Persons who do not suffer an invisible illness/disability do not know what it is like to go through a personal daily hell, imprisoned in a body that doesn't do very much of what is asked of it, and forces you to make decisions you might otherwise never have to even contemplate. Although typing words into your blog or social media statuses about your daily struggle may come close to relating those struggles to a world that misunderstands, it will never be as effective as the life-altering event you have experienced until they also experience something similar. I find myself often frustrated, without the proper words to express the emotional and physical upheaval that Migraines have wrought in my life. I am sometimes too unemotional - too detached from my own suffering even though there are days when I feel as if my world is collapsing around me while I have absolutely no control over anything that goes on. I temporarily lose grip on reality - a side effect of the depression I struggle with - but I generally bounce back soundly until a Migraine "breaks" me again. I have written all these years about various things, but if I could write something I could be vaguely satisfied with that might come close to describing my life, I hope that this post might produce that satisfaction. It is my hope that you can read this post and imagine, if only for a few moments, how you might feel if this were your life.
Imagine working in constant pain, and working very hard to smile, having to hide reality so well that your coworkers take it for granted that you are okay most moments. Imagine having to tell people you can't work for them because you have to protect your body and the inevitable problems that might result from extending your schedule just a smidge later than what your body is used to,
Imagine people never believing your pain is really that bad. Despite the fact that people get sick all the time, for some reason, you're disbelieved. Imagine that people make it into some sort of sick contest where you can't possibly be that sick or in that much pain, and being told that you don't know what "real pain is" while they know. Imagine being belittled.
Imagine that your favorite hobbies have to be scaled back or eliminated, because you cannot participate in them without a worsening of symptoms. Movies, video games - my hand-eye coordination is now gone, so I don't play games as much anymore and I cannot watch my husband play games most days because it causes nausea. When I was younger I could finish a 900+ page book in one 10-hour period (I speed-read). Now it sometimes takes months. I have to take frequent "easy" book breaks.
Imagine that a simple 6-hour workday is all you can handle and even after sleeping 8-9 hours the night before, you must still come home and decide between a snack or a nap - and the nap is generally more important than the food.
Imagine being on a rigid sleep/meal/dosing schedule that doesn't allow certain activities or foods to happen unless you plan ahead for the migraine you know you are going to get just by deviating from that schedule by only a few hours. Imagine the backlash your body produces for days - the nausea, head pain, muscle pain, and fever, all working in concert with one another to effectively put a stop to all of your plans except one - make it to work because you have to pay your mortgage.
Imagine violating your own morals to try something, anything that might work for your pain because you want to escape it so badly - and being demonized by certain individuals for having the strength to successfully challenge your own thoughts on the subject and realize that your moral stance was wrong, only to have them continually look down their noses at you because they still feel morally superior.
Imagine looking into your husband's eyes and seeing the suffering there because he wants to do something for you so badly to fix it, but he can't, and your heart breaks because you are putting him through this.
Imagine taking 25 different medications, dealing with side effects, still dealing with your disorders, and even though you can laugh about your "drugs", it still hurts because you know people think you're the weakest individual because you're "over-medicated." But I know, in my heart of hearts, that I stand stronger than any one person who has never had to deal with this - that my will is stronger - despite the medications and the bad days.
Imagine not being able to drive very far or often because you are a road hazard, not only because of your disorder, but because of your medications. Imagine needing people to drive you long distances to get where you need to go to accomplish certain tasks. Imagine being stuck in your home for days at a time because sunlight - the fictional vampire's enemy - truly is your enemy. Imagine coming up with ideas for vehicular and home modifications to make suffering your condition easier.
Imagine putting yourself into a situation that might be your miracle "cure", such as two heart surgeries, because you know and cannot stand that you'll live your life out in that much pain. You're desperate, so you'll take the risks and run with them, laughing at the gods as you do so.
Imagine knowing you won't ever have children because you are too sick to take care of them. Now, imagine everyone around you telling you how "you'll adjust" and missing the fundamental point of it all. I don't want to "adjust". I am sick. A child is hard work. It is hard work to manage my condition. My life is hard fucking work - I am angry a lot, lost a lot, bone-weary all the time, distant and detached at times because my survival depends on it. And you want me to foist these problems on a child as well as possibly hand these diseases down? I would not be a happy mother if my children inherited my diseases. It would break me.
Imagine any number of scenarios...And be happy that you have your health, those of you who do. And don't belittle those of us who must face each new day with an awakened sense of purpose and a struggle to conjour the will to keep going.
Monday, February 13, 2012
Saturday, February 4, 2012
"Lily's Mom": A Movie Review
Wow! It's been a while wince I've posted here! Time flies when you aren't having any fun.
I suppose I should alert my readers that I do volunteer work with the NHF - more specifically, I was given the title of Patient Advocate Coordinator for the St. Louis area. Right now I'm focusing more on the volunteerism and less on the coordinating, but we should be working on some ideas in February to get this machine up and running, I hope.
