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
blogs · book reviews · books · exercise · fat · food · headaches · http://pastaqueen.com/blog/ · Jennette Fulda · medication · pain · skinny · topamax · weight · writing

Read This Book!

I’ve spent the last two weeks obsessed with Jennette Fulda. I began by reading an excerpt of her newest book, Chocolate and Vicodin:My Quest For Relief from the Headache that Wouldn’t Go Away, and then searched out her first book, Half-Assed: A Weight-Loss Memoir at the library. This led me to the blog she’s known for, http://pastaqueen.com/blog/. It’s been difficult to tear myself away!

Jennette, at her heaviest, weighed nearly 400 pounds, and by changing her eating habits & exercise, she lost half her body weight! I loved reading her stories of this change, partially because she’s honest, and not one bit self-righteous, but mostly because she’s just plain funny. I laughed out loud (lol) when she says “I felt confident enough to sign up for a 5K race. The former fat-girl bylaws dictate that you must run a 5K or you will be forced to gain back all the weight.” Seems that every formerly fat-girl I know is now running 5k’s and I think perhaps that’s why I’m still fat. I don’t want to run.

Jennette’s second book, Chocolate and Vicodin is in stores now. It’s the story of the headache that wouldn’t go away. In February 2008, she got a headache, and has been searching for a cure ever since. Chronic pain is nothing to laugh at, yet she manages to make it funny; the woman has a gift.

Now, I haven’t had a chance to read the book yet; it was just released last month, and I am too broke to purchase it. (It is on hold at the library, and my birthday is coming up, so..) I have read a couple of excerpts and the blog, and I must say, I am feeling very in sync with Jennette.

In the search of a cure for never-ending headache pain, she’s given a number of medications, and I have personal knowledge of several of these. The section of her blog that put my feelings into words is quoted below.
“To complicate things further, although the Topamax was making it easier to eat less, it was also making me stupid. It’s nicknamed “Stupamax” and “Dopamax.” It made it harder to speak right, like someone had placed the English language on the top shelf where it was just out of my reach. I could still see it, but I had to stand on my tippy toes to grab words, and even then I was just knocking them over instead of grabbing them firmly. I just felt…dumb. I found myself unable to focus as well. It put a damper on my mood. The crazy switch was turned off, but the stupid switch was turned on.”

I took Topamax for nearly 4 years, as an anti-seizure medication, and hoo-boy, do I remember that feeling. When I couldn’t find the words I wanted I used to say my brain was skipping, like a scratched record. My neurologist would test me to see how my verbal skills were, and eventually, as they deteriorated, and the Topamax wasn’t controlling the seizures, we switched meds. Right now I’m on a very low dose of it again, to help with chronic headaches (ugh), and I’m skipping every so often. But it is helping me lose weight.

Jennette Fulda writes in a real & humorous manner about things that are happening in her life. It’s feels like talking to a friend. I think this is why I’ve been unable to tear myself away from her blog archives for the last two weeks–I was getting to know my new friend! She’s smart, snarky, strong and talented. Read her books! I promise you won’t be disappointed.