Migraine in the Membrane

My dad died 24 years ago yesterday of a stroke at 63. The very first migraine I ever had came the day before that. I was 13, I felt sick, and I left school around lunchtime. It was a very windy day, and I remember damp, cold wind blowing into my ears all the way home. I went straight to bed--by the afternoon, my head was full of searing pain, and, having taken aspirin and not knowing what else to do, I tried to just go to sleep. Eventually I did fall asleep. Hours later I was vaguely aware of muffled noises downstairs, lights, and a siren. I didn't fully awake until an hour or so later, upon which I found out from my mom that my dad had been taken to the hospital by ambulance after he called my mom's name and collapsed. I still didn't feel well, and I went into the bathroom and threw up in the bathtub.

Seventeen or so years later, I started having very brief but intense pains on one side of my head. Like I said, they were brief, but I hadn't felt anything that intense in my brain since my dad died. Cautious, I had an MRI, which turned out normal, and I was prescribed Imitrex, which I took on days when I felt the pain. It all went away within a month or so.

One day maybe that year or a year later, I was sitting on the couch in our house and didn't feel quite right. I felt spacey and slightly headache-y. Turning off the TV, I picked up either a book or magazine, but when I tried to read it, I felt confused. I decided to read a line out loud to better concentrate. When I spoke, I knew what words were supposed to be coming out of my mouth. But what came out wasn't those words at all.

I was having exactly the same experience as reporter Serene Branson when she spoke gibberish on TV outside the Grammys last month. I heard myself saying things, and I knew that what I was saying wasn't what I was trying to say. I think I tried again and heard the wrong words/sounds again. This was not right. This was freaky. I put whatever it was I was reading down and lay down on the couch, closed my eyes, and waited to feel better. What was earlier only the hint of a headache came on much stronger, and my stomach was queasy. Within fifteen minutes or so, however, I was fine. I sat up, grabbed the book/magazine, and read it aloud again. This time, everything came out fine.

I should have called 911 as soon as my words didn't match what my brain tried to tell my mouth to say. I should have at least called my husband, who wasn't home. But I let it pass. I opened the windows for awhile and changed the batteries in the carbon monoxide detector on the wall. For years I thought it must have been a mild case of carbon monoxide poisoning and thanked God it had apparently peaked at that moment and not at night while we slept. I felt silly and embarrassed for not having called a doctor when I wasn't speaking right--for heaven's sake, I could have been having a stroke. But since it passed so quickly and I felt fine afterward, I figured it must have been some sort of air issue and left it at that.

Last year, I was working a filing job, and I started getting intense neck pain when I sat at my desk and sorted papers. I adjusted my seat height and kept my head in a different position and tried to avoid developing that pain as best I could. Sometimes it would turn into a full headache and I would feel somewhat nauseated. Several months later, I was entering data on the computer at work, and when I tried to reach the number keys above the letter ones, my fingers wouldn't go there. They would go to the letter keys instead. This wasn't a typo here or there or finger malfunction. My brain would say, "Type an '8,'" and I'd type an "i" instead, even when I concentrated on making the "8" happen. I also wasn't feeling right that morning--my head felt funny and I felt mildly sick to my stomach. Hm.

Time for a trip to the emergency room and another MRI. Thankfully, it was normal. I had been sure I was having a stroke. In fact, it was a migraine.

I told them about my reading/speaking misfire years back and they said that was a migraine, too ("complicated migraine"). That had never occurred to me. Apparently people can even have paralysis on one side of the body during certain kinds of migraine.

The next day, I felt funny again, and I wound up with bright spots, zig-zags, and floaters in my vision as I tried to work. Eventually it passed. Again, I had a migraine--this time, migraine with aura.

The next day, I had symptoms again. Not mental or visual, but nausea and head and neck pain. Again, eventually it went away. I hadn't felt completely normal throughout those 2 1/2 days. Symptoms came and went and changed and appeared and finally really left halfway through the third day.

This happened again about a month later. I have Crohn's disease, and I get Remicade infusions monthly as my main treatment. The migraines were starting the day after I got my infusion. Oh joy. Was the Remicade causing it? I had fought hard enough to get back on the Remicade after a doctor took me off of it for a different reason the year before (off the Remicade, I got sicker from Crohn's than I had been in years). I wasn't about to tell my current doc and be taken off of it faster than you can say "Pre-meds." I decided that the pre-meds I had to take just before my Remicade infusions were the culprit because I didn't like them. Then the next month I didn't get a migraine, so I didn't think about it anymore.

