifestyle management for the chronic migraineur. Also of interest was the physician desire to move away from the term "headache" for migraines, as they would instead like the disease to be known for what it is, a syndrome for which the head pain is only one part of the migraine process, and while debilitating, it is only one part that factors into an entire slew of debilitating symptoms.

Unfortunately this is all I have the effort to write at the moment. I am fairly exhausted with my own struggles this week, but I will attempt to continue my review of the conference within the week.

Stay posted.

It's Been a While

2010-03-30T12:34:00.003-05:00

Apologies for my long silence on this blog. My thoughts are not to abandon it, but I've been recouping since my PFO closure on December 1st, 2009, and now I am back after a few months' rest and ready to tackle migraine topics again.

My silence in the community hasn't been on purpose. I am trying to figure out my place in all of this. My migraines are not 100% cured, but they are much, much better than they were before. As of this writing, I have not had a migraine since the 18th of this month.

My migraines are still largely menstrual in scope. My menstrual migraines start a cascade effect of other migraines that last long after my cycle has ended for the month. Otherwise, eventually things calm down and I go through low-pressure triggered migraines more than anything.

So, the past few months have been up and down in terms of migraine activity. In February I thought I was back to square one. This month, I feel more positive about the PFO closure in terms of success. I am working out more often and have even lost some weight since my last post...I am urging my husband out the door for more activity too so I have gained some aspects of my life back. I have more energy and I sleep less.

Unfortunately some articles have come forward that frown upon PFO closure for migraine-cessation purposes. In the coming week I will post the articles and my reactions to them. The sole purpose of this post is to make an update and let everyone know I am still around and I still care about my friends in the migraine community. So I will do my best here in the upcoming weeks to lend my support and return to a position where I can be supportive.

Two Weeks Out

2009-12-15T13:53:00.002-06:00

It's been 2 weeks since I had my 2nd PFO procedure for closure, and I can more readily comment on how things are going. At this point I would expect this blog to kind of keep up with changes or lack thereof post-procedure, just so I have the accounts and perhaps someone can use them if they need them.

My migraine burden has been reduced, I'd say, about 40% right now. This week hasn't been good, as the pressure falls I trigger into some pretty painful migraines.

My menstrual migraines did not come on traditionally the week I had my period. So there were definitely peak periods of migraine activity and other moments where my brain wasn't acting up at all. But usually the majority of my period is spent in pain, while this past cycle I had maybe 3 days of pain and the rest were fine.

I've not yet had the theater test, though flickering light has always been a trigger for me, so I haven't got any hopes that my migraines due to those experiences will stop completely. I am still sensitive to sunlight, however. It hurts any which way it's cut.

However, I have found I have more energy. I react better to caffeine intake; I am no longer still sluggish and able to sleep on it. I am more alert and have more energy. My migraines come, right now, due to the weather changes and drops in pressure, so on the days I don't have a migraine I might get one the next or a couple of days afterward.

Sleep remains an issue for me, in a way. I am sleeping better, when I do not have a migraine, but naps may trigger me. Even though I have a better time staying alert, sometimes I still need to sleep no matter what.

My migraines are easier to treat. They respond to medications better and do not last as long unless the weather has changed.

I hope to begin a quantitative record of my migraines here soon. I did not start one from the get-go since I was unsure initially how I would respond to the procedure. Now it seems I am responding somewhat positively, so I would like to continue seeing just how much of a burden has been reduced.

Due to personal struggles I have not been posting on MMC, and I don't expect to post there anytime soon, even though I'd like to. Perhaps I will pop back in soon. Thank you for your support, again, and for keeping up with my blog here.

We Need to Help Our Doctors!

2009-12-10T14:01:00.002-06:00

Support your Migraine and Headache Specialist by signing the petition below. Your information is given to your local representatives and only them. By signing, you let our Senators know how important it is for us to help our doctors want to keep their areas specialized in headache disorders.

Please go to the link and read through the letter, and then sign and send! Alerts from the AHDA will also be sent to your inbox should you wish. I think it's a fantastic idea to stay alerted, that way you have a voice in your government's decisions.

Email Your Senators to Support Klobuchar/Collins Amendment

The Second Go-Around

2009-12-08T20:30:00.004-06:00

On December 1st, I had my second cardiac cath for PFO closure. I am happy to report that the cardiologist was able to find the residual shunt, and he did indeed close it with another device. This time he used am Amplatzer. I was on the table for 2.5 hours as it took them some time debating on whether or not the placement of the device was good enough to leave there. Since I already have another device, placing in this situation is precarious and could have caused additional damage to the heart if done incorrectly or if the anatomy was not good enough.

Will this cure my migraines?

Well, the answer right now is simply, I don't know. What I do know right now, the week immediately after, is that I am having less problems than I was before. However, I am also taking Plavix and aspirin 325mg together, which means less migraines for some who use this conjunctive therapy. Out of this past week, I have had 3 migraines, and another which began to develop overnight but was gone by morning. My migraines are responding to acute treatment better than before, which means I have had all of 2 Relpax and one vicodin this last week, as opposed to the multiple pills a day I was taking.

Migraine is still a genetic disease. My PFO may have been playing a huge part in how long my migraines were lasting and how they responded to treatment. Closing a PFO has been a cure for some, how many we don't know, and for others it's drastically reduced the number of migraines a person has over time. I still have menstrual migraines and I will likely still have weather and light triggered migraines as well. Though, closing the PFO will hopefully make my brain more able to withstand those attacks for a shorter period of time. However, it's still too early to tell how this will impact my attacks as I did not have an immediate response to the closure. The night of my closure I ended up with a migraine, though it took hours to come on, unlike the first closure, where I came out of the procedure with a migraine already.

I am already starting to take fewer naps, and I feel more alert during the daytime, though I do still need some assistance from coffee in the early afternoon. It may be that I can go back to volunteering at my previous interest on my days off without worrying about feeling badly. Unfortunately I cannot disclose where I have volunteered at as it is a somewhat dangerous area of interest and a dangerous area to work at. All I know was that I left there sick, and perhaps I will be able to come back well and ready to teach literacy. This is my hope, at least.

In any case, I'll leave you with a promise of updates to come as I begin to further understand just how a PFO closure may impact my migraines. Please enjoy the pics of my favorite coffee mug as well as before procedure and after procedure pics!

Resolution?

2009-11-17T09:51:00.003-06:00

This past October was literal hell. I ended up in a bad cycle and did everything to stop the pain. Steroids didn't work. Pain medications didn't work. Eventually I made it to the specialist with a screaming head, who gave me an infusion, whose work lasted all of 1 day. I've been test driving Darvocet for a week now and it seems to work better right now over my usual Vicodin. It makes me very sleepy, however.

I also had another TEE to look at my PFO. There is some confusion regarding the results of my TEE and the last TCD I had. My TEEs have shown that there is little shunting through my PFO, while the TCDs show that there is significant shunting happening someplace.

So, on December 1st, my new cardiologist has agreed to an IntraCardiac echo look at what's going on, and fix it if he can. One of my migraine specialists will be on hand to perform another TCD so that they can get a better look at the shunting. Is it another hole? The same one? Is my blood shunting through the St. Jude's device? We don't know.

I can only hope that this is a resolution of the problems I have had for years now. It's hard not to get overly hopeful; everyone wants to run from migraine pain in any way they can. It's why the snake oil industry works so well, and will continue to work well until people understand the truth about migraines.

I want this to be the option that brings me back to my life. I look with dread to finishing my social security application, because I've known forum members who have been denied disability because they post too much on the internet, which is ridiculous considering that the disease is different for everyone, and most of us need a link to the outside world since we are unable to get out in it as much as we'd like to. We've lost our lives to a disease we have no control over, and SS would like for us to have less control in order to qualify for disability. I don't want to leave my blog and my forums, which I may have to do anyway, if this option fails.

When Invisible Illness is Discriminated Against

2009-10-15T19:37:00.002-05:00

On MMC last week, a newer member posted this thread: Handicap Signs: Yes, There are Ignorant People!

It's a topic in which she describes the dirty looks and comments she receives from passersby as she uses her handicapped placard to her advantage (and her right), as a person suffering from Migraine Disease. Not only does she have Migraines, but she has a different form called Hemiplegic Migraine: Familial Hemiplegic Migraine and Sporadic Hemiplegic Migraine

Hemiplegic Migraine can cause a sufferer to go through stroke like symptoms, including half-side paresis, slurred speech, or other frightening symptoms. It can be very distressing for the sufferer and they may be unable to tell someone what is happening.

This member came back to her vehicle to find a note which read "YOU ARE BEING REPORTED FOR A HANDICAP VIOLATION".

WHY?

Because the individual who left the note could not see this woman's disability. She looked at a woman who could walk, and she thought she was cheating the system; using a spot that someone else who was "really" disabled could have used.

It struck me as funny when, on the Tyra Banks show last week, she talked to overweight women and how obesity was the last line of acceptable harassment and discrimination in the United States. I'm sorry, but it isn't. Persons trying to cope with invisible illnesses are just as put upon by people who don't understand their suffering. They are judged by people who won't stop to ask what is going on. Not that they should, because it isn't their business, but if I park in a handicapped spot with a perfectly legal tag, and you shoot me dirty looks because I can walk just fine, you know what? I'm going to ask you what the hell your problem is and why is it your business?

Sadly, I don't think anyone should have to go through a confrontation like that simply to defend their right to use a handicapped space. There are plenty of heart patients and cancer patients with whom disease is not apparent; we seem to think handicapped placards or plates are reserved only for the elderly who can't walk.

Instead of being enraged at someone's legal handicap placard when it's clear that individual can walk, because you don't know what their story is, be enraged instead at the individuals who use those spots for their own interests when they have neither tag nor plate.

I have no tags nor any plates that indicate I am disabled. I can still walk the parking lot to get to where I am going for the most part. And for the most part I do not run errands by myself anymore because I don't know what will happen to me while I am out by myself. However, I would never use the disabled spots because they are in place for people who need a shorter walk to the store for whatever reason. I get tired after just walking the mall. Some people get tired after less steps. It's not up to us to judge these people, but to ask them if they need help with anything, or, better yet, just let them get their things and get out so that they can go home and reserve their energy for their families.

The Agony of a 7 Day-long Migraine

2009-10-14T12:50:00.002-05:00

Last week I was in Status. I missed an entire week of work. I am lucky that I did not lose my job.

All of this was thanks to Migraine. On Monday I was prescribed steroids. But Thursday I was still so miserable that I had a breakdown. I took a lot of medication on Tuesday; so I know I was likely in rebound too. On Friday I made an appointment to see my specialist, and had an IV infusion. My orders for Saturday and Sunday were to stay sedated with Seroquel. For the most part, this strategy worked, though I have woken up every day this week with a Migraine, I've been able to break them and keep them broken for a solid 8 hours or so. Unfortunately, my sleep has been terrible and I have been an anxious, insomniatic mess.

On Tuesday of this week I saw my new psychiatrist. I was too sick to drive myself, so my mother took me. We ended up being late due to the directions being confusing, and the paperwork took forever to fill out. My father had a history of Bi-Polar Type I, and I myself have a history of social anxiety and depression. He hesitated to diagnose me with Bi-Polar, but he didn't dismiss it either because I do have periods of hyperactivity without the Migraines contributing. Right now, though, we don't know if the hyperactivity is due to the Migraine disease process or if absent Migraine there would still be a few days where I cycled through to a crazy state. Do I think I am Bi-Polar? No. Am I depressed? Certainly. I had that breakdown on Thursday and I was in my bathroom screaming. It felt good to scream, despite the pain, I have to admit. However, I am generally a very even-keel sort of person. I don't get moody often, not even during my period. Maybe weepy, but not full-blown mood swings.

What does Bi-Polar have in common with Migraine anyway? Well, Bi-Polar may be comorbid with Migraine. In fact, more Migraineurs suffer Bi-Polar at the same time:
Migraine Disease and Bipolar Disorder, a Link

Whatever is going on upstairs, it's clear that it's going to take time to fix. I've been put on new medication, Lexapro, with Abilify. I am reluctant to come off the Zoloft and try something new, however, as the Zoloft works on my anxiety like a charm. I still may not be able to engage people in the eyes as I talk, but I can interact with them better. I can throw myself into the situation easily. Most of the time it works for my depression as well, but there are times when I think the Zoloft lets me down as well. So perhaps it's time for a change.

I'm going to jump back to last week. It was one of the most difficult weeks I have ever had. Financially, it was devastating. Emotionally, devastating. Morally, devastating. It took so much in me to want to keep on going, but I knew my warning signs and I took the initiative to make sure someone knew I was in distress on Thursday. My sister came and sat with me for a while until my Zanaflex kicked in and made me too sleepy to cry anymore. So the next time you are thinking that you can't make it, and you know yourself well enough, please make sure to reach out to someone who cares about you, and that you care about. It may not make your head pain go away, but it can save you nonetheless. Migraines have the ability to ruin everything but it's our relationships with the people who love us that are the most important to maintain, build upon, and work at. I could go into the entire spiel about people who don't understand, but there ARE people out there who don't understand but who do understand that you are in distress and cannot help yourself. It's these people that you can reach for, regardless if they understand Migraine or not. To those who do not want to help nor care to see your pain for what it is, that we reserve the phrase "they just don't get it."

Driving and Migraines?

2009-09-28T00:23:00.002-05:00

Over at MMC, this post by Megan Oltman Migraines and Driving Don't Mix, highlights a problem largely under discussed. Right now there is an engaging discussion happening in one of our forum folders here: Can Migraines Affect Our Driver's License?

I will tell you right now that I am under the influence of a Migraine, vicodin, and a muscle relaxer at the moment I'm writing this. On a scale of 1-10, 10 being the highest level of impairment during a Migraine medicated with the above-mentioned drugs, then I am definitely a 10. I wouldn't be driving, and I certainly wouldn't be working. I'm writing, and struggling to keep my thoughts arranged in a manner that makes logical sense to my readers. So please forgive me if I wander off...I promise I'll come back to the path!

I'm not going to lie. I drive to work with mild migraines regularly. My pride is stubborn; I can't call my mom out every afternoon to take me to work. She lives 10 miles away. I do call her though, if I am in too much pain to drive but I think I can make it to work after medicating. I NEVER take vicodin and drive. I wouldn't take the Zanaflex and drive, either. My husband will help me too when he is home and available to do so.

However, the underlying summation here is that driving with a Migraine is akin to driving drunk. Migraineurs can and have had very serious accidents driving while in so much pain. Migraine tends to slow the brain down, and it can most certainly affect the timing of motor skills. I regularly run into walls or doors, or smack myself in the face with things. I can laugh at myself when those things happen, but it strikes fear into my heart that I have run 3 red lights and jumped an island all under the influence of a migraine. I am lucky that the lights were all late at night when no one was around, and the island? Well, let's not talk about it. I am just lucky no one was walking on it.

As a result I set myself into a hyper-vigilant mode before I get behind the wheel. This preparation is not always successful, as I tend to get lost in a very internally-directed thought pattern 99% of the time when doing routine tasks. I am terribly absent-minded because of this trait. It's useful for analyzing psychology, or writing papers, or studying the prison populations, but it's borderline deadly on the road. As a result, outside of getting myself to work, I let my husband cart my butt around. He gets to avoid my more mainstream taste in music, and I avoid killing people. It's a win/win.

Comparing driving with Migraine to drunk driving...Well, I would never drive drunk. I have NEVER driven home drunk before. Yet I drive with Migraine, and I openly admit I am an accident waiting to happen. Why do people such as myself do these things?

Well, I am enough of a burden on some people already. My work schedule is different from my husband's and if I could get one similar to his, I'd get rid of my car and just catch a ride with him. But being a burden is no excuse.

My job exists 8 miles down the service road in a straight shot, so it's an easy drive and the lights are predictable. Unfortunately the traffic is not, and I tend to get aggravated with the Sunday drivers who think it's OK to just whiz along the road at 10 miles under the speed limit. I am, however, a religious mirror checker and blinker user. I have handy-dandy bumper stickers warning people of my problems.

But it all means nothing when you are the party responsible for making sure your car doesn't meet another on that short path to work. There is no public transportation available between my residence and work, and I don't trust a lot of other people to drive.

