Two Weeks Out

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!

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

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?

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

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

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?

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?