Alice in Wonderland Syndrome · crazy · Crystal Light · epilepsy · fat · food · headaches · Internet · medication · migraine · neurology · pain · seizures · stress · triggers

There’s A Word for That?

Migraineur:

mi·grain·eur

mēgrəˈnər,ˌmīgrā-/
noun
 someone who suffers from migraine headaches.
Earlier this week, I was doing some research online, trying to see if there was a connection between the two glasses of pseudo-Crystal Light I’d been having now that the weather is warming up and the massive migraines I’d been having, when I learned some nifty things. Such as the word migraineur. Makes sense that there’s a word for people like me, but it had never occurred to me.
Reading about triggers was rather enlightening as well. I wasn’t all that surprised to learn that artificial sweeteners are a big migraine trigger, since they cause all sorts of problems. I try to avoid them, preferring natural sugar, really I do. But for some reason, every summer, I go through this diet drink frenzy where I consume Crystal Light, or the fake store brand equivalent, in all it’s many flavors. No more of that for me. I’d rather be fat than in pain. Sugar is a trigger for many people, but I have to consume a huge amount before it gives me a headache; same with caffeine. Alcohol, on the other hand, give me pain within an hour or two of my first cocktail. No big deal, since I’ve never been a big drinker. Some of the other common food triggers are chocolate, cheese (hard or fermented), processed meats, and gluten. To the best of my knowledge, none of these are triggers for me. Good thing, too, because I don’t want to give up chocolate. Life is hard enough. Other triggers include weather changes, bright lights or loud noises, perfumes, lack of sleep, stress, missing meals, dehydration, hormonal changes, and crying. Yep, one reason I avoid the cosmetics counter at department stores. Those perfume samples are killers. Same as the laundry detergent aisle in the grocery store. First I sneeze, then I get a headache. No fun.
Migraine Triggers infographic
Here’s what really came as a surprise to me, however. In an article called ‘What’s Your Strangest Migraine Symptom?’ I learned that several things that have been happening to me for years are likely migraine-related. And here, I thought I was just crazy. Or had a brain tumor.
One of these symptoms, Alice in Wonderland Syndrome, is a disorder that causes a person to believe that body parts (and in some cases their environment), are changing shape or size. For me, it usually means that I feel as if one hand is growing larger and larger, as if it’s a huge clown glove, filled with air. It never lasted very long, but felt as if it did. Once, when a migraine was so bad I had to go to the ER for treatment, this happened after they gave me the fun shot; that time, I felt as if my ears were getting bigger and bigger.
The first time I remember this happening I was eleven-years-old. I had been reading in the afternoon during summer break, and suddenly, my right thumb began to grow. It didn’t last long, or get very big, and I don’t remember if a headache followed it, but I do remember being totally freaked out. Until recently, I never told anyone about it.
When I was in junior high, I read Stephen King’s ‘The Dead Zone’ for the first time, and one thing from that book has stuck with me ever since. The neurologist asks Johnny if he ever smells anything unusual, like rotting oranges, or feces, when there is nothing there; apparently this  a sign of a brain tumor. Well, it turns out these types of sensory hallucinations are also a migraine symptom, one I’ve had often. I was pretty sure I didn’t have a brain tumor, because I’ve had my fair share of MRI’s & CT scans, thanks to the epilepsy, but thanks to Mr. King, I was always scared. Now, I don’t need to.
I do wish that one of the neurologists I’ve seen over the years had pointed some of this stuff out. I’m especially cheesed that the migraine specialist I’ve been seeing for the last year never mentioned any of this. I appreciate that there are all these online communities, but shouldn’t a doctor have said something?!
I’m sure there’s a word for how I feel.
migraine-art