I have to work, and I have to make money. I am barely working as it is. Losing your driving privileges is another loss of freedom when you are chronically ill. I don't go much elsewhere, and I don't put myself out for other people if I feel I can't do it.

It's times and topics like these that really push me to go for disability. I am happy just being at home. I don't need a lot of external stimuli to be happy or relieve boredom. I thrive on a quiet, peaceful atmosphere.

Migraines and driving...It makes you think, doesn't it?

What does one do to rectify this situation when it seems like there are no alternatives?

Petition to Stop the FDA from Banning Acetaminophen Products

2009-09-22T14:08:00.003-05:00

Diana Lee over at Somebody Heal Me has posted a blog about the proposed FDA ban on acetaminophen and acetaminophen-containing products.

As most pain patients are well aware. taken responsibly, pain medication can make a positive impact on a chronic pain sufferer's life, and make their lives more fulfilling where otherwise they would be non-productive members of society.

Why does the FDA want to ban acetaminophen products? Because people have the potential to abuse it. That's right. If you don't see something wrong with this statement, I'm sure you're in a brain fog at the moment (as am I, just writing this today is tremendously taxing). Acetaminophen has been known to cause liver damage, and death when used inappropriately.

Personally, this movement smells of hypocrisy. What else causes liver damage when used in excess? Oh yeah! Alcohol! But alcohol is freely available in liquor stores and grocery stores around the country. A single night's binge could mean alcohol poisoning, or worse, death. Or drunk driving accidents. Yet to ban alcohol would mean the outraged cry of a country not allowed to make its own decisions on how it wants to spend its weekends. Thusly, we have taken measures to insure that the wrong people don't get a hold of alcohol, while trusting individuals at the same time to be responsible once they are out of the store and out of mind.

While we're at it, ban cigarettes too. They cause damage to the lungs, and sometimes they cause cancer. Yet we trust individuals know the decision and the risks they are taking when they light up.

Can you ban chocolate too? It makes me fat.

However, the crucial point here is that these medications are for people who are in pain. Chronically, or outside of a recent surgery. Take it from the patients who know - constant pain makes you an angry, depressed, anxious person with no will to do anything.

To sign the petition from the American Pain Foundation, go to: Acetaminophen: Educate, Do Not Regulate!

Diana Lee's blog is an excellent source of articles from the APF, so I'd suggest stopping by her site for more educational opportunities!

Picking Myself Up

2009-09-13T22:59:00.003-05:00

You know, some weeks are always better than others for those of us with any invisible illness. I've been left wondering where the cascade of severe migraines has come from this week.

My stomach finally came to a halt this evening. I've had stomach problems for about 5 days now, the worst of which hit on Saturday. Saturday was a day, surprisingly, that I did not have to get up and take my medications first thing. But by the time I got home, aura had struck. I napped. I couldn't avoid it. I woke up and my head was hurting. Today hasn't been much better. My husband finally woke me up about 2PM. I moved slowly, took some medications, gave my shower the least bit of effort it took to be clean, and waited for Jeremy to get back with our lunch. I had to force myself to make it to my in-laws' for dinner tonight. I am extremely tired. My in-laws are pretty awesome, and I don't put out energy for very many people, but I missed dinner with them a week ago so I did not want to miss again.

What is it about migraine that makes us so damn stubborn? We are so tired, in so much pain, that living a normal life is difficult, if not impossible, if you're chronic. But sometimes, I still think I am Supergirl and that I can make it if I just put my mind to it. I should know better. Migraines are slowing me down more than ever, so consciously or unconsciously I pick a couple of goals to achieve the next day and then that's what I try to accomplish. Not much more than that gets done...If it gets done at all.

Monday morning I have an appointment with a new cardiologist. I will likely be scheduling an Intra-Cardiac Echo with him, done by cath. On standby will be the tools to close my PFO if there is room in my heart to do so. I am putting myself through this again and again, I'm just a little worried about it. The procedure will be longer, and there's nothing quite like the migraine that brews in a hospital overnight when the nurses are checking you every couple of hours. So, I cannot say I am eager to face the cath lab again.

Will this procedure help my migraines? I don't know. That's not the point, really, but it is the point, at the same time. I just want to know that I am not wasting my time on medications I don't need (or wasting the money). I just want to know that we tried before we move on to any other treatment. I just want to know that everything was done that could be done.

I don't want to get my hopes up that this will be the end of my hell. However, having loads of doctors telling you it won't work makes you eager to prove them wrong, as well. After all, this is my life, and I have a right to live my life as well as I can under the circumstances. I want to believe that man is willing to fight for his fellow man's chance to life, that the politics involved are null and void and that there are genuine people there ready, willing to help. I have found so few angels through this trial, though who I have found has made a major difference in the way I view humanity and the way I fight my fight. So, for them, just as much as for myself, I'll go forward with this and I won't look back.

30 Things About My Invisible Illness You May Not Know

2009-09-08T14:11:00.002-05:00

As Teri Robert has asked, this meme is pulled down from her site:

30 things you might not know...About the illness I, and many others, live with.

1. The illness I live with is: Migraine disease, asthma, and CEBV

3. But I had symptoms since: I had Migraine syndromes as a child; AIWS and a lot of motion sickness.

4. The biggest adjustment I’ve had to make is: Leaving friends behind.

5. Most people assume: That I'm just whining. I'm not. I'm in real pain, and in real distress.

6. The hardest part about mornings is: Thankfully I don't have to worry about that most of the time.

7. My favorite medical TV show is: Mystery Diagnosis

8. A gadget I couldn’t live without is: my iPod

9. The hardest part about nights is: The insomnia, and having to work

10. Each day I take: DHE and drink a lot of caffeine!

11. Regarding alternative treatments I: I have tried massage and meditation. I have nothing against alt treatments, but believe they should be used in conjunction with medical advice.

12. If I had to choose between an invisible illness or visible I would choose: visible, because then people take you at your word.

13. Regarding working and career: It is very difficult to work right now, and my school and career plans are on hold.

14. People would be surprised to know: That working through the pain is the most difficult part of all of this.

15. The hardest thing to accept about my new reality has been: The depression that comes with the territory.

16. Something I never thought I could do with my illness that I did was: Realize that maybe someone could take from my experience and find comfort in it.

17. The commercials about my illness: are terribly mis-informed!

18. Something I really miss doing since I was diagnosed is: Having the drive to go someplace anytime I wanted to with whoever I wanted to

19. It was really hard to have to give up: Some days with my husband

20. A new hobby I have taken up since my diagnosis is: Blogging about Migraine awareness

21. If I could have one day of feeling normal again I would: not know what to do with myself.

22. My illness has taught me: Some days are bad. Some days are worse. Some are good, and that's why I keep going.

23. Want to know a secret? One thing people say that gets under my skin is: people thinking I can take a couple of Tylenol and "get over" a Migraine.

24. But I love it when people: actually ask questions and want to understand.

25. My favorite motto, scripture, quote that gets me through tough times is: "I love you." -my husband

26. When someone is diagnosed I’d like to tell them: Be educated, don't fall for people who think they know what you're going through and how to cure it

27. Something that has surprised me about living with an illness is: I never knew how strong I was until I had to give myself injections during migraines when I could hardly fathom what I was doing

28. The nicest thing someone did for me when I wasn’t feeling well was: Helped me bathe, fixed me lunch, and let me sleep

29. I’m involved with Invisible Illness Week because: It's time people realized that many illnesses are invisible and just as debilitating as visible illnesses!

30. The fact that you read this list makes me feel: As if you want to know the truth and are ready to accept that having Migraines doesn't make you a hypochondriac.

Definitions: What "Cure" Means Exactly

2009-08-21T22:08:00.003-05:00

There seems to be some confusion when discussing the word "cure". To say that migraine is curable gives the sufferer the impression that one will be rid of their migraines forever and ever. When reading an article or website that promotes a "remedy," "cure," or other such malarky, the reader may be confused by the implication that curing your migraine can include such alternative therapies such as aromatherapy, massage, hot baths, cold/ice packs, or sleep. These measures aren't cures, they are simply relief for a specific migraine attack. A one-time, one-shot deal for that particular moment in time: Remedy definition at definition.com

There is no "cure" or remedy for migraines, no matter what anyone says. Migraines are not a result of personal anger issues, deep psychological trauma, stress, or negative thinking patterns. Migraine is a bio-chemical, physical disease process in which an outside stressor (trigger event) results in a chemical chain reaction throughout the body, called "cortical spreading depression". CSD can responsible for the aura symptoms reported during many attacks. Serotonin and other neuro-transmitters necessary for stabilizing the brain's "environment" may be depleted. These changes signal neurons to start firing in awkward and unpredictable ways; soon blood vessels may enlarge and begin to leak blood, resulting in the pounding headache and nausea associated with the pain phase of the migraine. Migraines may begin in the prodomal stage days before the pain hits.

Medications and supplements both may be used in order to control these outbursts of abnormal activity in the brain. But be aware, these treatments are just that, "treatments," and not cures. No one, including the medical establishment, is really sure just how the migraine mechanism is set up, though we are closer than ever to discovering the pathology of the disease, which in turn, could actualize a cure someday. Some people may be able to control their migraines indefinitely, or fall into remission. Some individuals, particularly women, may find that as they age, with the cessation of a menses migraines fade away into oblivion. Still others may worsen as they age. Some individuals may find they can control their migraines through relaxation techniques without the use of medications, while others will try new medications every few months for years unsuccessfully.

The path that migraine takes us on is a strange and frightening one, definitely. We're all desperate for help when an attack hits. Unfortunately, some of us are so desperate we'll fall for the inaccurate representation of the word "cure" in almost any article for almost any disease.

Please, be wary, and never be afraid to use the dictionary or other resources when you do not understand any medical terms or any proposed methods for "curing what ails you." It can save you time, hassles, and plenty of headaches (as if we need more, right?).

A Day in the Life

2009-08-17T20:24:00.002-05:00

I wanted to share a post with you about how my day usually goes, to paint a picture of how life sometimes is with migraine.

The night before the day of, I take a sleeping pill because I suffer from Major Depressive Disorder, and in turn, insomnia. Sometimes, I don't sleep at all. I will occasionally be awake for 36-48 hours. Prior to that sleeping pill, I've had my Zoloft.

I wind down before bedtime by reading. This does not always work in my favor, however, as I'm usually already well into a migraine before bed. So, some books that I love to read, such as sociological or psychological books may have to be put down for something a bit more dumbed-down. Sometimes, I just look at art books.

I usually set my alarm for 11:30AM the next morning. I don't generally work until the evening, so I can sleep in. I usually know by how I feel when the alarm goes off what kind of day it's going to be. At this time, I usually get up and medicate myself. Then, I go back to bed because I also suffer with CEBV, which calls for me to sleep up to 13 hours a day sometimes, when I am not in an insomniac rotation. I'll then get up about 2PM, medicate more, eat, shower, and take time in between tasks to rest. Even after sleeping so much, I am generally exhausted. I'm not a day person anyway, so my peak hours don't begin until 7PM or later. Usually I know my house is in desperate need of attention and my laundry needs to be done, but moving from the couch until the medication has kicked in or otherwise, all I can do is get ready for work and hope that I make it there.

Upon waking, my body takes me through several physical warnings prior to migraine pain. My persistent aura ramps up into full-time static TV mode, my ears ring, I'm dizzy and lethargic, and there's that hint of pain bordering along the back of my head. Hints of pain may remain hints of pain for a few hours, and as I increase activity, the pain erupts into the better-known throb of migraine pain. I might spend some time on the couch with a heating pad on my head, waiting for the meds to kick in, or I might go back to bed to rest before I have to be at work. Then, I hit the coffee pot for a jolt before I need to get behind the wheel. Never forget your sunglasses - I am very light sensitive during a migraine and it makes the pain and nausea that much worse.

If I make it to work, I'm happier because then at least I am around people, and not by myself. My husband works day hours so he isn't generally here for the migraine tranformation process. Even though I need to keep an attitude at work that is upbeat (for the most part), most of the time I am still in pain. I've been taught to hide it, and I do tend to hide it well. Sick people want to be normal, so we respond to those who don't know us as well by smiling and carrying on as if nothing is wrong. It makes things confusing when you call in, however...Managers and other employees wonder why you can't buck up for this particular shift when you can for others.

At work, cognitive processes might run a little slower than usual. There's many a day I can drop some mistakes and be able to blame it all on the disease process. Migraines can inhibit thoughts from developing fully, and it can rob you of memory and even the feeling of being linked to reality. It can make you forget what you are doing from one moment to the next, and customers do not like that. It makes you uncoordinated, and even though I'm absent-minded anyway, I regularly check into the walls and other equipment around the store. I may become super-excitable before a big migraine, which is a great burst of energy for work, but I know what's coming and may not excape it before my day is over.

Once I am home from work, I generally need peace and quiet. I may have a good cry during my shower if I haven't already bawled at work. If my migraine has disappeared, it's likely making a comeback and will rear its ugly symptoms before going to bed. I go through the drug regimen again, maybe taking a vicodin if things are feeling too badly.

I try to make plans with family on my days off. Sometimes it doesn't happen or must be cut short because during the summer time, St. Louis heat and humidity is an instant trigger. I get tired easily and must take a nap. Depression and guilt looms over me everyday that I cannot contribute much to conversation or activities because I have to reserve my energy for work.

Migraines aren't just headaches, they are robbers of life and vitality, and contribute to an overall worsening of life quality and health in general. Imagine struggling day by day, just trying to keep yourself together long enough to get back home and into bed, only to repeat the next day.

I Wanted This Hell to Be Over.

2009-08-09T23:25:00.002-05:00

Well, I must amend my last blog. It turns out my heart is still shunting a large quantity of blood, yet the TEE and TTE both showed PFO closure. Why? I'm not sure. My husband requested a TCD at my last specialist appointment, however, and the doctors agreed.

So, two weeks ago I had an appointment for another dopplar. The results of this test were just as extreme as the very first one I had in January of 2007 before PFO closure surgery; a grade 4 shunt on rest and a 5+ on Valsalva.

What is happening now? Well, I am waiting on calls back from my specialist. I have no doubts that there is another fight on the horizon. We're very confused about the conflicting tests results, and I may have to have another cath just to get a camera up there to take intimate pictures. Meanwhile, I am doing the same old, same old: trying to work and trying to stay out of bed (I'm failing on that count). Vicodin is pretty much my best friend right now, though I am not using it all the time. This morning I took an injection and had 2 DHE pills. Nothing worked, though it calmed the beast so I was able to peruse the bookstore in relative peace. My haul at the store? A book on creativity; the artist and depression, and what looks to be the sweetest book about a researcher who took care of and studied a disabled owl for its entire life. At least I still have reading as an escape.

The depression seems to hit worse everyday. My specialist put me on Pristiq and recommended me to a psychiatrist. Right now I am experiencing terrible mood swings on the Pristiq, and I hope that it will calm down pretty soon. I'm still on Zoloft. It's hot here in St. Louis and my body's response is to sweat itself stupid while everyone else around me stays dry. I need to check with my OB as well, there may be some more thyroid tests I need.

So, it's been disheartening and crazy around here. Everyone is mad and I just want to crawl under a rock and die. Or at least sleep for a long, long time.

PFO Conclusions

2009-06-30T16:20:00.002-05:00

About two weeks ago I had a final TEE and TTE with the cardiologist. We were all shocked to learn that my PFO closed over the past year. I still have bubbles showing, however, so the doctors suspect a small Pulmonary Arteriovenous Malformation. Will I do further testing for the PAVM? Likely not. Why? Well, if it is small, there is no chance of embolizing it. I'm very tired, and I don't want to go through all of the rigamarole of testing and surgery again.

I am glad that the action we took on the issue finally supplied me with some closure. I am very grateful to Bray for her unwavering energy and help in getting closure to this situation. A patient should never have to go through so many hoops in order to get answers from a doctor, and that was the most disappointing part of this entire journey. I wanted to know my PFO was closed, on the chance that it could help my migraines. Well, surprsingly it's been closed, and I have continued to have severe migraines, so we know that the PFO has not been a contributing factor. But the important thing is that I KNOW now. I have no more questions. I can move on to different treatments.

My depression has worsened, because now I am faced with a future full of struggles. It's been very difficult to get out of bed and face the day; I've had to force myself. There will likely be no children in my future, though I do hope to be able to get back into classes slowly. I increased the dosage of my Zoloft, so I hope that it will help me be better able to deal with reality.

