Anyone here have Epilepsy?

Discussion in 'Random Thoughts' started by mephist00, Jan 16, 2009.

  1. mephist00

    mephist00 Member

    Im wondering if anyone here has epilepsy..?
    i have it and it fucking sucks.. I had a seizure last night when i was sleeping, my body is just killing me now.. fuckin sucks..

    i wanna meet or well talk too someone else who has it, ive never met anyone else who has epilepsy.. i also wanna know about the medication people take to control it..

    i take Dilantin to help control my seizures, but i still have seizures, so im gonna try to get a different med next time i see my doc..
  2. daisymae

    daisymae I'm a Rhinestone Cowboy

    Dave_Techie has it. (since he posts about it I hope he doesn't mind me saying so)
    Sorry about your epilepsy. It must be frustrating to take meds, expecting them to work and they don't.

    My son had a febrile convulsion when he was 3 and it was fucking scary. It put me in labor with his brother because I was so worked up...
  3. NightRose

    NightRose idiosynractic rose

    I've been having siezures before I could walk. And yeah Dave-Techie has epilepsy too. I woke up having one once, I guess I never really passed out and only half my body was paralysed so that was pretty hairy scary.
  4. mephist00

    mephist00 Member

    yea, it is scary.. im not one to get scared of things, but its really just horrible so thanks for your sympathy daisy, scary as fuck waking up in the hospital..

    and i dont mind taking the pills, because they do help control it to some extent.. the thing that bothers me is i never know when im gonna have a seizure, i could be doing anything, and bam, seizing up.. really sucks.. but i guess most people dont know when they are going to have one..

    nightrose, yea supposedly ive had seizures since i was an infant too.. my early teen years they were bad and frequent, and now i rarely get them, like 1-4 times a year..

    my girlfriend was here last night when i had this seizure.. she said i was trying to get up and walk, smashed my face into the dresser :|

    ahh damn its so frusterating, i broke my cellphone too :( guess im just glad i am still alive today
  5. squawkers7

    squawkers7 radical rebel

    My mom & her younger brother & sister have it. My mom used to take dilatin, depokote and phenabarbital...not sure what meds she is on now.
  6. mamaKCita

    mamaKCita fucking stupid.

    my friend had one and only one grand mal seizure out of the blue just a few years ago. she's been on loads of medicines ever since.
  7. hiro

    hiro pursue it

    I dated a guy for three years who had epilepsy.

    He had a good half his brain removed and his amygdala removed as well. He took tegretol after and before the surgery.

    I never saw him have a seizure but I did see the after effects of the surgery. He had severe emotional issues and anxiety.
  8. nakedtreehugger

    nakedtreehugger craaaaaazy

    jesus. that's some serious removal of stuff from the brain, hiro. that would be enough to fuck anyone up. :(
  9. YankNBurn

    YankNBurn Owner

    and on a wrong note, could ya imagine the sex?
  10. mephist00

    mephist00 Member

    lol, i see the humor in that yank :) but still not funny! :p :D

    well, thanks for the comments guys, yesterday i had a bad seizure i guess.. seeing people talk about it kinda reminds me im not alone on this subject, and im probably better off then some people are.. god damn idk why but that seizure scared the shit out of me :p im still afraid im gonna wake up with brain damage, or not wake up at all :| guess i better stop thinking
  11. YankNBurn

    YankNBurn Owner

    There was tales that the strobes on police cars and such would send people off into siezures, never knew if that was valid or not?
  12. clever-name

    clever-name Member

    I technically do, but not bad at all. I think you do if you have had more than two idiopathic (no known cause) seizures in your life.

    When I was in HS, I had at least 2. First time was on the phone with my GF who was across town. My dad and brother were downstairs, but didnt' know until she came rushing over in her car, knowing that something was wrong. The found me, very disoriented, wrapped in the phone cord. I acted a little irrational (which I don't remember). I guess they were asking me what I was on, and I was a little mad about that. I came to with a cooler I used to take to work, and realized I didn't know what the hell I was doing. Apparently I was throwing soda into it saying I was leaving for work because I was mad at them. I remember looking at an analog clock on the wall, thinking I was at work, and then suddenly realizing I was at my house.

    I think I had one other on the phone with a friend. I felt an aura with that and remember trying to stand up because I tried to fight it (futile) and waking up asleep in my bed hours later. My friend said he heard something and just hung up. (I always thought he should have called back and told someone.)

    I was on tegretol for about 5 years, and then weened off hoping I was done with it. After being seizure free for 5 more years (10 years since my first episodes) I was sitting watching TV with my wife and had one. My leg went stiff and I didn't respond. She was scared and angry and kept yelling at me to "stop it" which I never heard.

    I've been on tegretol since then. Now they have a time release capsule, so there aren't spikes in the level like before they had those. I've never noticed anything from the tegretol and my liver function is always fine, so I guess I'll keep taking it.