Fast-forward several months: three days ago I had my monthly Remicade, and two days ago I got a migraine. Sigh. And I'm not on pre-meds anymore, incidentally, so I can't blame them. Yesterday I got a migraine again, and I'm feeling the pre-migraine feeling right now.

It's the strangest feeling having a migraine. They are not all alike, so I can't describe everyone's experience, but the ones I've had this week and had last year have been similar to each other. The first feelings are a somewhat odd, spacey feeling--my first inclination is to say I feel "light-headed," but it's not that. I also feel cold, and I feel slightly sick to my stomach. An hour or two later, a pain begins in the back of my neck and my ears eventually start to ring. By an hour or two after that, my guts are starting to churn a little. I start to feel bloated, and I'm burping and farting--pretty. Meanwhile, my head feels weird. It's not the searing pain of my first migraine when I was 13--it's a dull pain all over. A strange pain--it almost feels burny inside. I feel it behind my eyes and nose and eventually throughout my skull. By this time I've become sensitive to light and sound. At the height of it, I feel like my brain is too big for my skull and it's trying to ooze out, my internal organs are liquefying, and the back of my skull, where it meets my neck, is on fire. It's not pleasant. It could feel much worse--it's painful but not intolerable (though when it gets to this point, I'm lying in a dark, quiet room and doing nothing else), and I know that a lot of people suffer horrendous pain with migraines. But it's rather scary. Because it means that something is not right with your brain.

I read up on migraines yesterday (every time I've done so in the past, it seems like I've conveniently forgotten everything I've learned), and, as I had feared but told myself not to think about during my migraine two nights ago, a migraine can apparently become a stroke or put you in a coma. GREAT. People with migraines are also 2.2 times more likely than the non-migraine population to have a stroke. Women on birth control pills are also apparently 8 times as likely as the normal population to have a stroke. I was on the pill until a few months ago (my husband and I are trying to have a baby). I don't think I'm going to go back. Migraines and stroke are also genetic. Migraines also might be a risk factor for MS, and one of my brothers has MS.

Apparently I'm supposed to avoid triggers. Thankfully, I recognized several in myself, particularly over the past few days:

- disrupted sleep pattern--not enough or too much sleep (in my case, I've been getting too many hours of sleep the past two weeks, and I've had all-over-the-place bedtimes and get-up times).

- dehydration. I have not been drinking enough water or other fluids the past several days. Today I've got a timer going off every hour to remind me to keep drinking and refilling my glass, and it's been a real education for me. I let a full glass sit a long time and apparently tell myself I've been drinking when I haven't. I don't know what my problem is with this. Sometimes I wonder if the part of your brain that tells you you're thirsty doesn't work on me (not joking).

- Remicade. I looked up migraine as a side effect of Remicade and from anecdotal evidence online, apparently this is fairly common; same thing with Humira injections (Remicade and Humira are related drugs). Probably because I don't want to be taken off of Remicade, I'm choosing to believe that the Remicade infusion is one of several factors that together have led to this string of migraines this week, not the sole cause. The fact that I went through several months without a migraine nor any Remicade side effects at all seems to back this up.

- stress. I don't by and large buy into stress as the root cause of most physical ailments, but I do believe it can be a contributing factor along with other factors. The past two weeks I've been traveling a lot, stressed out, and emotionally exhausted more than once, related to an illness in the family. My coping mechanisms have never been the same since I went through an extremely stressful period nine years ago related to my own health and hospital stays. I'm prone to panic attacks following intense circumstances--kind of an aftershock effect. It's possible that's playing a role right now. Over the summer when the migraines started, it wasn't long after my stepfather passed away.

So I'm going to try hard to avoid the convergence of these triggers. I'm scared to death of having a stroke and I don't want to die as young as my father or, God forbid, younger. Thankfully I've never smoked, I'm not on the pill anymore, and my blood pressure has always been low. (My dad had high blood pressure and smoked all his life.) Because I have Crohn's disease, my blood is checked every few months, so that's a nice back-up, knowing that weird health issues might be seen in my blood before they are too far gone to fix. And according to this assessment, I only have a 1% chance of stroke in the next ten years.

Hopefully I can avoid burping-farting-burningbrain next month. If you run into me, please tell me to drink a damn glass of water.

KHW, 1923-1987, rest in peace.