Right now I am focusing on day-to-day treatment of my migraines. I am not focusing on long-term treatment because right now I am too tired to deal with it. I have every intention of dealing with it in the near-future, but for the time being I have to deal with my days as they come. Thankfully my days come without the added worry or stress of a heart condition that, for some people, contribute to the daily hell of migraines.

Migraine Art

2009-05-25T20:31:00.004-05:00

I've been working on this piece of art when I am feeling like it. Tonight I have a menstrual migraine that just won't die (I'm blaming our storms on top of it), and my husband is not at home, so after I have my shower I'll be working on it some more. Husbands are terribly distracting. Especially the smart, cute ones. The top skull has flames coming out of the top, and blind spots in a socket. The bottom skull has holes in the cranium and the scintillating scotoma in a socket.

Please enjoy the images, and remember, these images are copyright by me, and may not be reproduced or used in any fashion without permission. I'll post the finished project when I am able to!

Challenging the FDA: Stop the Pain

2009-05-24T21:00:00.006-05:00

Things haven't been going very well for me. My menstrual migraines continue to be a source of major stress, anxiety, and severe pain, along with my "normal" migraines (not that migraines are normal, but we all know and get used to what our headpain is signatured). I have had no pain free days in a month. Before that, I went through a few days of freedom that had been preceded by more than 6 weeks without a break in pain. Prior to this period by a few weeks, I went through a string of severe migraines for 7 days, ranging from a 7 on the pain scale to 10.

My migraine specialist put me on Dexamethasone to break the cycle of pain; it calmed things down for the time that I was on it, making the migraines easier to get rid of. Unfortunately they were back with a vengeance after the pack was stopped. In case the Verapamil I am now on failed (it has) to address the permanent aura and the migraines, my doc is to recommend me for long-term steroids, long-term narcotics, and pain management. I can't tell you how angering it is to feel like your doctor has given up on you. It broke my heart to hear him say that those things were even options for me, or for any sufferer, for that matter. I realize that in 3 years my migraines haven't responded to treatments, but the fact of the matter is I still believe the majority of my migraines are related to my heart problem. If closed, perhaps the reduction in migraines would help my medications work better for me, if I even needed them at all anymore.

Migraines are such a personal hell that anyone without them would never understand the freedom that comes from never having one ever again. Having a day free of migraine is a tantalizing preview of what life could be like. Life without restrictions, life without medications or endless copays. Life without worrying about what the insurance companies will or won't pay for (remind me sometime to tell you about how I needed acute IV treatment while in Status Migrainous) and how my insurance company refused to pay for any of it). Life without the misunderstanding and mistreatment of others who think you can simply "get over it" with an aspirin. You know what? We are protected by laws in this country and migraine as a disabling condition falls within the parameter of the Americans with Disabilities Act. Isn't that somewhat surprising for a "headache" that we should just "get over"? If you live with migraine, or with someone who has migraine, it shouldn't be. Migraine takes away life when it is allowed to run rampant over the sufferer.

In concluding this post, I would like to address a project that a friend and I have been working on, which is the ultimate goal of tonight's ramblings. I cannot take the credit; she has done the work. I have merely contributed my story in the hopes that someone may benefit from the effort to change the way the FDA regulates PFO closure, and to also gain closure from the poorly executed and failed ESCAPE trial, in which my investigational cardiologist will not return my phone calls or answer any inquiries into the state of my failed device placing. This article is copyright its author, please do not reprint or use without permission of this blog owner or the article author. Feel free to direct any inquiries to this post, or email me.

Continue reading "Two Women to Challenge the FDA": Stop the Pain

Facebook and Other Changes; Sleep Part II

2009-04-09T19:41:00.004-05:00

Hello all,

I've moved from my MySpace account to my Facebook account in order to stay connected with the migraine team from MMC. I still check MySpace so don't be afraid to send a message if you need to, just keep in mind that I it may take me some time to get back to you there. Facebook is an excellent alternative to keeping in touch with people you enjoy networking with, and while MySpace is easier to personalize, Facebook is more streamlined and also gives one options to express herself.

Things haven't been great around here lately. I have been banned from all electronic media before bedtime, since the Seroquel has given me the worst restless legs. Typically I sit up and wait for the stuff to kick in, not anymore. My doc had a fit when he heard that I was crashing out to the internet or TV before bedtime.

This week has been full of changes for myself and my sleep habits. Since I am restricted to artwork or reading before bed, that's what I am sticking to in order to get my brain ready for sleep, along with taking my night meds. It seems like we definitely don't pay much attention to the sleep needs out bodies have before bedtime, especially in America, but in just a few days I have noticed a change. I am no longer agitated before I do lay down, and I am trying very hard not to nap and to get up before 11 AM. My brain tends to get stimulated by all the reading I do on the internet since I'm a devout link-clicker, so in a way I tend to get all fired up and then it's difficult for me to get to sleep or stay asleep. I also tend to drink the majority of my liquids in the evening before bed, and that should be a no-no for anyone with sleep issues. My body is more used to getting up to eliminate in the middle of the night than anything else. It's been most difficult to cut down on the drinks since my medications tend to parch me in an extreme way.

Today at Bed, Bath, and Beyond I found a nice microwaveble eye mask. It can also be put into the freezer. I've fought a migraine for most of the day, and when I came home I tried the heatable mask. It's nice and size-adjustable so I don't have to worry about it slipping around on my head. It is also scented with lavendar and chamomile, which can be important stress-relieving scents for individuals with migraine or sleeping problems. It was comfortable to wear for me and the heat lasted a long time. I also purchased a sleeping mask for my eyes during the day when I can't stand the light during a migraine and need to lay down. I bought some good light-blocking curtains at WalMart recently but with cats in the house who enjoy laying down on the window seat sometimes you can't keep them closed. My cats are a necessary part of my migraine therapy so I don't deny them the bedroom when they want to be with me. Ever try locking a cat out of a room? If you're trying to rest, sometimes keeping them out is the absolute worst thing you can do.

For more information on sleep issues and migraine, keep tabs here at MMC: Transformed Migraine Related to Sleep Problems

Reconciling sleep issues with your daily habits and body's needs can be terribly hard to get through. I know, I've been doing it for 16 years now. But the important thing is to get yourself set up before bedtime with things you might need, like the sleep mask, heating/cool pad, a good book, your medications, and anything else you think you'll need to help you. These things aren't crutches, but they do take time, and making time for sleep is one of the most important things you can do for yourself. No one is better off if you're not sleeping. It can affect everyone in the household, including your children, especially if you're not functioning up to par. I urge everyone to re-asses the habits they are indulging in before bedtime and question what those habits are specifically doing for you if not preparing your highly-strung, sensitive brain for sleep. Specific sleep-preparing habits isn't just for you, either, it needs to be for everyone in the household. I know my husband is doing his best to make sure he sets a good example! And as for kids, well, I think that no matter what, children in today's world will best benefit from a good sleep-preparation schedule more than anyone else.

Migraine and PFO: Is there a link?

2009-03-10T15:25:00.002-05:00

I've been going through the migraine/PFO drama for a couple of years now. In January of 2007, a TCD revealed a large hole in my heart, 4 on resting, 5+ on Valsalva. After my PFO closure procedure, the device failed and I was left with a hole perhaps, just slightly, a teensy bit smaller. A 3 on rest and a 5 on Valsalva.

A patent foramen ovale is a hole in the heart between the upper chambers. It's necessary before birth to allow circulation through the mother and fetus, as a fetus does not yet need his lungs to filter out the junk we all accumulate as our circulatory system works. After birth, upon first breaths, this hole should seal shut, allowing the blood to pass into appropriate chambers, freshly filtered from the lungs.

One in four adults, roughly 25% of the population, will have a heart that still has an open PFO. The PFO may or may not be large, and may or may not cause symptoms for its bearer over time.

The prevalence of PFO in migraineurs is slightly higher than in non-migraineurs. Many studies have shown that a larger PFO may be suspected in the role of migraine etimiology, particularly in sufferers who have pre-migraine pain warning symptoms such as aura.

There are many theories revolving around the PFO:

1. A PFO allows unfiltered and unoxygenated blood through to the brain, making the brain more susceptible to its migraine triggers;
2. A PFO is not a CAUSE of migraine, but may be implicted in perpetuating the migraine cycle in individuals whose migraines are not easily controllable by medications;
3. A PFO may cause a migraineur to be more susceptible to stroke (by allowing clots through to the brain). Divers with the bends, and other stroke patients, all with PFO, were among the first to discover that by closing the hole, their headache symtpoms disappeared.

These theories aren't met without hard questions however. During MIST I, a UK study generating the first-line results of the PFO/migraine debate, it was discovered that up to 37% of migraineurs with closure were migraine-free or suffering less frequently or intensely. Unfortunately the variables used during the study such as stroke victims, couldn't rule out the function of PFO and migraine exclusively. Its participants had already had focal neurological damage and would have been candidates for closure anyway. MIST II shut down shortly thereafter, claiming a cutoff of funding and perhaps controversy over examination findings and whether or not one of the lead investigators was truly qualified enough to BE an investigator. The MIST studies can be found through Heartwire, a cardiology journal. Beware, as most research articles go, you'll pay for the article if you want to see it. Here's a substitute article: MIST: Migraine Intervention with STARflex Technology Trials

The ESCAPE study, in which I have participated, was recently shut down for several reasons. On one hand, there has been positive anecdotal stories about successful closure. At my site, there were supposed to be around 500 study subjects; unfortunately about 50 is what we got. Out of those 50, 2 of us had incomplete closures (yours truly). The PREMERE device was pulled from study due to its ineffectiveness at closing ASDs and new study subjects were turned away. The device has been called too flimsy to work for PFO closure. There's an article for this failure, too: Just a 2% Overlap for PFO and migraine

There is always a double standard to research studies. Firstly, doctors want to know what works for any disease. And when you suffer from something that takes over your happy life, you know you're up for just about anything when it comes to getting a cure. That's where your research participation comes in. Secondly, there is always a medical institution that wants to make money by getting its device/medication out there for chronic use in treatments or surgeries, and by word of mouth for being the best option. My study device failed due to design failure and too little surface area to effectively shut my large PFO.

Recently, in Italy, a new study confirmed that yes, PFO closure works for migraine: Fixing a Hole in the Heart May be the Cure for Migraine Sufferers

However, why is it that Italy's study seems to have avoided controversy along with suggesting more than a casual link between PFO and migraine? It might have to do with the fact that they narrowed their criteria down to individuals with aura and large PFOs, rather than just anyone with a PFO of any size or any type of migraine.

So what does all of this mean, exactly? Well, we can't know for sure. What's known for sure is that many of us that experience migraine with aura have a PFO, but others do not. That makes it even more confusing. In my case, I experience migraine on a daily basis, with persistent aura. When I went in for closure, and the device was still seated correctly, I had no aura for months. However, I did still experience almost daily migraine attacks, but that was to be expected. Cessation of migraine attacks in individuals with PFO closure sometimes doesn't occur until the 4th month after closure, at the earliest. 6 months after PFO closure, my migraines got worse and my aura became permanent. 6 months after that, I discovered my PFO had been randomized into the test arm, but that the device failed.

What this means, for now, is that PFO closure is likely a future treatement for those with the most severe and debilitating attacks following aura. What we do know now, is that women who undergo migraine attacks with aura may be more susceptible to heart disease and stroke than those without aura: Migraine with Aura Linked to Cardiovascular Disease in Women

What I am hoping for is that this information will eventually come together in a way that most benefits the individuals who suffer with migraine. Personally, I think it's all linked, in one way or another, for many of us. For others, it likely won't be. But just the fact that these are new discoveries under investigation makes the future of migraine treatment look promising.

Sleep and Migraine, Part 1

2009-02-17T14:19:00.002-06:00

Sleep is normally regarded as an essential part of life. Its mysteries have yet to be fully unlocked, but as a Migraineur I know that sleep is my best friend, and it can also be my worst enemy.

Sleep can be a Migraine trigger for many individuals. Too little, or too much, can overwork the brain into a frenzy. Unrefreshing sleep may also wake an individual with a severe Migraine.

Sleep and I have a love/hate relationship. My sleep issues are compounded by my CEBV and depression. Sometimes it seems like an endless chicken/egg cycle. I almost always wake up with full blown aura activity or a headache. My headaches aren't always Migrainous in nature, but left untreated these headaches have generally turned into a full-blown Migraine. It can be confusing - you need sleep but you know it's going to hurt when you get up.

Generally if I trigger from sleep alone, it's going to be because I had 4 hours of sleep the night before and came home from work to nap for another 3-4 hours. Because of the CEBV, some days I sleep 10+ hours, and I'm in trouble when I wake up (like right now). I went to bed last night around 1 AM (which is typical for me, that's my schedule), and today I finally got up about 1:30 PM. My Migraine specialist has me on Seroquel and melatonin both to help boost my anti-depressant and keep me asleep through the night. The Seroquel really puts me down, and the melatonin keeps me out. Generally I will wake up in the night anywhere from once to 3 times. Sometimes I will be unable to sleep after waking up so many times. Every once in a while I can attribute my insomnia to Migraine euphoria; other times I have only my napping to blame.

Poor quality of sleep can be attributed to many causes. Bad mattresses, pillows, napping for too long in the afternoons, depression or anxiety, and any number of illnesses or disorders. These things all perpetuate the Migraine cycles. I'm sorry to say I haven't found the key to adjusting my sleep outside of avoiding long naps. It seems no matter what I wake up unrefreshed and heading into a Migraine. The good thing though, is that talking to my specialist helps me to look for answers that may help me. But just like finding the right medication or regimen to help ease the number of Migraines one is having, finding the answer to good quality sleep can take a while too. I am happy that I am sleeping throughout the night for the first time in almost 5 years, but it still worries me that I sleep so much and I'm dependent on coffee first thing upon waking.

So where is the answer? For me, there is no solid answer since CEBV relies heavily on rest when the body has been pushed a little further than it's able to cope with, and Migraines in and of themselves can be fatiguing and push you into bed as a coping mechanism too.

For others, however, understanding your schedule of sleep and looking back on your Migraine diary may give you a clue as to whether or not sleep is a trigger for you. When you can see a sleep/Migraine pattern emerge, it may be time to pay more attention to what is going on in the evenings before you sleep...

The Migraine Book (of Doom)

2009-02-13T21:57:00.003-06:00

Hi all...I'm back. I hope to maintain my resolve to keep this blog going.

Still no word from my cardiac surgeon. Oh well. At this moment in time, I am not sweating it.

I did see a Neuro-opthamalogist this past week, however. He diagnosed me with vasospastic arteries, and put me on Verapamil to control the disorder and hopefully help my persistent aura.

I have also seen my migraine specialist since then, and we are going to try Seroquel again, to give my Zoloft a boost and help the neurotransmitters in my brain to level out. Hopefully, the Verapamil and Seroquel together will calm everything down.

I am still taking my DHE cocktail as well, and have added Migranal in too.

So, there are my updates. However, I want to write about my migraine book. It seems that with migraine being as stubborn of a disorder as it is, it's sometimes necessary for chronic sufferers to put together a binder of important information in case of an emergency. In my case, my constant migraines are a stroke risk, coupled with the vasospastic arteries and the incidence of my PFO. You cannot be too careful when it comes to logging your medications and health issues.

First off, I bought a binder with kittens on it. You can buy whatever kind of binder you want, of course, it doesn't matter. I chose kittens because I love cats, and babies are always a happy thing. You need some cheer in the hospital, right? Next, I filled it with folders. I labeled these folders for migraine articles, personal health info, and consent/information about the ESCAPE PFO trial. Also, I have plastic sleeves that I keep the pharmacy drug handouts in for easy access. My migraine diary is also in this binder too, as well as the TCD dopplar readouts from my PFO testing. Anytime there is new information to add, it goes into the book or is written down in the workbooks. You shouldn't be restricted by anyone's methods, either, unless your doctor has a need to access that information too. So whatever manner of information gathering works for you, get to it! You never know when you'll need that info. As an aside, I have begun decorating my binder with goofy stickers. Now my doctors all know I am a dork, proudly proclaimed on the inside of my binder!