    I haven't had a seizure for over 7 years now, but continue with it based on my Dr's advice. She's a neurologist from Yale, who seems pretty good. I think her ex husband may have pioneered the technique or removing or splitting the brain (somehow preventing the two sides from talking) for extreme cases.

    It always looms over my head. I always wonder if the tegretol even does anything at all or if I will just have one every 10-15 years or so and the tegretol isn't really helping. I do drive etc, based on Drs advice and the law in my state. But, it is scary.

    I feel like (although it's not true) that any other illness you could somehow overcome. Overcome the pain, or force your body to do something if you really had to. But, with seizures, there's no way to stop it or control it at all.

    I had a pain in my abdomen before I had the most recent (7 years ago), so every time I get a stomach ache, I think...oh shit....

    I know I'm so lucky compared to most others out there.

    One other downside I've noticed is that it puts you in a high risk group for life insurance. I have to say I have epilepsy, even though I don't think it will kill me since it's so's just a check box.

    One good thing (I think I read on this forum) is that the reason they started giving electric shock therapy to people is because they notices statistically people with epilepsy are much less likely to have mental problems, so they tried to simulate it with electricity.

    Neil Young, and a lot of really smart and creative people have epilepsy, so you aren't alone.
  13. seizedbyanger

    seizedbyanger Banned

    one of my best friends had epilepsy and they removed the front left of her brain. she doesn't seem any different but she doesn't let it get her down, either.

    she laughs about it though, we all make fun of her jokingly cuz they sewed her back up crooked and now her ears are lop-sided and she thinks its the funniest thing ever :)
  14. Dave_techie

    Dave_techie I call Sheniangans


    I'm supposed to be on zonegran, it works, but without insurance, retarded expensive, so I've not been med compliant. I'm actually looking into dilantin (phenytoin) sister is on phenytoin, I've lost count of how many tonic clonic seizures I have had, fuckin' forget about the small ones (a-tonic, petit mal, partial complex)

    my neuro, and the epileptologist he reffered me to describe it as "weird epilepsy"

    which makes me laugh a little

    I usually have a 30 minute aura before my big ones, the little ones, well, my brain has become robust enough to ignore most of those.

    I had a tonic clonic on halloween, and somewhere here there is a partial transcript of a convo I had post ictal.
  15. mephist00

    mephist00 Member

    i've heard it too actually.. they definitely bother me, any strobe light related thing, flashing on TV, video games, i usually just close my eyes until the hard flashing is over, but ive never had a seizure set off by one, and ive only had 1, mm maybe 2 seizures during a video game.

    i feel ya man, seizures are quite the burden.. i wish i could Overcome seizures too.. although epilepsy is pretty bad, im sure there are people that have more problems then epilepsy, but after knowing, i wouldnt wish a seizure on anyone..
    But im glad for u that your seizures are under control, i really hope someday i wont have to worry about it.. and yea i know im not alone, seems like it sometimes, out of all the people i have met, im almost 100% that no one i know has any seizure disorder, really does make me feel better talkin with some people who have seizures though, feels good actually.. and really, Neil Young ... epilepsy? didnt know that!

    seizedbyanger; does that girl still get any ttype of seizure now that she has had brain surgery?

    Dave_techie; yea those are the kind i have, and yep, i've lost count too, grand-mal or i guess now they call it tonic clonic. Also, i dont get any aura or any type of warning. One girl i happened to meet, i dont really know her, but she told me she smells strawberries before she has a seizure.. i guess i just stiffen up for a minute, then go into a 2-3 minute seizure.

    phenytoin, thats the generic for dilantin right? idk why, my doctor told me i have to take real dilantin, the generic phenytoin was not preventing seizures in me at all.. although i guess that is one of the wierd things about seizures, a medicine that works for one person, may not work for someone else in the case of epilepsy

    well i feel alot better talkin with some people who have had seizures, so, really thank you all for your comments/support!.. cant thank you enough.. its a pretty personal and scary experience.. although i wish none of us had seizures, i guess its something some people have to live with, and im one of em..

    mark my words, if i ever become rich, i will donate a crapload of money to an epilepsy foundation, on research of medication/treatments for seizures. because this disorder sucks, its such a burden to have to worry about seizures, i dont wish this pain on anyone..
  16. jerry420

    jerry420 Doctor of everything Lifetime Supporter

    a friend of mine has mild ones...yesterday i watched a 37 year old man go grand mal 4 feet in front of me at was insane...he would try to talk and he just couldnt form words...the bottom window on the inside back door in the shop was replaced last year with an aluminum composite piece...good thing too cause this guy would have broken it with the kicking...ive never seen anything like it...two ski patrol guys had to hold him down...and by two ski patrolers, i mean two HUGE fuckers...

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