Magical Truthsaying Bastard Shadesong (shadesong) wrote,
Magical Truthsaying Bastard Shadesong

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The Epilepsy Post

For the me-FAQ.

I have temporal lobe epilepsy (diagnosed in October 2003). This means that I don't have generalized seizures, which are the fall-down-jerk-around ones; I have what's called complex partial seizures. The problem appears to stem from my left hippocampus, which is scarred and atrophied. I started presenting the major symptoms in late August/early September, and was easily diagnosed from my MRI. My seizures are absolutely textbook... this is one case where I'm glad to be a conformist!

Essentially: I get misfires. Electrical storms in my left temporal lobe. To the observer, this just looks like me spacing out for an unusual amount of time - just a few minutes. To me... well. I can feel the connections in my brain go spla. I know that my brain isn't working, I feel my inability to think, and it scares the bejesus out of me. When I emerge from the seizure, I'm overcome with exhaustion - because although I don't jerk noticeably, all of my muscles were twitching just a tiny little bit, all at once, just not noticably.

I think I'm doing a decent job of describing this. I hope so.

Anyway! Exhaustion and disorientation.

What can you do for me when I'm having one? Just wait patiently. If I'm moving, keep me away from anything harmful; during a seizure, I'm unable to feel pain, so I could easily, say, set my hand on a hot stove burner and not register that it was there for a few minutes. Very bad. Otherwise... you don't need to call a doctor, you definitely don't need an ambulance, but you should call yendi.

I've been seizure-free since December very late June 2004.

I'm on Lamictal (generic name: lamotrigine).

"The most common side effects with LAMICTAL include dizziness, headache, blurred or double vision, lack of coordination, sleepiness, nausea, vomiting, insomnia, and rash."

I have the bolded ones. When I started out, they were horrible - there were some days when I was too spindizzy to walk or even stand! The nausea was constant, and it got worse when I ate - this has led to me unintentionally losing 35 pounds. I'm stabilizing... my nausea only occurs when I eat what my body deems "too much", these days. And I only occasionally have balance issues. The side effect that bothered me most was a sort of aphasia... I lost my words. I was intensely frustrated, crying at times, because they were easy words and I just couldn't get to them.... I also have variable memory lapses, whether due to the medication or to the damage to my temporal lobe and hippocampus. These days it's mostly just forgetting that I'd said something and re-saying it.

But all of the side effects are worth it, because the seizures are the scariest fucking thing that've ever happened to me.

I can't drive. Legally, I'm allowed to drive in another three months. My medication, however, takes my focus away... I can get to work and back. That's a ten-minute trip. But 15 minutes is out of my range; I find it difficult to maintain the necessary focus. This may be permanent. We'll see if they come up with any new medications...

The best book I've read on the subject so far is Complex Partial Seizures, by Mitzi Waltz. I have a bunch of epilepsy books on my wishlist, but most of them are expensive! I've actually pondered auditing a neurology course here at the university - I'm just relentlessly curious about why this occurs and how it affects my body and mind. I analyze everything to death. :)

More info can be found at the Epilepsy Foundation's homepage. And I have a research journal at sickhippo that I never update, but once I find the books I lent yendi...

Yeah. This is a big part of my life now. Considering that I have to actively think about it at least twice a day (when I'm taking my medication), I don't rant about it often. There are just times where, like I said, I get angry at my body for not working. I'm doing okay on a day-to-day basis.

I think I covered everything. Any questions?

Oh, and per seattlejo's excellent suggestion - you can support epilepsy research here. The Epilepsy Foundation says "83% of all donations go directly to research and services for people with epilepsy." To help out locally, go here to find a local affiliate and find out about their fundraisers or volunteer needs.
Tags: epilepsy
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