Sometimes the migraine patient can be confused about what she has or hasn't tried yet. These workbooks, provided by Teri Robert at http://www.healthcentral.com/migraine/tools-192843-5_2.html can help you keep track of what's going on. With managing migraines, the last thing you need is to doubt what you've done in the past.

Also, ER forms for your migraine doc and you to fill out are also handy. Found here, http://www.healthcentral.com/migraine/tools-195672-5.html , these forms help the ER staff to treat you more effectively by understanding that you are, indeed, a migraine patient under the care of a neuro or specialiized doctor who may need different medications that are generally given to migraine patients. The migraine complaint is among the first when drug seekers go into the ER looking for pain medication, so these forms can also help you avoid being labeled as a drug seeker.

Last but not least, a medical ID bracelet is a good idea as well, especially if you are taking several medications. In an emergency, if you cannot speak for yourself, the bracelet can, and the ID company's dispatchers have access to your medications list so that responders know what they can and cannot give to you while you are under their care. Your physicians' information is also stored so that they can be reached if there is a question about your health. In my case, I have a PFO occluder device and a cardiac anyeurism, along with a PFO that was not sealed with the occluder, so my cardiologist's number is a primary contact. Of course, we all hope that we'll never have to use the bracelet for any emergency situation. But it's worth paying the money to make sure your family and emergency care doctors don't have to scramble to make guesses about your medications or conditions. Plus, donations to the ID companies go to help other patients with their needs as well. It's a win-win situation for everyone.

Confused yet? I am.

2008-12-19T14:21:00.004-06:00

Well, here I am again. I just can't seem to keep up lately.

The DHE cocktail that my specialist gave me seems to be working all right. So, now I take those more than I take my triptans, which I save for particularly stubborn cases.

I'd catch everyone up on everything, but I'm so confused and lost that I don't even know where to begin. We are trying to get ahold of my cardiac surgeon, still, to see if this can still be fixed. I even went to another cardiologist who is a personal associate of this other surgeon (and even refers patients to him), and they personally talked about my case. The surgeon was supposed to make arrangements for another evaluation of my PFO, but that was 4 weeks ago. So, I went ahead and contacted my coordinator on the cardiac side of things and was told I'd have to wait for an answer from St. Jude (the study sponser), and that she's work on it for me. I just want a yes or no answer, for goodness' sake! I'm tired of the rigamarole. Just tell me yes or no so that I can have closure and throw myself into other options. I'm tired of it. I'm so tired of it that I'm beginning not to care.

So my migraine specialist is referring me to a neuroopthamologist for my persistent aura. I haven't made that appointment yet, either, though I did call insurance yesterday to find out if either doctor was covered. Lucky me, they are. However, I can't help but think how ridiculous this all is. I can barely take care of myself but I'm expected to take care of all of this? I mean, I know I should. It's my responsibility, but I want to give up and let someone else do it for a while...That's probably why I haven't written much around here or MMC...Everything reminds me of the overwhelming job this has all become.

Oh well, I just took a Relpax so I think I might lay down for a bit. I really need to finish cleaning, but I'm not sure I have it in me.

Depression and Migraine...Pass the Chocolate!

2008-10-15T19:24:00.005-05:00

Diana Lee is hosting October's Blog Carnival: http://somebodyhealme.dianalee.net/2008/10/migraines-depression-oct-08-headache.html

Hop on over and see what our friends are saying about Migraine and depression!

I was highly interested in blogging for this month's carnival, but was too sick to consider doing so. In any case, I'm still going to share what I know and how I cope with depression.

I've always been the more serious sort, more prone to melancholy than anything. Not only do Migraines tie up the serotonin in your brain, just the day-to-day literal grind of Migraine can things plummet even further. It's hard enough to control depression on its own for many people, but coupled with a chronic disease, it can also wreak havoc on the sufferer's outlook on life and the way they manage themselves.

Depression is often co-morbid with Migraine. This means that it is neither the cause nor a primary condition of Migraine, it just happens to exist alongside Migraine or develops as Migraines remain out of the sufferer's control. Some individuals can't help but to develop depression with Migraine, but it can be controlled.

And why wouldn't someone with chronic Migraines get depressed? Life as you have known it so far changes. You have to make adjustments and concede to the disease, which often means giving up liberties you once enjoyed. A $25 dinner out might mean a $25 copay that you'll need for medications...Among all the others you're on. Your insurance dictates what medications you can and can't have, and sets their prices. You lose time and plans to a day spent in pain and recovering in pain, tucked away from friends, family, and other activities you might enjoy if you weren't fighting so hard to make it though the day. You feel guilt at letting people down. You lose friends. People think you're faking. Your family might not even believe you have a problem, even if diagnosed. You might be scared to go to the ER, fearing how you might be seen and treated by the doctors, regardless of your own specialist's instructions.

There are so many reasons why one might be depressed along with Migraine, it would be impossible to list them all.

The thing is, we're a society that takes so many pills for every conundrum, but then condemns others who are taking them to just see a little light at the ends of their tunnels. But you know what? It's OKAY to take an anti-depressant. Having been against them myself, and now having taken them for a while (Zoloft), I understand what a difference they make. I DO NOT approve of anti-depressants for a short-term situational depression that can be handled by lifestyle changes or a therapeutic talk (how many ever talks you need to work through it!). That tactic is evidence of a pill-happy nation if ever I saw one, not to mention the havoc that unwarranted anti-depressants can wreak on the brain that is perfectly capable of handling itself. But, if you are suffering from the long-term effects of a depressive disorder, then there is no reason not to seek the help of a pill, along with counseling.

Before Zoloft, it was difficult for me to get out of bed, or even care about anything. Work, socializing, hobbies...Nope. Didn't care. With the help of Zoloft, I've been able to master getting up before 12 noon (this is a miracle for me, ok, don't knock it!). I can't say I care about chores, but who does? The thing is, I am getting things done. I'm reading again, and writing. Probably, I am still not doing enough. But, I can talk to people now like I used to be able to. Conversations with some people have been uninterested grunts. Generally I was checking in on people so they wouldn't think I'd stopped caring. So, I'm getting there.

A Migraine attack still sends me spiraling down into depression, however. Since I'm used to having a better mood each day, for the most part, this instant jerk downwards can sometimes really shake me up. However, it's also a clear sign that my head is about to misbehave. But I become more impulsive when my mood tanks like that. I lock into survival mode, and if I do not get my chocolate when it's demanded, well, I could lose control...Silly, isn't it? But, those are the other ramifications of Migraine. The ones no one sees.

Getting depression under control can also help lock down on the Migraines, as well. Once the serotonin is under control, many people see marked improvement in their Migraine frequency or intensity. This is just another reason why we shouldn't be afraid of these pills. And if one doesn't work, we shouldn't be afraid to try another, or another,if we must. It gets tiring to try new med after new med...But rather than letting depression take you over, exert some energy to fight for yourself again.

Nothing worth having was ever gotten for free.

Do, or do not. There is no "try".

2008-10-08T23:32:00.003-05:00

I have received a lot of support this past couple of weeks, and I appreciate every last single bit of it. I've needed it. Sometimes it is hard; when things get rough, I tend to withdraw from everyone.

I called my cardiologist and asked my research coordinator on that end if anything could be done for my situation. They still don't know, and I haven't heard back yet, so I will make another call tomorrow about it. I was supposed to have a call back today, but I know they are busy. It's a fault to have so much patience, but I try to put myself in the doctor's shoes sometimes. I can't imagine the schedules they work around.

If this does not succeed, then I will get a second opinion, and a third, if I have to. I'll keep fighting. I want to live.

On other matters, a very bad sinus infection has put me down since late Saturday night. I haven't had this severe of an infection in 3 years. It moved straight to my lungs, too. So, not only have I been coughing relentlessly, I've had migraines on top of it all, due to the lack of sleep and the strain from the illness. And then, there's the little thought in the back of my head, "The PFO! The device! What is the strain doing to it!?" Well, if there is one thing I do reasonably well, it's freak out. But, outside of the chronic eye sparkles (hey, do you have a wand for that, MW? :) ), and the pain on top of everything else, I'm satisfied that the heart has passed this test. Unfortunately, every time I cough right now my head throbs in pain, even if I don't feel migraine pain at the moment.

I also watched the Presidential debate last night. Healthcare is an important issue to me. There's no denying that our healthcare system is moving in an elitist fashion. I just want a solid idea of what the candidates are going to do when in office. I wasn't very pleased by the way the debate went. McCain was on the offense more often than not, relegating Obama to the defensive position. Now, I am a newbie to this voting thing, so maybe it's typical (I just never cared to vote when younger...I preferred to be left alone). So, the process is fascinating to me, but it's a bit much to take in. However, I felt that Obama was left to defend himself when he should have been getting more opportunity to speak his ideas instead of rebutting McCain. But, like I said, maybe that's how it's supposed to go? I'm sure someone will clue me in. I will keep an eye on the next debate too. All of you should too.

Well, I will get on to subscribing to my partners-in-crimes' blogs, listing more, and also work the circuit to see what I've been missing as of late. I think my blog is woefully underwhelming at the current. So, TTFN.

Sorry for the Absence...

2008-09-26T12:30:00.002-05:00

Well, I've been silent a while. Apologies for that. Since the one-year mark passed for the ESCAPE trial, and I was unblinded, I pretty much took a hiatus from pursuing anything heart or Migraine related.

It turns out I received the device, but it didn't take, so my PFO (which was large), is only a fraction smaller. This could explain the monumental Migraines I've been having since the 6-month point.

I was devastated by this revelation; I cried, I was angry, my husband was on suicide watch. I will be honest about that. As long as I am, I think I will be OK.

My doctor swapped out a lot of my meds. I am no longer on the Trileptal. Now I am on Lamictal, Slow-Mag, melatonin (for sleep), aspirin (for stroke prevention), a higher dose of Zoloft, and I was also given a DHE cocktail whose unfortunate side effects caused me to lose 10 pounds in 2 weeks. Now, I want to lose weight, but not like that! So, I have been sick for quite a few weeks and I have missed a lot of work.

So far the only consistent medication I have right now is the melatonin. My sleep has been out of whack for years. Now I sleep right on through like a baby, which has been awesome. It still hasn't improved my situation though, except maybe I am more rested.

I was told by my ESCAPE coordinator that if I wanted something done about my heart that I had to pursue the options on my own. It's all very tricky, and my head is in a mess thinking about it! You'll understand why I took a hiatus and was in no rush to make any decisions in a moment.

There is no guarantee that closing this hole means relief from Migraines. Studies HAVE shown a reduction in frequency for many people, and complete relief for some individuals. If I pursue the closing of the hole (because having a piece of metal doing nothing in my heart freaks me the heck out), there is no guarantee that it could be done through catheterization again. It might be open heart. Do I want that, even if a cardiologist would agree to it? I don't know. So far I feel that if this is taken care of, the meds might have more leverage to work better. And I don't have to wait out a stroke, which may or may not happen. Also, my insurance will likely not cover this surgery. My mother wants to pay for the entire thing on her own, though. But I can't let her do that, even if someone would agree to do it.

So, I feel very stuck right now. I wanted to begin the application process for disability but I'd have to quit my job, get a lawyer, lose my insurance, and then wait, likely, over denial after denial of benefits...Meanwhile, I have a home to pay for, that losing would break my heart. I cannot quit my job.

There is so much going against me. How are we who are sick supposed to win against seemingly insurmountable odds?

The Migraine Stereotype

2008-08-01T16:12:00.003-05:00

Just like everything else the fast-paced, information-saturated world we live in, Migraine can be and is highly misunderstood by those who either have never experienced a Migraine, or who perhaps do experience Migraine but don't yet realize it. It is also misunderstood for those who play the Migraine card but never really experience it.

The stereotypical Migraine sufferer will fit into a cookie-sized box of symptoms - you know, those symptoms that everyone knows goes along with Migraine. That would be the unilateral pain, nausea, sensitivity to light or sound, and sometimes also the relegation of the sick person to a dark and cool room, popping some Advil or other OTC.

Yes, these are major identifying symptoms of Migraine. What irks me about the information floating around out there is that there is little to no interest in diversifying some of the information surrounding Migraine. And I'm not talking about our bloggers, or MMC, who all do an excellent job of getting Migraine out there in all of its forms and symptoms. Without them, my sister would have convinced me that Migraine really was "all in my head" and a product of too much stress. In fact, I came very close to giving up my search for answers at the end of 2006 because I thought Migraine was all about being stressed, or at least, that stress was making me more ill than usual. Who knew that Migraine as a disease could change so much in one person over even a years' time?

Some people have Migraines without pain. On those little questionnaires, there is never an option for silent Migraines. Of course silent Migraines are trickier, but if you have aura then there's a huge identifying component there. Aura is another component rarely spoken of or prompted for when you're looking objectively at possibly having Migraine; it's only after you find support or the right doctor that you can breathe easy because you eyes aren't failing you. I had aura for 2-3 years before I finally read a blurb in a doctor's column in the paper about it. At the time, I was so scared someone was going to tell me I was going to lose my vision that I hardly ever talked about it to anyone. When I finally realized that I had Migraine aura, I didn't especially freak either because "Migraines are just headaches." No one ever tells you that aura can include hearing things, smelling things, or tasting things that aren't there. Aura messes with your senses, sometimes for only seconds at a time. When you go deeper into the aura phenomenon, all sorts of strange things can happen too. But the typical aura is generally regarded as visual sensory problems as opposed to full-body experiences.

Why is it when we go through symptoms like nausea, sensory disturbances, vomiting, tingling, fevers, and massive, all-telling head pain, we (and everyone else) think that everything is OK? When we hit the bathroom after eating something wrong or getting ill, we don't assume that we are fine. We know we're sick, and we take appropriate measures to help ourselves. We medicate, we sleep, we hide out. We're always second-guessing Migraine. Non-sufferers are always second-guessing Migraine. I always feel bad if I have to call into work or leave because I need medication or because I can't make it. I try to push myself endlessly. But I know if I were to catch the stomach flu, right away I wouldn't be blinking twice over calling in. Think of it this way as well; a normal run-of-the-mill headache does not make you vomit or get ill. Migraine does. So why do people think it's nothing?

So do we subconsciously still harbor, with all the information out there on Migraines, the notion that others have of us as not being sick (because they can't see it), and transfer that image on to ourselves? I hope we can all begin to move away from that. I think we are, especially now, but there is still so much work left to do.

The Know-Alls Come Out of the Woodwork

2008-07-23T21:08:00.006-05:00

This week I've had the pleasure of witnessing 3 individuals who think they have the answer to the disease called Migraine.

I'd like to point out that they don't. I'd also like to point out that if one decided to try their remedies, well, who can blame that individual? We all want this to end; we all want a fix or a path to a better life. But we all know the charlatan story, so why do people keep falling for it?

Migraine is not a subconscious affliction. It doesn't work within the parameters of psychology. Having a relaxed state of mind certainly makes Migraine bearable, and trying to remain positive does have an impact on how well you deal with the disease, and of course, life in general. That's advice we can all follow.

Blaming the sufferer for something the brain does when it encounters unwanted, untolerable stimulation is very, very dangerous and irresponsible. You cannot turn the Migraine process off like a light switch, no matter how badly you want to. I'm not saying that to be pessimistic, and certainly there are individuals who can make slight adjustments to their lives and modify what and how they suffer, but the brain being the malleable structure that it is means that it learns what it does and it repeats that behavior, whether to good or bad ends. Addicts go through it. The brain learns pleasurable response to certain stimuli, and those susceptible to the genetics of addiction will give their brains something to long for repeatedly. The brain remembers Migraine. Without treatment to prevent the brain's overreaction to stimulus, the brain learns it can keep this up as long as it wants to. So some of us become chronic, and then all of a sudden others think they know better than we do how to take care of us.

Why is this? Is it because the AHS conference has shed some light on new treatments that may actually work in a clinical setting? Like zapping your Migraines: Zapping Migraines Shows Promise

What about ONSTIM? ONSTIM: Occipital Nerve Stimulation for Migraine

How about this fantastic article on the pathophysiology of Migraine? Why Migraines Strike

Are these people running sort of scared right now? And how come some of them allow themselves to comment on others' blogs but they won't accept comments on their own? Would you trust someone who does something like that? It's a small thing, but I wouldn't. Trolling legitimate work is a bit low when you won't face any detractors of your cause back. Way to facilitate communication and information exchange, buddy. Look, moderating comments is one thing. Being scared of comments and barring them shows how scared you are of being wrong. It should be a red flag.