I would like to alert my readers to a project my friend Kelly Smith Wahle and author of the Fly With Hope blog is working on. Project Migraine Hope is a video challenge of sorts to help spread the word on migraine awareness. I urge you to participate - the more the merrier, and the better to destigmatize migraine!
Now, on to what the blog title alludes to - a movie called Lily's Mom, and my subsequent review. The movie was disappointing in many ways.
First, the technical aspects of the film. It is not a polished movie to say the least. The soundtrack, in places, is ill-timed and jarring. Sometimes I had a hard time understanding the background elements in place throughout the counseling scenes; were they meant to represent the visual overstimulation migraineurs face throughout the day? I can't tell you. Sometimes the image flickers or goes out, and again, it's confusing to say whether this is due to poor camera work and a low budget, or to show the visual problems a migraineur encounters during an attack.
Lily is a girl of about 7 years of age. She lives with her mother, Mary, a chronic migraineur, and her stepfather, who is increasingly threatening to Lily and Mary. Through the movie, we discover that Mary's mother, Darla, is also a chronic migraineur living on disability, and thus a genetic link is established right away. Mary's sister Claire is unemployed, and mooches money off off Mary constantly, while Darla babysits for Mary as she goes to a job that can be considered a hostile work environment. Mary's boss, Hal, is somewhat of a tyrant, threatening Mary with termination constantly and pushing extreme deadlines on her at every opportunity, who also keeps her under strict supervision because the work he asks Mary to do for him, while never defines, is sneaky and illegal. With the threat of losing her job imminent, and her husband's unemployment hanging over their heads as well, we eventually learn that Mary and her husband lost a young son shortly after birth due to unexplained circumstances. Mary's husband, Mike, becomes a cheating alcoholic and holds Mary's ever-increasing medical expenses over her head as money he wants back because she "owes him." As you can probably tell, Mary leads a very stressful life, which, over the course of the film, never becomes easier. though with the guidance of the counselor, Mary does eventually become self-assertive and self-sufficient, and the only bright spot in her life is her daughter, Lily.
Throughout the movie Mary is seen wearing sunglasses. She sees a few doctors, who only feed her more and more pain pills that don't work for her condition. She even sees a "quack doctor" (listed in the credits, no joke), who has put together his own supplementation regimen and urges her to use his pills instead. During her "session" with this doctor, he simply rolls the bottle of pills over her stomach and calls that that.
Eventually Mary makes it to a headache specialist, but there's little to go on in these scenes, as scant as they are. One can make the assumption that Mary lives with chronic Migraine, but she is never given a solid diagnosis in the film - her condition is simply referred to as "headaches". I won't get up on the "migraines aren't headaches" soapbox again, but this was a very frustrating point about the movie. We also never see exactly what it is the headache specialist does for Mary - what he recommends, what he prescribes, what kind of relaxation techniques he might want Mary to try. It's never even quite clear that what Mary has is a debilitating disease that wreaks havoc on her life. We never seen migraine rear its ugly head except for in the form of sunglasses or a pinch on the bridge of the nose - but what there are copious amounts of are the stressors in Mary's life. There's no prodrome, no aura, no postdrome, no days spent in bed, no vomiting or soirees with the bathroom, and one gets the sense that Mary honestly doesn't have that much of a problem even though her pain is frequent enough to cause her to lose her job, and she tells one woman in her office that "perfume triggers me." There's a general disagreement in the migraine community about what the exact role of stress is on migraine, but we know it contributes to some degree...but it is not the end-all be all of contributing factors, and more than anything, it shows migraineurs as overly emotional individuals. If a migraineur becomes overly emotional, it's because their pain is terrible and never-ending - not because they were that way in the first place.
The major problem with this movie is that it was an excellent opportunity to showcase what a migraineur goes through - the nausea, vomiting, over-sensitivity to other triggers and environments, but instead, it focuses on the emotional stressors in Mary's life and glosses over everything else. As a migraineur, frankly, this movie offended me. It had so much potential, but it was wasted on focusing on the problems Mary has in her life, which, granted, could be contributing to her migraine frequency but doesn't really bother to explain migraine in any other way. The approach is a devastating insult to people who deal with this disease - everyone in life has any number of emotional stressors in their lives, and many of them never have a migraine. This movie was a missed opportunity to explain migraine and the impact it makes in the sufferer's life, their families' lives, and how it ripples out and affects everything else too. The biggest offense here is that the movie was written, produced, and directed by a headache specialist who should know better.
I honestly can't recommend this movie for any migraineur - and I am just being honest in my review, as terrible of a review as I may have just given.
In the end, Mary throws away all her pills because "they don't work." and that's it. End and roll credits. I mean, seriously, what?
I suppose I should alert my readers that I do volunteer work with the NHF - more specifically, I was given the title of Patient Advocate Coordinator for the St. Louis area. Right now I'm focusing more on the volunteerism and less on the coordinating, but we should be working on some ideas in February to get this machine up and running, I hope.
