What It's Like ...

[hiddenmuse]

As you may (or may not) know, I have epilepsy. Because of the unpredictable nature of my seizures, I prefer to not drive. Because of the fact that I have not been seizure-free for more than 6 months, Missouri state law prohibits me from driving. That's okay, I'd rather not black out and risk causing a huge accident.

Why do I bring this all up? Because, I had a seizure this evening. It's been several months, too. :(

Thankfully my seizures aren't of the "throw yourself on the ground flailing" variety that makes for good melodrama on prime time. Instead, they affect the part of my brain that controls speech ... and I just space out, unable to speak, biting my tongue or the inside of my cheek.

You know how you end up with a word on the tip of your tongue - but you can't think of what it is? That's *exactly* how I feel mid-seizure. Except, I'm not struggling with "impossible words" so much as very basic words. Throw in the voices and deja-vu from hallucinations ... and we're talking fun for everyone. ;)

Afterwards, I end up with nasty headaches, feeling physically drained, sometimes sleeping for an hour or two afterwards. Even though I've had them since I was 11, they still scare the hell out of me when they occur. I look around trying to get my bearings, thinking that I can somehow will them away, that if I focus, it won't happen. That's wishful thinking, but it gets me through the times that it scares the hell out of me.

You know, while many people say that they don't believe in higher powers or anything like that, I do. I say that because I *know* that someone is watching out for me when my seizures happen. Especially when they happen in public, like tonight's. I was just barely coming out of that haze when the bus pulled up. There's no way I would've noticed that unless I was somehow able to become lucid enough to pay attention for a minute.

And with my epilepsy, I can say that I've accomplished a lot. When I was first diagnosed, the information available had moved away from the idea of locking up epileptics in mental institutions (the padded cells would protect us from hurting ourselves when we seize, y'see), but still talked about epileptics as though we needed to be cosetted.

For years, I heard (and read) that epileptics shouldn't/can't drive. No baths without someone else around - you could have a seizure and drown in the bathtub. No gas stoves - what happens if you have a seizure while cooking? You shouldn't live alone - what happens if you have a seizure and hurt yourself?

I took Driver's Ed, when I was seizure-free, only to end up not driving (I think 1/2 of it was my dad scaring me shitless the one time he let me drive at 14 years). I take showers out of personal preference - not because I "have to". Gas stove? Both places I've lived in have had them. I also have a microwave, too. And I've had seizures at home, at work, on the bus/train, anywhere - probably more places than I've had sex. :-x

Now, if you'll excuse me, even though I did get my hair cut tonight, I really should lie down and take a nap. Or just sleep the entire night.

Comments

[msboop.livejournal.com]

Wow! That's gotta be a drag sometimes.

Laugh if you will... but, I have a similar problem, but no doctor has been able to tell me what it is. They make huge assumptions and all... but, nothing concrete.

I call them, for lack of a medical term, spontaneous orgasms. Imagine sitting at the bus stop, thinking of how you need to balance your checkbook, and the guy at work pissed you off, and the kids want pizza... and all of the sudden...

oi

[yokie.livejournal.com]

Wow. How were you diagnosed? I ask because I get that spaced-out deja-vu feeling once in a while but never thought a whole lot of it until I read what your entry.

Hope you're doing well and that your hair looks smashing! :)

[hiddenmuse.livejournal.com]

I was first diagnosed at 11 years old - my mom had come to my room to wake me up for school, and I was mid-seizure, so I spent a few days in the hospital while they ran tests trying to find out what was wrong. They didn't suspect epilepsy until my 2nd seizure, about a month later.

I was thought to be seizure-free for several years, but that may not have been the case. Looking back, I know that I was having seizures before being re-diagnosed at 19.

And thank you - my hair did look quite smashing. Then I woke up from my sleep with spiky hair ... hehe.

[analyzer.livejournal.com]

Amazing...what a thing to live with - but you seem very on top of your situation and not allowing it to interfere with your normal life (aside from the driving thing), which is totally cool.

Are you on any kind of anti-seizure meds?

[hiddenmuse.livejournal.com]

Thank you.

I'm on Tegretol, but since mine seemed to be caused by hormonal fluctuations, I can't do anything about my periods. (I've asked about being put on the pill to see if it could help - but no.)

[sandybright.livejournal.com]

That's what my fiance is on...unfortunately they don't know what the hell causes the grand mal seizures. Luckily he's only had two, and it was something like 4 years between them. They originally had him on some other med but since it was a steroid it made him pack on about 50 extra pounds. After the second seizure, they found that the meds weren't working on him anymore so they put him on the tegretol or whatever its called and it seems to agree with him better.

Sandy
:p

[analyzer.livejournal.com]

What a drag - I am sure you have looked into hormone therapies and stuff...?

[sigmaration.livejournal.com]

>>probably more places than I've had sex. :-x<<

Hee.. was that a challenge? ;)

Thank you for describing how it feels so well. It sounds so scary, and I know that you can only begin to describe the fear you must feel. It scares me to think about you sitting in that bus stop having a seizure.

Bizarre, because after you left the office and I was out running errands, I had this strong feeling something was wrong with you. By the time I had a chance to call you, I checked your journal real fast first to see if you had posted something about what happened tonight.. I don't know what made me do that, but just a big feeling I needed to. Glad I did or I would have interrupted your much needed sleep. I am just sorry that my feeling was correct.

I'll be around tomorrow (Saturday) in the morning/early afternoon. I know you have stuff going on tomorrow too, but just ping me if you get a chance and I'll ring you. YAY for unlimited weekend minutes!

I love you sweetheart.

[therealsugshady.livejournal.com]

Especially when they happen in public

*hugs* I'm glad you're OK, sweets!!

[hiddenmuse.livejournal.com]

Thank you. *hugs*

[sandybright.livejournal.com]

I can't imagine what it would be like living with something like this....All I can offer you is *hugs* :(



Sandy