The fact is, these individuals are doing nothing in the way of research. They aren't expending their time and effort to learn about or work with the people who are striving for you, the sufferer, at this moment, by going to these conferences and asking the difficult questions. Questions that need to be asked, and issues that we as patients need addressed. All they are doing is running their mouths and perpetuating untruths about a disease that is finally being unraveled. They want you to believe that the Migraine specialists who, in some cases, really put their necks out for you and remain honest, are horrible drug pushers who just want a kickback from the pharmaceutical companies. Personally, I have never seen any doctor who works harder than my Migraine specialist. He talks to me honestly. He asks me difficult questions and challenges my perception of my disease. I pay him for his time and it's a LOT of time he spends with me. Sometimes up to an hour, and you can see the wheels in his head turning sometimes. He doesn't leave any angle unexplored. That's dedication, that's work. It's not sitting behind a monitor perpetuating an idea. These doctors are rare, but they are out there.

Unfortunately Migraine is a disease whose onward march must be worked with slowly. It involves a lot of hard work to lose part of yourself to something that is terribly isolating and invisible to others, because you must push yourself to fight it sometimes, to modify your methods of doing things, and to sometimes pursue therapies you never wanted to in the first place. Having heart surgery was the last thing I ever wanted; now I may have to go through it again. But it's a small price to pay to even reduce Migraine frequency.

I believe that meditative and self-awareness exercises are good for the Migraine sufferer. Alternative therapies sometimes work very well for us, in conjunction with doctor visits and medications. There's no reason they shouldn't, except certain individuals want you to think your doctor abhors alternative practices because it impinges on their wallets.

Just beware the perpetuation of ideas from anyone who claims he knows the way to end your suffering while blindly ignoring facts.

AHS Conference and Trileptal

2008-06-26T13:40:00.003-05:00

Well, I haven't posted for a while. I've been away from the computer a lot. I've typically been spending only 30 minutes or less on the thing, and the way I go, if I check a site and get hooked on something, I forget everything else I was after.

For the PFO study, I had an appointment at the beginning of June. Thankfully he took me off of the Toprol and then he put me on Trileptal, another anti-seizure med, like Topamax. Unfortunately I came to find out that Trileptal was found ineffective at preventing migraines, though it's definitely more tolerable for me than the Topamax was. However, I had a good three-week run punctuated by a couple of severe migraines. Was it the Trileptal? Was it because I stopped eating dairy? It sounds funny but I've stopped eating cheese in copious amounts. However, this week has been very bad and I'm still not eating cheese. So I am not sure.

This week also, our awesome advocates at MMC are attending the American Headache Society conference in Boston. Both Teri Robert and Eileen are working hard to bring us back news of the developments in migraine research and treatment, and have promised to update us when they can. Which in turn, means we can post this info on our blogs and get the word out to all of you who are suffering with and without answers.

2008-05-18T23:40:00.002-05:00

Saturday collapsed into an unmanageable, panicky day. My migraine from Friday popped back up, and being all out of Axert, I depended on Vicodin to make it through the day. I didn't fall asleep until about 7AM on Saturday morning; the Vicodin makes me sleepy but at the same time it causes a lot of agitation for me. I also have a slight allergy to it - it makes me itch mildly. The other narcotics I can't handle, otherwise I'd be in the bathroom all night long.

I went in to work on Saturday night and my morale was so low I knew I was going to lose it there. At some point I had to remedicate with Vicodin and it went downhill from there. I could not work and I was in pain; I was too depressed to get my act together and I seriously began contemplating the benefits of the afterlife. I'll be honest right now, I made my husband come get me and stay home with me because I was out of my mind and I did feel like I could cause harm to myself. That was my reality last night. An employee relieved me and I sobbed on the phone to my mother; I didn't know what else to do. I am very tired of the baggage that comes with Migraine Disease. At one time, the violent ones were so sporadic that it made the more frequent and mild ones tolerable. But now, my head bangs angrily almost every single attack. And the buggers are persistent - they hang on and on and make sleep difficult, if not impossible.

The bout I had with EBV earlier in the week also confused me and took a lot out of me. I've been doing research on the EBV as well, and I mostly don't like what I'm seeing. For everything that is known about EBV, like Migraine, there is just that much more that is not understood. I have a granuloma on my foot that, instead of receding, is only spreading, indicating that the EBV is causing my body to have a physical, immunological response to my own body, not unlike Lupus, but far less dangerous. But it's an omen of an immune system that is tanking, as if it already hadn't done that my entire life.

Before my migraines began to change in 2006, I was doing OK. I seemed to be sleeping less and I was able to get out more. When the migraines hit harder, I began to get more and more tired. The fatigue is a side effect of migraine, of course, but when I had mono it was very severe. I was out of school for 2 months. When I went back, I was on half days every other day, and I couldn't stay in class with everyone; I had to stay in the counselor's office and work there. The fact that I began to get extremely fatigued again with the appearance of more aggressive migraines makes me wonder if there isn't some association there with the EBV, since EBV can trigger head pain in some individuals. If there's a link, it would likely be like the PFO - only an exacerbating factor.

What concerns me about EBV is the likelihood of malignant lymphoma. Cancer runs on my dad's side of the family, and it isn't very particular about who or where it strikes, so the genetic predisposition is likely. The fact that I was hit so hard last week by the EBV makes me a little worried. I have petechiae on my arms. My granuloma is on the move (which, funnily enough began to appear the spring of '06). I have a persistently swollen, sore lymph node. EBV can be responsible for fatalities when it leads to lymphomas...Though, like deadly stroke in migraine, it's rare. But it is rare for the mono patient to experience repeated EBV attacks, but that is the population that lymphoma may appear in.

So, as soon as I can I will transfer my medical records to a new GP, and request some blood panels. It can't hurt to know even though I dread anything else happening. Better to be prepared, right? And to be proactive?

Someone remind me to call my migraine specialist for some more Axert samples tomorrow...

2008-05-16T21:39:00.002-05:00

Eh, I was going to do this fancy blog about The Matrix, Deja Vu, Migraines, and Alice in Wonderland, but it ain't happening tonight.

I am eventually also going to link more migraine blogs and websites to my own site, just so everyone knows I am not being an elitist snob, lol. I've just been too sick and too tired to do anything but ramble about feeling horrible.

Today I finally wrote my intent to file for intermittent FMLA status to my employers. This is the second time in two weeks that I have woken up with a severe migraine and have had to call in to work. This was also my last sick day. I thought I wouldn't need the FMLA, and in part I am in denial because to me it feels as if it's just one step closer to disability. And it may not be. I'm just paranoid. Anyway, I wrote a cool letter summarizing Migraine Disease and its impact on my life, and my desire to refrain from burdening my job with continual call-ins and a willingness to work with them if they need to move me elsewhere or whatnot. Hopefully it will go smoothly.

My migraine this morning was a fast and furious 10/10. I was actually having a dream about dinner with Bruce Willis and other celebrities (but Bruce was the important one, lol), and I had to excuse myself to the bathroom because I was complaining of an excruciating migraine. When I made it to the bathroom in the dream, I woke up and my head was screaming. I got up and fumbled in my purse for my last, lonely little Axert and dropped two Aleve into the belly with it too. I spent the next hour in agony as I waited for the meds to kick in. I called my store sup and told him heck no I wasn't going to make it in today, and my husband stayed home too just in case the medication did not work and I needed to go to the ER. I sure do appreciate him, and I tell him every time I get the chance how much his willingness to help means to me. I feel so guilty that the role of caretaker has been thrust upon him, but he doesn't complain and he does everything he can for me. I am slowly adjusting to being taken care of.

I really felt as if my brain were on fire this morning. The pain burned through the back of my skull and just flooded me with pain. I couldn't sit or lay down anywhere, or even move around. I have never had such a long hour in my life I don't think. My devoted little Suki sat next to me through the whole ordeal - she's good for that. Always good for a nap anytime and always with me through everything, as if she's my little guardian angel. Never take your pets for granted, sometimes they are wiser than we can ever be.

The rest of the day I spent sleeping and then some light shopping. I have been terribly exhausted since the migraine aborted and have had to push myself through shifts today. I did some lazing around and watched a documentary on Andy Warhol, while trying not to nod off again on the couch. Warhol's lucky he's crazy enough to keep me interested.

Anyway, I ramble. And that's a sign I should probably go get some water and take it easy.

And maybe watch a Bruce Willis movie. Hee!

I Never Pass Up an Opportunity to Sleep

2008-05-14T23:41:00.002-05:00

And I really don't, either.

Sleep is almost more essential to me than eating. Given the choice, I would likely choose sleep over food.

When I was 12, I contracted infectious mononucleosis. It's another disease that is highly misunderstood by many people. You never get rid of the virus that causes mono, it just lays dormant unless you have chronic EBV, which means you might have the occasional flair-up of glandular fever. It's more likely to pass mono on in the womb, causing many problems for an unborn child. One of my mother's friends had mono while pregnant, and she ended up passing it on to her son. The child has been extremely sick since the day he was born, and she's almost lost him several times.

EBV is carried by a large percentage of the population. Most people get it from their mothers, and the body reacts accordingly and develops immunity, so a huge portion of the population will never know that they are carriers. These people will likely never develop mono. If you didn't contract mono from the EBV as a teen, you likely won't ever. Both EBV and chicken pox are herpes viruses, and almost everyone you or I know as had chicken pox. Chicken pox also lays dormant after the infection clears up. Herpes is one of the most prevalent human viruses, and many of us carry them regardless of what we might think.

Unfortunately in some individuals the susceptibility for chronic EBV is high. I am one of those people. With migraine on top of it, getting out of bed most days is a chore. I know when the ER doctor told me last week that my lymph nodes were very swollen, that the EBV was likely going to kick me down.

I've spent every day this week so far in bed, sleeping from 1AM until 2PM the next day. If I hadn't had to work, I would have slept later. I've dragged at work. My throat and mouth have been swollen to the point of pain, mostly thanks to the lymph nodes. The good news is, I haven't had a migraine in 5 days, but I'm developing one now. I'm thinking the EBV squelched the migraine process, and now that I am over it, it's triggered this migraine.

Most people do not understand why I sleep so much. At one point I didn't either, and I fought it, but after a while you can't refuse sleep when you need it that badly. I get cranky if I am not in my bed for a nap on my off days, and even when it cheeses my husband off I still go to bed anyway. People say, "I need sleep," but I really need sleep. It is hard to tell people this without offending them. No, you're not a bore, no, I am NOT lazy, yeah, it's beautiful outside but there are times when my diseases control me, not the other way around. I'd love to answer my emails and messages every minute of the day if I did not have to cater to sleep.

Sometimes, sleep just wins. And with migraines, EBV, and a huge hole in the heart shunting bad blood around, is there any reason why it shouldn't?

MRI Nerdiness

2008-05-11T00:54:00.003-05:00

I'm waiting on MRI results. Since I fell a couple of weeks ago, and stumbled around like a drunk on a ship at sea, I thought it would be a good idea to see what was happening topside., of anything.

Having access to my own MRI brain scans, however, has made the past few days wildly interesting and they've given me a perfect opportunity to research anomalies that might or might not be present...And therefore to educate myself just that much more. Plus, seeing the differences between others' brains reminds me just how much I love the brain and the days I'd check out this huge brain book at the library repeatedly and spend hours just staring at it. I miss that book.

I've always had horrible balance. Well, I shouldn't say always. I can't pinpoint when my balance went out the window, but it's been likely over 10 years. Maybe being more conscious of it makes me clumsier, I don't know, but there's no one else I work with or know who is more clumsy than I am (at least outside of the internet).

At some point in the brain scan odyssey, I hit upon links between PFO, migraine, and an ischemia that affects the posterior circulatory area of the brain, which includes the occipital area and the cerebellum. The cerebellum, is of course, related to balance. I of course, am not an expert in reading MRIs, but I've come to understand a great deal about them and every time I look at my pictures I see something new. One of the research articles featured a brain MRI picture with damage in the posterior section of the brain, that looked very similar to some of mine. I don't quite understand yet the varying afflictions that can wreak havoc on the cerebellum yet, but I do know that reading the article felt as if I were reading a textbook account of my problems. Everything was there. The listing to one side, the dizziness and vertigo, the one-sided clumsiness. Ataxia and unsteady walking. These things, paired with migraine and a heart defect, can indicate definite problems for the sufferer.

Hopefully, I will have answers soon. even if nothing is indicated on the MRI I plan to pursue this line of thinking with my doctors until they exhaust their resources. Stroke doesn't always show up on MRI, and neither do blocked arteries. But I'm fairly certain there is a reason for these problems and I know that my brain is not always getting enough oxygen.

I also know I'm not crazy, and brain pictures are terribly fun to look at.

Impending Doom in Progress

2008-04-29T22:11:00.002-05:00

This weekend I ended up going through all 4 phases of a migraine attack. This is not unusual for me, but I found that after everything was said and done, I could link everything up to Monday's migraine, which was kind of neat, if not utterly disappointing as well.

All weekend long I had insatiable thirst. Sometimes my allergy medications and Zoloft make me super thirsty, but not in the way that prodrome does. I've drank a lot of water over the past 4 days, and have tried to avoid mass amounts of caffeine as it makes me even more dehydrated.

Sunday, however, I did drink some coffee. It's not unusual for me to sleep a goodly amount and then wake up, have lunch, and then fall asleep again for another 2-3 hours, even after coffee. If I fall asleep on coffee, I'm probably entering the pain phase shortly. On Sunday that wasn't the case. I don't typically drink a lot of coffee--maybe a cup a day if even that. Some days I don't even drink it at all. Sunday's coffee added to the euphoria I began experiencing. Reflecting on Monday's pain, I realized Sunday was full-blown prodrome. Leave an entire day of surprising accomplishments to end up as a precursor to some wicked pain! I finished a drawing of Leeloo that I haven't touched since before September of '07, and cleaned in the basement. After that, I found time to walk 1.5 miles on the treadmill and begin a light free weight training regimen. I also read. Now, I love reading, but my sleep and work time cuts into that hobby, which is very sad for me. It's the same with art. I'd work more but I'd rather sleep.

Sunday through Monday morning I didn't sleep well, and we had cold, rainy weather moving into our area. I had to work early, and maybe slept 2 hours that night, and half slept and squirmed the rest of the evening. By 1PM at work I was dragging, which likely brought the pain on quicker; by the time I left the migraine was developing over my right eye and moving down into my jaw. I had a lot of aphasia and drops in hearing.

Monday night was a kicker. I was in a lot of pain but the light sensitivity just added. I tried to watch the Star Wars themed Deal or No Deal, but I think that's possibly one of the worst shows to watch when you have a migraine. Not only does it not make any sense, but the graphics are awful too. I don't like the show personally, but since it was one of my favorite movie properties I thought I'd try. Eventually I gave up and took an Axert, even though I shouldn't have. Well, this dummy's migraine began to end about half an hour later.

Today's been fairly amusing too. Even though I slept more last night, postdrome has included running into everything, along with that decrease in cognitive functioning. Several times today I headed to different areas of my store and would stop walking as I struggled to remember what I was doing. Then, this evening, with no reason that I can discern other than my body is working completely against me, I fell flat on my face in the living room. Yep, just toppled forward onto our hardwood floors. I didn't trip on anything, none of the cats cut me off, and now i have bruises on all 4 limbs and a pulled muscle in my neck which is likely going to contribute to some sort of headpain. I can feel it lurking now. I can also laugh about the fall, but it's made me shaky too, and unnerved. I'm used to my ankles giving out, as I inherited small, narrow feet from my mother and horrible balance. I have one ankle with a perpetually inflamed tendon anyway, which makes it easier to give out. But falling forward onto my face for no reason? I can't really accept that as just an accident.

I'm just lucky that I missed my giant curio cabinet. I'm not sure what I would have been madder at, going to the ER with massive cuts everywhere or breaking pieces in my collection. Silly, isn't it?

Exhausted

2008-04-09T15:01:00.003-05:00

Last night when I came home from work, I had just a regular, normal, run of the mill headache hanging out in the back of my head. It's been a while since I've had one of those, regardless, I didn't treat it because I was hoping it wouldn't trigger a migraine. Anymore my headaches will trigger a migraine if they are bad enough, but anymore I can hardly tell the difference anyway.