I would like to alert my readers to a project my friend Kelly Smith Wahle and author of the Fly With Hope blog is working on. Project Migraine Hope is a video challenge of sorts to help spread the word on migraine awareness. I urge you to participate - the more the merrier, and the better to destigmatize migraine!
Now, on to what the blog title alludes to - a movie called Lily's Mom, and my subsequent review. The movie was disappointing in many ways.
First, the technical aspects of the film. It is not a polished movie to say the least. The soundtrack, in places, is ill-timed and jarring. Sometimes I had a hard time understanding the background elements in place throughout the counseling scenes; were they meant to represent the visual overstimulation migraineurs face throughout the day? I can't tell you. Sometimes the image flickers or goes out, and again, it's confusing to say whether this is due to poor camera work and a low budget, or to show the visual problems a migraineur encounters during an attack.
Lily is a girl of about 7 years of age. She lives with her mother, Mary, a chronic migraineur, and her stepfather, who is increasingly threatening to Lily and Mary. Through the movie, we discover that Mary's mother, Darla, is also a chronic migraineur living on disability, and thus a genetic link is established right away. Mary's sister Claire is unemployed, and mooches money off off Mary constantly, while Darla babysits for Mary as she goes to a job that can be considered a hostile work environment. Mary's boss, Hal, is somewhat of a tyrant, threatening Mary with termination constantly and pushing extreme deadlines on her at every opportunity, who also keeps her under strict supervision because the work he asks Mary to do for him, while never defines, is sneaky and illegal. With the threat of losing her job imminent, and her husband's unemployment hanging over their heads as well, we eventually learn that Mary and her husband lost a young son shortly after birth due to unexplained circumstances. Mary's husband, Mike, becomes a cheating alcoholic and holds Mary's ever-increasing medical expenses over her head as money he wants back because she "owes him." As you can probably tell, Mary leads a very stressful life, which, over the course of the film, never becomes easier. though with the guidance of the counselor, Mary does eventually become self-assertive and self-sufficient, and the only bright spot in her life is her daughter, Lily.
Throughout the movie Mary is seen wearing sunglasses. She sees a few doctors, who only feed her more and more pain pills that don't work for her condition. She even sees a "quack doctor" (listed in the credits, no joke), who has put together his own supplementation regimen and urges her to use his pills instead. During her "session" with this doctor, he simply rolls the bottle of pills over her stomach and calls that that.
Eventually Mary makes it to a headache specialist, but there's little to go on in these scenes, as scant as they are. One can make the assumption that Mary lives with chronic Migraine, but she is never given a solid diagnosis in the film - her condition is simply referred to as "headaches". I won't get up on the "migraines aren't headaches" soapbox again, but this was a very frustrating point about the movie. We also never see exactly what it is the headache specialist does for Mary - what he recommends, what he prescribes, what kind of relaxation techniques he might want Mary to try. It's never even quite clear that what Mary has is a debilitating disease that wreaks havoc on her life. We never seen migraine rear its ugly head except for in the form of sunglasses or a pinch on the bridge of the nose - but what there are copious amounts of are the stressors in Mary's life. There's no prodrome, no aura, no postdrome, no days spent in bed, no vomiting or soirees with the bathroom, and one gets the sense that Mary honestly doesn't have that much of a problem even though her pain is frequent enough to cause her to lose her job, and she tells one woman in her office that "perfume triggers me." There's a general disagreement in the migraine community about what the exact role of stress is on migraine, but we know it contributes to some degree...but it is not the end-all be all of contributing factors, and more than anything, it shows migraineurs as overly emotional individuals. If a migraineur becomes overly emotional, it's because their pain is terrible and never-ending - not because they were that way in the first place.
The major problem with this movie is that it was an excellent opportunity to showcase what a migraineur goes through - the nausea, vomiting, over-sensitivity to other triggers and environments, but instead, it focuses on the emotional stressors in Mary's life and glosses over everything else. As a migraineur, frankly, this movie offended me. It had so much potential, but it was wasted on focusing on the problems Mary has in her life, which, granted, could be contributing to her migraine frequency but doesn't really bother to explain migraine in any other way. The approach is a devastating insult to people who deal with this disease - everyone in life has any number of emotional stressors in their lives, and many of them never have a migraine. This movie was a missed opportunity to explain migraine and the impact it makes in the sufferer's life, their families' lives, and how it ripples out and affects everything else too. The biggest offense here is that the movie was written, produced, and directed by a headache specialist who should know better.
I honestly can't recommend this movie for any migraineur - and I am just being honest in my review, as terrible of a review as I may have just given.
In the end, Mary throws away all her pills because "they don't work." and that's it. End and roll credits. I mean, seriously, what?
Wednesday, November 30, 2011
Personal Migraine Toolbox
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.
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.
Thursday, September 8, 2011
What Migraine Is, for Those Not Paying Attention
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.
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.
Tuesday, September 6, 2011
National Suicide Prevention Week and Chronic Illnesses
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.
Tuesday, August 30, 2011
Away! And some Botox, too.
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.
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.
Tuesday, July 19, 2011
Two Blogs You Should be Reading...
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.
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