That, my friends, was a very bad idea. By the time I went to bed, the migraine had kicked in. I had to lay very still in bed to make sure I didn't toss my cookies, and the xanax I had taken helped me get to sleep easily. I thought, as we all do sometimes, if I could just sleep it off...

Not a chance. I was up at 5AM with a left-side migraine, pounding out my heartbeat and making it impossible to get comfortable in my own bed once again. I tried laying on the couch with my head in all different positions. Nope. No go.

Now, I've had 3 Axert in the past 5 days. I did not want to take another. But I had to.

Thankfully, within the hour and since I was able to lay down to give the Axert a chance to work quicker, the migraine eased and I was clear by the time my husband's alarm started to go off. I've noted that if I can lay down for an hour and refrain from activity, the Axert works more quickly and thoroughly.

Now, I'm feeling a bit wiped out, as if I'd just run a mile (for me that would be something, lol). I can't figure out what the deal was; I had virtually no warning of impending migraine except for the fact that I craved sweets all night. Specifically, diet soda. Yuck, I know. I also eyeballed an employee's Skittles bag like I was on the hunt for big game and the prey was right there for the kill. I should've known.

Yet, the warnings slipped past and now I reap the heaping side of sleepiness from fighting a fight that was unevenly matched and fast and furious.

I think I am going to go nap with my kitties, who, even though they cannot kill the pain or reduce the hangover, are the ultimate migraine therapy for the weary migraineur.

Manky.

2008-04-07T23:29:00.003-05:00

OK, this post is not "manky," but the word gives me great joy, so I just tossed it up there.

Ugh. I'm not doing so well. I feel resigned to my fate but I hate feeling that way. As if there is more fight in there someplace. Maybe there is, but for the time being I am tired of fighting.

Sunday I took the day off to be with my husband and his family. I did alright until 5:30 when the aura hit. Two hours later and the nausea showed up, along with a fast-moving head pain. I medicated with the usual, and it simpered away fairly quickly. I was impressed. Generally I wait to take the pills; I'm stubborn like that even though my specialists tell me not to be.

I want to hold out hope that I received the device, but I am starting to lose faith that I did. It's not so bad if I didn't, because there's a chance I'll get it anyway, but it all depends on the research results, and I don't know if that will happen 5+ years from now or immediately once my year is up. The researchers follow us for 5 years, but I think the primary study objective runs only for a year. The problem with this is that my test site is still recruiting, so it may be another year or so.

When September is up, I plan on asking for an EEG. Now, frankly, and probably unnecessarily, EEGs freak me the heck out. Someone flashing lights at me to trigger seizures? Yeah. The problem is that I am firmly convinced that I suffer from absence seizures due to photosensitivity. But I am also a rather absent-minded individual, so how much of it is me withdrawing and forgetting about the world as opposed to seizing I don't know. I do know that in the past, strobing lights have caused me a lot of discombobulation and disorientation, so it's likely I have a mild seizure disorder of some sort. But I'm not a doctor, so I can't Dx myself, as much fun as it is to try. But hey, it'd help explain a lot of my sleep paralysis.

My friend suggested I try food elimination, especially wheat products. I'm fairly certain that I am not sensitive to gluten or related products, or really any foods at all. A huge part of my problems are the fluorescents at work...And since I have had untreated migraines the majority of my life, my brain is overtaxed and easily triggered anymore because that's what it's used to.

At this moment in time I am trying to discover new ways of being proactive about my situation at work without making it look like I am actively avoiding work. I don't want to quit my job; I can't, anyway. Plus I'm thinking about an extra part time job this summer if I can just get these attacks to quit already. So I'm researching my options and will likely make an appeal to the higher ups within the next couple of months to relax my schedule a little. I'm not looking for enthusiastic cooperation from them, but I'm looking for protection and I'm looking to educate them.

If I must identify with myself as a sick person, then there is a part of them who must recognize that as well. I'm not demanding that they trip over themselves in order to accommodate me or even to learn. I'm just looking for some understanding that this is not something I wished upon myself nor am I making the entire ordeal up. I want them to understand that this is something uncontrollable that I am doing everything in my power to work through and with. I've fought all of my life to not be so sick and I've been accused of being a sensitive, sick person (DUH) by my employers, as if it's the most horrible thing in the world to be. It's a personal struggle, yes, but I am human and we all have different crosses to bear. It makes me no less worthy whether my immune system is tops or not. I know my place and I know when I can't call in and I know when I MUST call in to save myself from agony and a store that will collapse if I can't make it out of the office. But unfortunately employers refuse to recognize that individuals have individual problems, and not herd mentality when it comes to personal issues.

I shame myself enough for having something like this; I don't need an employer to do the same.

Manky.

The Contortionist Migraine

2008-03-17T13:36:00.002-05:00

I'm glad to report that my OB and migraine specialist decided it was OK for me to be back on Seasonale. So, no more progestin-only, no more two week periods (I hope), and no cycle of migraines impacted by hormones with no end in sight.

While my hormonal migraines are controllable for the most part, through birth control, even after PFO closure randomization I am still triggered by uncontrollable factors. Weather, light patterns, and even certain smells can trigger me. What my specialist explained to me about PFO closure for migraines is that while they aren't sure of the role of PFO in migraine occurrence, what is obvious is that the condition exacerbates the tendency of a migraine brain to trip the wire, thus leading to more migraines regardless of triggers.

Weather is probably the most uncontrollable trigger that I can think of. Unfortunately bad weather moved through our area last night and I triggered sometime right before midnight. Sitting up wasn't so bad (it usually isn't), but once I got up and went to bed, my head reminded me that things weren't going to be pleasant. Many times my migraines begin in the back of my skull and move around to the right side, so it makes it difficult to lay in bed...Or anywhere for that matter.

So, after deciding to take the magic abortive combo, I settled in for a long wait for the pills to be effective. This culminated in a couple of hours' tossing and turning to find just the right position in order to keep my head from pounding as much. It's both amazing and funny what the body will endure in order to keep the head in an optimal position for pain resistance. I ended up with the upper half of my body on its side, and the lower half twisted around under me as if I were going to roll over onto my belly. My head I had extended up and out on my pillow, my arms forward, the lower one pinched under my side, going numb, but at least my head wasn't pounding. I had to look like the circus freak. But my head didn't hurt.

Unfortunately with the weather moving in it kept both my husband and I from sleeping. At least, once the medication kicked in I was able to position myself more comfortably. My husband excused himself to the couch. The Axert, at least, contributes to some sleepiness, so I had the benefit of a pill to help me off...I had originally wanted to sleep the thing off in the first place, but the world was working against me.

Come Give Me Some Love, I've Taken Shipload of Drugs

2008-03-06T21:53:00.002-06:00

I had my first ever acute migraine IV treatment this past Tuesday. Our weather here was less than optimal and even though I tried to arrange to make it out the door before things got worse, it wasn't to happen. I went anyway, and paid $100 out of pocket for the treatment. My appointment was at 10:30 AM, but I did not make it home until 3 PM due to the weather.

Having several severe attacks this past week had left me pretty desperate for some relief. I couldn't sleep because of the pain level, I couldn't get comfortable, and once again sitting up was the only way to dull the pain, except the light seared my eyes and I couldn't sleep sitting up...

The first dose of medication was Benadryl and Reglan for nausea. Waiting for it to dispense, I felt pretty angry and hopeless at the whole situation. I was mad that I had to come out in the weather, I was mad that I was in pain, I was mad that I had to get someone to drive me in the shitty weather, and I was mad, most of all, at the thought that I may be stuck with this the rest of my life. I felt mad that I occasionally get so angry at my sister, she made a sacrifice for me that day so I wouldn't be in pain and I feel ashamed of myself. She drove me and she kept calm, she helped me and she kept herself positive, even though I was mostly out of it for the drive home.

Second, I was administered Toradol to dull the pain. If I have to do this again, it's the Benadryl and the Toradol that makes me feel the worst. The Toradol burns like nothing else, and it's everywhere in your body.

Thirdly, they gave me DHE to abort the migraine. By this point I was feeling better, I was just happy to have pain medication, I guess, even if I did feel like I was being engulfed by the fires of hell by this point. Eventually, the burning faded, but another medication started it all over again. By this point, I was too out to care.

Fourthly, they gave me the magnesium. Magnesium is a helpful supplement for many who suffer with migraine, but we came to find out that it is definitely not the med for me. I ended up tossing my cookies with little warning. I was fairly surprised when it happened. But dammit, if I didn't feel so much better afterwards!

Next they gave me another shot for nausea and my stomach decided it wasn't finished with the magnesium. At that point I was mad, too doped up to do anything about it, and the snow was coming down like it hadn't snowed at all this year yet. The doctor's office gave us some bags and we were sent on our way.

The treatment worked. I had some residual headache last night but that's been it. I feel confident that the treatment works for me, and that's saying something because many don't find relief with it. I don't want this to become a regular occurrence, however...I hated sitting in that seat and I hated being shot up with medications that wipe me out and make me less than an optimal person. Migraine is taking some part of humanity away from me and I feel out of control. I know I'm out of control. But as long as I can write about this semi-rationally then I know I haven't lost all sense of myself.

Stop the Insanity!

2008-02-28T01:57:00.007-06:00

So, the NYTimes online is running a section that specializes in migraine blogs. This would be a blessing, if it weren't for the people who think they know all about migraines and the cause posting comments after the OP. I think that any widespread, responsible information about migraines is great (the disease deserves the exposure and the eradication of myths), but I do despise know-it-alls who think that just because they cut diet soda (or anything else) from their diets and their migraines stopped means that everyone else will have the same result. I get extremely worked up over people who post their comments at the end of a blog describing their miracle cures and the books that "saved their life". Good, you eliminated your triggers successfully and haven't had a migraine in months...That doesn't mean you don't have the disease still, it just means that you're controlling it with little to no medical intervention. The minute you stop controlling your triggers, it's likely your problems will pop back up. But that also doesn't mean that everyone can control his/her migraine the way you do. Me? I have no food triggers. I am at the mercy of hormones, weather, and light--all uncontrollable, all unavoidable, unless I rip my girl parts out and become a hermit in a hermetically sealed, devastatingly clean, humidity-controlled home someplace where the barometric pressure doesn't change and the sun doesn't shine 365 days a year. Wish me luck!

I'm not saying I know everything about migraines...Far from it. I'm constantly learning, and in the process, I've found that there really is no final word on "Migraine." We must all make our own informed decisions on how to treat ourselves, and this makes migraine confusing and harder to treat for many of us, and frustrating for doctors too.

Also, those of you who think stress is the cause of migraines? Please, shut up. No, really. Just stop. I may be a little more snarky at the moment and a little more honest right now because of how I'm feeling (period and an unrelenting migraine, and I can't sleep, I can't take my regular meds, and my vicodin has since worn off...), but telling migraineurs that stress is the cause of the migraines means you haven't done your research, so kindly step away from your mouth and disconnect it from your brain. Stress isn't even a trigger.

Migraines are caused by a genetic disease (with no cure!), a brain disorder related to a central nervous system oversensitivity. Triggers (weather, hormones, food, light) are things that cause that system to overload and trip the neurons and signal the start of the migraine attack (which is NOT just the component headache!). Stress can lower your resistance to your triggers, but it is not a trigger in and of itself. Coming down from a stressful week can also do the same; once you find yourself allowing a relaxing moment, the overwhelmed brain puts a halt to it as soon as you encounter a trigger event. I think this point is terribly overlooked and incredibly confusing for some, because what do you say to those who have little stress but compounding migraines? Usually it's, "Stop stressing and you'll feel better," regardless! How I hate that sentence!

I have no doubt that migraine is exacerbated by emotional components, and stress is related to emotions. I tend to err more towards the physical explanation of migraine however and rely less on a psychological explanation, even being a psychologist-in-training. There is no reliable proof that any one personality trait gives rise to a migrainous brain, and the physical explanations and biological studies far outweigh this particular myth. I am an artist, but I am not a Type A personality. I had a happy childhood for the most part and I'm successful today. I don't let anything stress me out if I can help it because I avoid my major stressors (driving unless I feel like it, mingling with people I don't know), but I cannot avoid my migraines. I know that letting my emotions get the better of me can make things worse, so I do believe in a mind/body connection, but it's my opinion that a physical cause is the root of migraine and that stress/emotions exacerbate an already upset biological function. I try to get regular massages and I've since started therapy again in order to address the havoc that migraines have begun to wreak on my life after becoming chronic, and I am hoping that they will help me.

And yes, people HAVE died from migraine. While the event is rare, migrainous stroke does happen, and it can be a killer! ...So those of you opening your mouth to this myth, too, please, stop perpetuating untruths!

It is, however, extremely frustrating and terribly heartbreaking to know that while I am stuck in my home, suffering, that people are thinking I am nuts, stressed out, drug-addled and unreliable as a friend or person in general. It's difficult to know that at any one time when I mumble about having a migraine that someone is thinking, "Just shut up and get over it already!" I can't even say "I have a migraine" to anyone without thinking I come across as fake and/or whiny. I don't even want to say it to anyone because it happens too much. I cannot wave a magic wand and make myself suddenly feel up to doing what needs to be done for anyone because I am having a hard time taking care of myself. I have so few good days that when I do I feel like making like a kid again and I am selfish about it. I want to do what I want to do, and that's all there is to it. If your day falls on that moment, congrats, you get me at my best. I seriously wish I could make people understand. If I had the energy for myself I'd have the energy for others and it would show. I can't just up and make myself available at any old time because that's not how chronic illness works. I have to seize the day when it becomes available, and it's all too infrequent anymore. I'm tired of being sorry to people who feel let down by what I cannot control, but in this case, it's your problem and not mine...And the same sentiment goes out to each and every one of you who treat migraineurs the same way everyday.

The passing thought that your "cure" will lead to freedom from pain, well, educate yourself, because we are not all the same cookie-cutter perfect migraineurs.

Have I given up?

2008-01-21T02:29:00.000-06:00

At what point does one concede or admit defeat to a chronic illness? Is it considered defeat when you sigh in resignation and reach for the abortive prescription right away, instead of considering how briefly or how quietly the migraine may run its course, if given the chance to do so?

I've always had migraines. Sometimes I think my decision to aggressively treat them has, for better or for worse, let a completely different monster out of the bag. I worry about it too much. I find myself self-analyzing every emotion and every word I say for a hint of a monster to come. Have I made myself overly neurotic about what might or might not happen over a course of hours? Sometimes, even after living with them for the majority of my life, I find myself aghast and unbelieving that the symptoms of pain to come or the hangover of pain past occupies so much time around that one agonizing phase. Friday I was almost manic, and I knew at some point, hours still ahead of me, that I'd be paying for the euphoric mood. And I did, later on, have a very brief migraine, likely brought on faster by the sangria I had at dinner. Both Saturday and Sunday were spent struggling to stay asleep to escape pain, but later both days I had migraines that didn't hurt so much as they kept me out of the loop. Sunday's was especially difficult, with mild pain but distinct nausea, and an overwhelming desire to just lay my head down and sleep. Sunday I reached for my triptans for the first time in a couple of weeks, and I almost cried having to do it.

It seems like I keep fooling myself that this is a passing thing, and when I despair enough I consider finding another therapist or pain management that could maybe help me learn how to cope and treat myself better. I find myself not coping at all anymore, really, anything more than reaching for the drugs or sleeping seems like too much effort. I don't even want to talk about it anymore, though it's an issue that needs to be addressed until I have found peace with the fact that I have this, and I likely always will, and that I carry a struggle that so many of us are also carrying, together, in an attempt to understand it ourselves, and to lend understanding to others.

I just don't know right now...I just feel that something within me has changed and I can't tell if it's acceptance or not. I feel alone, and scared, and possibly more scared than before the PFO struggle.

I've been away...

2007-12-29T00:51:00.000-06:00

Well, it's been a while, hasn't it? I apologize for it; I like to write but my heart hasn't been in it lately as I struggled with personal issues around the holidays.

I think I last left off at persistent aura; and my specialist prescribed me a higher dose of a different beta blocker in order to get the aura to quit. It took about a week, and things seemed to settle down thankfully. I didn't really want to schedule an appointment with yet another doctor to have my eyes checked--I mean, I would have done it but I dreaded it. The higher dose of Toprol also had an impact on the length of my migraines, so I still triggered just as much but they began to become briefer.

The PMA would have made it difficult for me to enter the study, as it was a variable that was not accounted for in the research. It's fine to have aura, they want you to have aura, but persistent aura rendered me into a different category for whatever reason. My brain was overexcited and was showing signs of not letting up. When it did, my place in the PFO study was all but guaranteed.

The next step was to come in for a confirmation TCD again. This would be the official data they'd use for study purposes, but they pulled my previous information as well. The second test showed numbers in the same range as the first, and again I triggered into a blinding aura that lasted 20 minutes only to dissolve into another excruciating migraine. At the time I was supposed to be reading the study papers and signing them, but I was blind and we hit another stumbling block. Was I or wasn't I allergic to nickel? The PFO closure device was made with nickel components, and an allergy to the metal would have me kicked out of the study right away. All of that work, lost, due to a metal allergy...

I signed the papers anyway (when I recovered), and the research group set me up for nickel testing with a dermatologist. To make this point short--I'm not allergic. At this point was given an electronic migraine journal which asks about medications and migraine symptoms and frequency, along with duration of the pain phase and its accompanying symptoms, along with how bad the pain was. At the end of 4 weeks the committee reviewed the information, and it was at this point that I'd either jump the final hurdle into the PFO study, or they'd give me the boot. The few days I waited for an answer had me worried, but the phone call finally came--I was accepted as a guinea pig.

I was sent to the researcher's companion cardiologist during the time period I kept my migraine journal The cardiologist is also participating in the study not just as a surgeon, but also for his own research purposes, which I see as a blessing to many migraineurs. If patching a PFO works, we have not only the support of many neurologists but also the support of some in the cardiology community. People who suffer with migraines can use all the backing that is available to them--the point where we are taken more seriously as persons with a disease rather than a containable headache is a day I hope I live to see. Next, I had, again, a heart echo that confirmed the presence of a PFO. The researchers said that after the last echo, I would be scheduled for the procedure, and that it would happen quickly.

No doubt was to be had they were moving quickly. Just over two weeks later I was unconscious, on the table, with doctors poking here and there through arteries in my legs...

The Great and Terrible

2007-11-18T22:11:00.000-06:00

Migraines are at once a gift and a curse. I know that many people regard them as curses only, but in the past year my migraines have taught me a lot about who I am and what I can do. I consider those lessons a gift, as my philosophy is that things happen for a reason.

At about the time things really began to fall apart for me, I started to reconnect with friends I'd gone to high school with but hadn't seen in a while, thanks to MySpace. I have learned a lot about who my true friends are, and just how long it takes to wear someone's patience thin. I have also learned a lot about coping mechanisms, which I often ignore in favor of trying to do what I shouldn't be doing. Hey, I said I learned, not heeded! Two weeks ago I had a migraine that pushed me to the brink and I STILL tried to put myself together to go out to eat with my husband. That dissolved into a lot of crying and drooling on the couch; I couldn't move without my head banging. I consider myself someone who can make it pretty far with a mid-grade migraine, and who likely shouldn't.

I've learned that sometimes I'm just going to have to stay indoors, which is not much of a pain for me as it is. I hate leaving the house and I like my quiet. Being a sick kid teaches you the value of books and art, and how to do it on your own. Migraines teach that, sometimes there isn't anything to do during a euphoric spell except draw. Or clean. But we'd rather draw.

I've learned that there is a point where I should stop caring about what others think or feel about my affliction; after all, if they are not going through it then there isn't anything they can possibly offer me if they do not have a PhD in neurology. And some Neurologists can't offer a lot, either. Your home-brewed remedies aren't going to work, I hate to tell you. How I wish they would! And your friend that has migraines who kills them with just an Excedrin? Likely doesn't have a true migraine. either. So I will thank you to not tell me what I should do for myself should I find myself feeling a little hazy; I have medications that work and I just underwent surgery to gauge its effectiveness on migraine frequency.

When I found out about my PFO, the next step was to find out what could be done about it. Or, in a PFO's case, what can't be done about it. Insurance wasn't going to pay to have the hole closed, not for migraines, and there was no proof that I'd had any strokes, despite the fact that my migraines rendered me numb and stupid sometimes. So, the next step was making it into a PFO/migraine study called ESCAPE. This process would test everyone's patience, most of all, my mother's, who wanted a fix NOW.

Topamax failed me, so I was swapped to Zonegran. My specialist didn't like waiting for the Zonegran to kick in, because if I were to make it into the PFO study, there was no time. I had to get the number of migraines I was having per month (at least 25) down to a number acceptable to the study committee. Topamax had to be failed before being considered, so that worked in my favor. I was swapped to Inderal LA, a beta blocker that actually made an impact on the frequency of migraines I was having within a month's time.

Unfortunately, it was during this period that I developed Persistent Migraine Aura; a period of neural overactivity that wouldn't baseline over days and days, that put me at higher risk for stroke. I went into aura before lunch one day and never really came out of it. I almost regretted mentioning it to my specialist, because it made all the work we were doing to make it into the study come to a grinding halt. So, my specialist upped me to 100mg of Toprol (as it is easier on asthmatics), and so we played a waiting game for another 6 weeks.

2007-11-08T01:25:00.000-06:00

It's difficult to put into words, adequately, what one goes through when they have a migraine attack. My week has been particularly difficult, and Wednesday brought me to an all-time low.

Monday night, I started in with the migraine. Prodrome settled in with confusion and slurred speech earlier in the evening, and some clumsiness along with it. I have this bruise on my finger...how do you do that without knowing how you did it? Prodrome, that's right. About 11 PM I took an Axert, when the pain kicked in, and fell asleep because it peaked around a 7 suddenly, and I got quite nauseous. About an hour after kicking the migraine (or so I thought), I was ill with some bathroom maladies I won't describe here. The migraine returned unfortunately, and I couldn't boot it no matter what I tried. So I began to move into Status Migrainous for the first time I can recall. It doesn't help matters that I also broke out into hives, as a reaction to the Vicodin I took on Wednesday morning, possibly.

I just couldn't move all day without being in terrible pain. Standing up or sitting down, it didn't matter. Either one forced the blood through my head with pain that made me think someone was repeatedly stabbing me in the base of my skull with a blunt object. Eventually I broke down and I couldn't take it anymore. I think sometimes that my husband puts himself elsewhere when I have a breakdown like that. I know I would. I know he can't stand watching it. I only sat in the floor and cried the desperate cry of someone who wished that everything would just go away in one quiet instance. With a migraine like that, the entire world is against you. Your body is against you. Your senses open the floodgates and it's an overwhelming feeling because sound is amplified; light is amplified, and you might as well be sticking pins into those related sensory inputs because it hurts so badly, and at least other people could see it and believe what's happening to you is real. You turn against yourself and you want to just give up the fight. It's your private hell and you suddenly realize why people who don't have migraines can't possibly understand what you're going through. I think one of my cats knows, though. She sat with me or slept on me about 90% of the day, and I welcomed the distraction. She's got better intuition and direct sympathy than most people I know.

However, I sent my husband out for food and for some Excedrin, which I haven't taken for a long time. This worked in my favor, because I took it with another Axert and finally the fog lifted. Within an hour, it was like night and day.

Relief floods you when you realize you've made it through another one. Just simply, easy relief. The world is righted once again and you don't have to fear your environment.

Next: More PFO! (cue dramatic music!)

6.5 Weeks: The Return!

2007-11-05T13:17:00.000-06:00

This week I returned to the gym. I need to drop about 50 lbs., I'm ashamed to say. Last year I dropped about 15, only to gain about 20 back. It's been frustrating, and I'll illustrate why.

In my last post I discussed my first doctor's visit, and the subsequent discovery that a hole in the heart may cause problems for people already prone to migraine with aura. The fact that I had an irregular heartbeat made me wonder if my problems were made worse by having the hole, and I needed to find out. We're all eager for a miracle cure when we find out about this hole, and the study results so far are encouraging for many of us.

I pushed my migraine specialist to give me the test to find the hole. He didn't want to, stating that even if I did have it, I was having too many migraines in a month to qualify for the study. A PFO cannot be closed in the United States for incidence of migraine alone; PFO must be accompanied by 2 strokes of indeterminate origin within a certain time frame, whether or not you are an individual with migraine is incidental to the stroke itself. This is how they began to discover that closing the PFO might help migraines--stroke victims and divers with the bends who presented with a PFO and had it closed reported fewer severe migraines. This prompted the neurology and cardiology communites to get together and begin studies on migraine patients alone. The majority of studies have been done in patients who also had stroke; now they are trying to isolate members of the migraine community who have not had a prior stroke who also present with PFO.

In January of this year, I had the TCD, Transcranial Dopplar, which is effective a detecting a PFO. You're hooked up to an IV of saline that is mixed with some of your blood to cause small bubbles, and then it's injected into your arm. The bubbles will pass into the heart, and if there is a hole present, they will move up through an artery in the brain. An ultrasound wand is held to the temple, and it will detect those bubbles. If a hole is present, a garbled "turkey" noise begins to emit from the ultrasound machine. They repeat this test twice, one at resting, and the other in strain, or, bearing down to force the hole open more to allow more material into the brain. A blip on the first resting pass indicates a hole and how big it may be, the second part verifies the hole and how easy it is to pass the bubbles through. i.e., how big the sucker really is when it gets going. My test came back frighteningly positive, on a scale of 1-5, 5 being the largest opening. I had a 4 on resting. That means that about 250-300 bubbles passed through my heart and into my brain. On the second pass, on strain, I went up to a 5+, which meant that there were too many bubbles for the machine to count as they passed through my heart and into my brain.

It's quite frightening when your own doctor is silent after the test is concluded. I was actually devastated. Here was a chance to find out if things were fixable, but apparently the hole was larger than anyone expected. Despite the fact that 25% of the population walks around with this hole, many people miss the fact that even if you have it, that doesn't mean you will get migraines, and that may be due to the size of the hole in individual people. A 1-2 hole may cause someone problems from time to time, if ever. But a 3-5 is a different matter for many people.

At the same time, it explained a lot. I felt that it was tied into my fatigue as well as my migraines. I felt that it was tied to my poor performance in physical activity, too. When your heart shunts bad blood back and forth to organs and the brain, there will be a lack of oxygen to keep the body going as it should. The result is poor performance and that overwhelming fatigue that I've fought with since I was a teenager.

After the TCD, I triggered into one of the worst migraines I have ever had. It's a side effect of the test for many, unfortunately. I have never had a migraine thunderclap me like this one did, but 20 minutes later I pretty much wanted to die. Luckily my doctor had stocked me with Axert before I left.

My specialist, who is now teamed with another in the same office for my case, put me on Topamax (an anti-seizure medication) immediately to reduce my chance of having a stroke by working to prevent my migraines. I dropped my combo birth control in favor of a progestin-only method as well. Unfortunately, Topamax was not the drug for me. I didn't tolerate it well to begin with, and I can admit that I likely did not give it enough of a chance to work. But it was almost unbearable to work on the medication, and I was taking 16 credit hours of classes on top of my full time job.

Next, I saw a cardiologist who would confirm, through a thoracic ultrasound that I did, indeed, have a PFO, and a heart murmur. I've heard conflicting stories about PFOs causing murmurs, some say they don't, other reports say they might. In any case, I had a murmur and a hole.

The rest of the year would dissolve into the stress and struggles of making it into the ESCAPE migraine/PFO study.

The blue pill, or the red? How 'bout ALL of them...?

2007-10-25T23:37:00.000-05:00

When I had my first appointment, I didn't really know what to expect. I didn't have a migraine diary, so I did not have anything to really bring to the table, so to speak. I just knew I was suffering.

My mom went with me; but I saw the doctor by myself the first time. I don't recommend this approach; you should always have someone with you when speaking to a specialist. They may hear things you don't. It took a while, because I spoke with the nurse practitioner first. I assume it was some sort of screening process, because she had a meeting with the specialist prior to his appearance; he said they'd talked over my time with her and they were sure I fit the criteria for migraine (resisting sarcasm here). I felt somewhat dismayed with my first appointment, but the doctor was aggressive about treating my problems so I also felt hopeful.

He was sure that I was going through rebound. At the time, I was taking a lot of ibuprofen for my head. It never impacted the pain, but it didn't stop me from trying. I was also taking Excedrin Migraine around my cycle, but very tentatively. The stuff really hurt my stomach, and I was already sick during that time of the month anyway. So I was making myself worse by taking too much OTC meds, causing MOH. I'm not surprised, because I always had a bottle of Advil or something on me. People joked about it at work a lot. I joked about it. Turns out, it's not so funny anymore. My specialist actually treated a woman who was taking 30+ pills a day for her migraines. I was maybe taking 2-4, but whatever the number, it was still too much. This is somewhat funny to me, in a wry sort of way, since I don't have an addictive profile in any way. I can quit most drugs cold turkey, and I don't smoke. My bad habits include buying a lot of action figures, so I guess that's an addiction, but I don't typically ingest things and get hooked. But my brain snuck this one past me, and I felt particularly stupid. I have a strong disdain for Advil/Tylenol/Aleve commercials at this point. Made with love? Yeah. Your drugs cause rebound and can trigger chronic, transformed migraines, way to go, OTC companies! Clap on the back! Your commercials suck! ... ......

So, the specialist put me on a cycle of pills to assist in withdrawal and attempt to relieve the migraine fallout I was expected to have over that time period. I was on a DHE supplement, a 5HTP supplement, a muscle relaxer to help me sleep (because my sleep habits are bad to begin with and that only helps a migraine into fruition), and an ibuprofen mix that had no rebound profile, to control pain. I took the DHE as needed when head pain did strike; unfortunately, none of these drugs did anything whatsoever. I can't remember going through withdrawal, either, but then I don't typically experience problems with addiction or from dropping things cold turkey..But I can express that I've not had much experience with anything stronger than Advil or caffeine, or xanax.

So after a month or so of pussyfooting around with these medications that did nothing, we were ready to try something new. Nortriptyline, combined with the muscle relaxer. You guessed it; they did nothing. But an anti-depressant sometimes takes a few months to take hold. I figured I would give it time.

It was during this time period that my mother had alerted me to articles discussing a hole in the heart that was being linked to migraines. I felt like someone had hit me square in the face; when I was 14, after having my one and only panic attack ever, we discovered that I had an irregular heartbeat. I now thank that panic attack--sometimes I think God works in truly awesome ways, even if we don't get the answer until years upon years later. Without knowing what I did, I would never have begged my specialist for the test that rules out this particular hole, and my research into PFO--Patent Foramen Ovale--would never have gotten me to where I am now.

When to Seek Help

2007-10-23T18:31:00.000-05:00

Since I have always had head pain, especially notable during adolescence, and since I'd seen a doctor in that time period who wrote the pain off as migraine (and obviously did not know how to treat it), I didn't think much about seeking out a doctor for my troubles until it became apparent my troubles had changed and were becoming steadily worse.

Migraine is misunderstood by many. It's apparent that not many doctors know how to treat migraine, nor are many ERs accommodating of the migraine patient. Migraine is the disease that is known about by so few in the population, that many don't realize it as something more than just pain. Saying "I have a migraine" will get nods of sympathy, but not much else. People who suffer from migraine are ostracized as hypochondriacs, or people who have too much stress. Or we're labeled as people who have psychological problems that cause us to be high strung. I'm sorry, but I'm generally laid-back, and it takes a lot of poking for me to get truly angry enough to act on my convictions. My life is generally stress-free, though as a young adult I take enough hits from working full time and going to school, and taking care of bills. Life is compounded sometimes; I don't know anyone my age who isn't worried about something or other, and the majority of them do not have migraines that anyone is aware of.

My Grandmother died in 2006. It's important to note that stress is not a migraine trigger, but it's a factor that makes us more susceptible to our triggers. What we went through in 2006, coupled with hormonal changes, likely brought on the cacophony of new migraine symptoms I experienced...And have been experiencing since.

My Grandmother had a stroke early in '06. This was devastating, because all of the love in the world couldn't rehabilitate her enough to bring her home. We had to give her up to a nursing home. My mother worked hard to visit her everyday; my sister and I visited when we could which was at least once a week. It makes me feel guilty, but I woke up constantly too tired and with too many headaches to get myself out of bed to visit most days. When my mother contracted the potentially fatal C. Diff bacteria (or I should say, it overgrew and mounted a hostile takeover of her intestines), we were thrown into a pandemonium. The same day she went into the hospital I was rear-ended in my vehicle. During all of this, my husband was on a business trip. My mom was trying to keep it together and we were all trying to keep it together, because my Grandma and my mother really couldn't bear to be apart. It was some time before my mother could visit my Grandma again, so my sister and I were responsible for her needs...and one of us was there everyday that my mother couldn't be. It was difficult. I wouldn't change it, but it was no piece of cake.

She passed away shortly after that; another stroke. August passed and September came upon us, and it was evident that my migraines were changing...or at least, they were becoming more frequent and therefore I was noticing symptoms I hadn't paid any attention to: increased aura activity, like loss of hearing, ringing in the ears, numbness and tingling of extremities (something I'd noticed a couple of years prior, actually), but most of all, slurred speech and difficulty with memory, along with a lot of clumsiness that would last through an attack.

These last few symptoms made me search out a headache specialist in my area, and I got very lucky as his office is no further than half an hour's drive from my home. I had an appointment made months down the line, but was able to get in earlier since someone canceled their appointment. I've been lucky; I haven't had to mess with asshat doctors who didn't understand my problem. Many migraineurs don't strike gold the first time around and they become jerked around by neurologists who give up, so they in turn become less hopeful. But the first line of defense is this: do your homework, and you'll know if your doctor is a quack who doesn't know anything. I'd already been doing my own research into migraines and began to join forums to search for guidance. It was on one of these sites I found a recommendation to my doctor's doorstep.

Next: First appointment and some new medications.

4 Stages

2007-10-22T01:36:00.000-05:00

I promised the 4 stages of a migraine attack, so here we go, right into it, shall we? Remember that these stages don't necessarily have to occur in order for someone to experience a migraine, or, they may skip stages. Not everyone will have a cookie-cutter migraine experience every time, though to me it seems like sometimes mine will go through "exclusive" phases, where I'll have a handful of migraines with the same symptoms, and then I'll rotate to a new pattern.

1. The Prodrome: The prodrome of a migraine can occur days to hours before onset of the pain phase. This period may be marked by fatigue, food cravings, extreme thirst, depression, and excessive urinating, among others. Many people with migraine, until they understand that there are several phases to a migraine, may not even realize that this period can indicate an oncoming attack. It's taken me months to figure out that when I crave gummy bears and water simultaneously, in a few days I'll likely have aura and then a migraine. I also get incredibly depressed and cranky right before one hits...This is usually my penultimate warning sign.

2. The Aura: The aura phase of the migraine is, at once, the most frightening and most fascinating aspect of a migraine. It's influenced writers and artists, and I'm sure it's sent more than one person to the doctor with fears of going permanently blind. Aura is the part of the migraine that occurs when over-excited neurons fire in a wave across the brain, causing all sorts of haywire for the sufferer. Migraineurs with aura may experience visual disturbances resulting in warped images, black holes in the vision, tunnel vision, loss of peripheral vision, and the most bizarre of them all, the scintillating scotoma. The scotoma may begin in the corner of an eye, with a flashing, zig-zagged line that makes its way across the field of vision, ultimately taking over and moving, sometimes, into the other eye's line of vision as well. What's fascinating about this, is as the scotoma moves across the field, it's a representation of the neuronal firing across the cortex of the brain. Generally within 20 minutes, a scotoma has trailed off and vision is restored.

Other phenomena has been associated with aura, such as auditory and olfactory hallucinations, clumsiness, confusion, tingling of the lips, face, or scalp, or numbness of extremities. Aphasia, or difficulty finding words, may also play a part in aura, but may be more likely to occur during the migraine's most recognizable phase:

3. The Pain Phase: The pain phase comprises the migraineur's worst nightmare. The pounding, exacerbating pain that can be accompanied by nausea and vomiting, sensitivity to light and sound, and pain that gets worse if one moves. The latter feature is particularly helpful--don't know if you're having a migraine? Bend over. If the pain or pressure gets worse, and your head feels like it's pulsing with pain, it's a migraine. This may not work for everyone, but in the majority of cases, I'd say it's likely a fantastic clue. The pain phase can last from a few hours to a few days, but anything over 72 hours is regarded as Status Migrainous, and puts the sufferer at a higher risk for stroke. In this instance, emergency treatment for the resolution of the migraine is recommended, and this is why we are urged to take our triptans early in the attack. Some people become severely fatigued during the pain stage; others may become excitable.

4. The Postdrome: The postdrome is the period after the migraine, and may be marked by feelings of being "hungover", out of sorts, with lowered intellect levels and fatigue. Others may become euphoric. What's known about this phase, is that it can take some time after blood flow has resumed normal activity in the brain for the brain to resume normal functioning...Therefore, many of us keep on keepin' the stupids for a while after the pain has subsided.

To read more about the 4 phases, read patient advocate Teri Robert's excellent article, here:
http://www.healthcentral.com/migraine/understanding-migraine-29375-5.html

While you're at it, there's a wealth of information that can be found just starting here:
http://www.healthcentral.com/migraine/

We've got a support forum there with many people who experience migraine on a day-to-day basis. And for an honest, openly written account of migraines and treatments and how to deal, you can find Teri Robert's book, "Living Well with Migraine Disease and Headaches" on amazon.com.

No Energy

2007-10-17T21:28:00.000-05:00

Truthfully, I don't have the energy to post much right now. So our 4 phases of a migraine attack will have to wait.

I woke up with a very bad migraine this morning. Well, actually, I'd had it all night but it wasn't as bad when I went to bed--generally I try to kill them that way and then I don't have to waste the medication which costs a lot but is limited. I paced my hallway and banged my head on the wall a lot, and cried a lot, and unfortunately I had no meds to rescue/abort with. I had to call my doctor to make sure that I could take a vicodin along with the aspirin and plavix that I am on, and prior to that both my husband and my mom tried to nudge me to the ER. My pharmacy wasn't open; I couldn't request a refill on my triptans.

I refused to go because I wanted to talk to my Dr. first and I felt it would be a waste of time waiting to find out if the ER docs would take me seriously. I felt I could get an answer from my Dr. before I'd be treated at the ER, especially if they were flooded with traumas or others who needed attention first. It's a long story, but I was able to take my vicodin and stop pacing, and eventually I was able to rest. Jeremy left work early to pick up the triptan samples my doctor held for me (he's good like that) since I could not get to the pharmacy, and he took care of me the rest of the day. Tonight I am worn out and drained, but I am in no pain for the time being.

Genetics, part 2

2007-10-16T14:00:00.000-05:00

Last night was kind of rough...Not only at work but after I came home, too. I was hit by a migraine that got worse after I went to bed. I had to take my last triptan. Now, I fully expect to still have cycle-related periods. Having a PFO closed is not going to impact a hormonally triggered migraine much. But it's been 6.5 days since I'd had one, and I consider that a small victory. Of course, the Toprol sometimes kept me quiet for a week or two here or there, but any stretch over 2 days is a nice one. I had extreme light sensitivity and nausea last night; I can't remember light ever being that bright though I've always had light sensitivity with or without migraine.

And so, on to genetics again. My father had knee issues too, which is why he might have taken so many drugs as well. But we also knew he had headaches. We'll just never know for sure. However, interestingly enough, those migraines confused with sinus problems? My mom gets 'em. Yep. She has a more mild migraine profile than I do, but you can imagine the relief I had when sending her articles and having her verify symptoms. I'm not a doctor, of course I can't diagnose her, but she reacts to the medication in the fashion associated with those types of migraines, and she has all of the symptoms. I was also told that my great-Aunt on my mother's side got them as well, and my Grandma often told us that her mother used to get bad headaches associated with all the hair she had. Funnily enough, migraines triggered by heavy hair is a known phenomena, especially in India. So did she have migraines? We don't know. But all I can do is suspect. It doesn't matter either way; it's likely both of my parents had them, and I know for sure that at least one of them does. I lost that particular genetic lotto, but we all have to work with what we have, right?

Migraine is a fickle disease. There's evidence that in some people, it just gets worse over time and is classified as a progressive disease. For some, they stop having them at any age, and women, especially by being pregnant. Others can start having them at any age. I seem to qualify for the progressive sect, go me. Many people are affected by different types of migraines, classified as hemiplegic or basilar, or the type I get, migraine with aura (formerly known as classic migraine). There's slient migraine, as well, labeled acephalgic, known by the occurrence of aura without pain. Acephalgic migraine is one example of a migraine skipping one of the 4-stages typically associated with an attack, namely the pain phase. Silent migraine typically involves an aura of some sort. Many people can suffer a combo of these different kinds, and not every one of them will proceed in the same manner as the previous one, or one that happened weeks ago.

Next up, the 4 stages of a migraine attack, and what finally forced me to seek a specialist.

Past and Present, part 1

2007-10-12T15:35:00.000-05:00

Migraines are genetic. Chances are, if you have a parent who has migraines, there's a 50% likelihood that you will also get them. If both parents have them, then your chances climb to a frightening 75%.

I always suffered from regular headaches, from as early as I can remember. I was also always a sick kid, suffering through repetitive sinus infections, colds, and stomach flus. When I was around age 2, I almost died from a lack of essential nutrients in the formula I was taking--my mother couldn't produce breastmilk and the formula I was on nearly killed me due to its inadequacies. When I was around 12, I contracted mono. I've always been very tired, sleeping for 10 hours at a time, only to get up for 2 and then nap for another 3 right after that. All of these have made me a prime candidate for being called a hypochondriac by most people. I also have allergies and asthma, two conditions that are comorbid with migraine in a high percentage of the sufferers. It makes sense; allergies and asthma are both products of a body that is sensitive to the environment around it, and histamines are even released during a migraine attack, which is why benadryl is sometimes useful in treating a stubborn migraine attack. Many people suffer needlessly with "sinus" headaches, never realizing that what they may be experiencing are, in reality, migraine attacks. These attacks can commonly occur on one side of the head and may cause pain around the temples, eyes, and may even cause runny eyes and noses. Unfortunately, so many people overmedicate with the wrong sinus medications, and one clue that your pain is a migraine as opposed to a sinus issue is when the pain does not go away after the administration of OTC sinus medication.

Earlier than my first aura, but only by a couple of years, I was taken to the doctor for my chronic headache problems. I don't remember the visits much, nor do I remember the diagnosis. My mom says that I was diagnosed with migraines, but this meant little to a kid at the time, and it meant little to a family that was unaware of the genetics it carried and passed on. My family was only aware of a child that just hadn't ever been very healthy.

You see, I strongly suspect that my father suffered from migraines. I will never have proof, as my father passed away when I was 18 and he didn't talk about himself much, but my suspicions are based on the witnessing of his drug habits. It sounds funny to say that, but there was never a time when my dad didn't have Excedrin on him. If his head hurt, he'd reach for the bottle and pop a couple. He often did this several times a day, something I was privy to when we took road trips together. The problem with over-the-counter medications, however, especially in terms of dealing with migraine, is clear-cut, yet one the general public is mostly not aware because OTC companies don't put warnings on their bottles. But taking more than 3 doses of OTC medications weekly for the treatment of migraine or headache can lead to something a bit more sinister: Medication Overuse Headache, or for simplicity's sake, MOH. If you treat a persistent migraine by taking more than 3 doses per week of an OTC, your brain recognizes the medication true to form, and when you stop the medicating, your brain triggers a migraine in order to get more of the drug. Sadly, many cases of MOH lead to transformed headaches; the kind that may eventually evolve into chronic migraines. I've dealt with this, and it's something I plan on talking about here in the future. But for now, this information is useful in order to place a link back to my father, whom I won't ever have a clear answer from. I'm sure he developed MOH, and in time, chronic transformed migraines. I just have no proof.

When I was 12, I started my period. But it wasn't until I became more regular around the age of 14, that I began to have aura. I didn't always have pain following the aura, either. The first time it happened, I just shrugged it off. By the second or third time it happened, like any migraineur who has no clue about what they are going through, I thought surely I had a brain tumor or something. In a panic one day, and being all but blind in both eyes due to the flashing zigzags, I called my mom who was being driven on a business trip with my father. My dad hurriedly took the phone from my mom and told me that I needed to go lay down in a dark room and try to sleep, that things would be OK eventually, and that it would go away. This was my first "true" migraine experience that I can recall...And after that my father never spoke to me again about it. Trusting kid that I was, and lacking the migraine education that I now have, I never gave a second thought as to why he never got terribly upset nor tried to explore why his daughter was having fits of blindness every once in a while. It wasn't something he ever spoke to me about again, either.

From that point on, my major migraines became associated with my periods. Every once in a while I would have them outside of my cycle, but rarely would they be incapacitating. I never threw up, though I was nauseous plenty and often prayed that I'd toss my cookies just to feel better. I still pray that sometimes, but it never happens. Likely I had them more often that I realized, just without aura and very mild, something I could function on, and something that I never tied to my clumsiness, dizziness,or inability to properly use the English language sometimes. Not many people were openly sharing information about migraines at the time (especially on the very infant internet...I mean, I used CompuServe!), so all I could ever find as a teenager were small blurbs in the doctor columns in the newspaper. One blurb told me that what I experienced was aura and that if I popped some ibuprofen when I had one I could likely avoid pain. It was a tactic I soon began to employ, and would later regret.

Next: More genetics and events continue to unfold.

Prologue and Over the Under

2007-10-11T14:16:00.000-05:00

I started this journal to keep my migraine trials separate from my usual journal that many others have access to. Over the past year, my personal journal has been transformed into a near daily, repetitious log of doctor's appointments, tests, and suffering. Since I've gone through a long journey this year, and have all but completed it, I thought it was time to separate issues and chronicle my life with migraines on a separate blog. My hope is that anyone who sees my journal and shares the pain of migraine will find a friend and some knowledge, and more importantly, that strangers to migraine will gain an understanding that this is an affliction with which millions of Americans suffer, but for whom it is an affliction misunderstood, misdiagnosed, and mistreated.

At the heart of migraine is neurological disorder, related to epilepsy. The overexcitability of a highly-tuned nervous system (that we somehow evolved with even though we don't need it as much today) that encounters a trigger event (like food, changes in weather, or hormones) causes, for some migraineurs, for the neurons to fire in a wave over their brain. This results in "aura", which can include loss of vision from scintillating scotoma, olfactory or audio hallucinations, or numb extremities, among other events. Many of us find ourselves unable to find words or speak right (aphasia), and we may lose sense of balance. Aura is a rarity among many who suffer from migraine, but as frightening as it is, it serves as a warning that pain may follow not soon after the wave has completed its journey across the cortex, and it allows us to medicate as needed. Others may not have aura at all, and be affected on by the pain phase.

The pain phase is the most widely recognized aspect of migraine. "Migraine" is often abused by people who have only very bad headaches; and migraine and headaches are two different events within the brain. A migraine causes the blood vessels in the brain to shrink and then to dilate, causing inflammation in the tissues surrounding the brain, which causes the pounding frequently associated with migraine. A typical headache, in opposition, simply causes the blood vessels to narrow, and can be resolved with OTC medications more often than not. Misusing the term "migraine" for a bad headache does no one any good. And if you're not sure if what you are having a migraine or a headache, be careful on the doctor you choose to see; many are not clear on what's what either.

I've always had migraine-related phenomena, since I was a child. Or at least I believe what I experienced was Alice in Wonderland Syndrome, along with motion sickness, which is also a precursor to migraine in later life. I would often experience a sense of distorted time and space, which included feeling as if I were detached from my own body; that my body was acting on its own in an unfamiliar and changing landscape. Time did not move, but people who moved within the time-stopped environment moved slowly as if inhibited by the clock. These episodes always lasted from 10 minutes to half an hour. I always did roll with the punch, so to my logical processing I thought this was something everyone else experienced every so often too, otherwise, why would it happen to me?

It wasn't until several years later, just recently, in fact, that I discovered that this had a name, Alice in Wonderland Syndrome, and it is generally rare for even migraineurs with aura to have experienced. AWS is termed so for the author of "Through The Looking Glass," because it's believed that he suffered from migraines and AWS as well, which gave rise to the environments and experiences that Alice encountered in his books.

In my next entry, I'll explore the genetic link and how migraines first began to really impact me as an adolescent, and my experiences with my first auras.