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Epilepsy (no Ian Curtis)

soulmarcosasoulmarcosa 4,296 Posts
edited September 2008 in Strut Central
Some of you may recall my homegirl who had a serious head injury in July of last year. She recovered tremendously and outside of a few bad headaches, has had very few long-term effects since then. b,121b,121Until now. b,121b,121She had two seizures yesterday (first time she's ever had those) and has now been preliminarily diagnosed as being epileptic. Unfortunately she's also uninsured.b,121b,121So are there any strutters out there living with epilepsy or a loved one with it? I'm curious to know your experiences regarding health insurance, medication, loss of privileges such as driving, etc. I've already looked at a few online epilepsy resources but I'm interested in a more personal view from you guys.b,121b,121Thanks anyone who can contribute to this topic.

  Comments

  • The_NonThe_Non 5,691 Posts
    A good work acquaintance of mine had epilepsy and I didn't even know it for a long time. Eventually, I found out because he was looking for a way to synthesize the drugs he needed for his epilepsy thru some method of home chemistry. I conferred with some friends to lead him to the fact that he should not do this a) because it would be expensive b) it would be difficult and c) he could poison himself or burn himself up. His insurance was running out, so he desperately sought and acquired a job that gave full time health insurance benefits. Without drug therapy, epilepsy can be very brutal, so it is imperative she find a way to get some help quickly, be it by job, through the state, or some form of aid agency. My friend always didn't want to drive when we went anyplace, and I didn't understand it until I found out he had epilepsy. b,121More than anything else, the quicker she can get it under control via drug therapy, the better her life will be, because quality of life dealing with unmedicated epilepsy is not good. Besides the health and safety risks, sufferers often retreat from society into themselves as to never be found out or "make a scene."b,121Dogs can often sense/indicate when a beloved owner is going to have a seizure, so there is that as well. Like a canary in a coalmine/early warning system. b,121I wish you and your friend good luck, and find help as soon as possible. b,121Peaceb,121T.N.
  • pj4533pj4533 481 Posts
    yeah man, i have epilepsy. It is a mild case, completely controlled by medication. I was diagnosed my freshman year of highschool, just out of the blue I had a seizure, no prior injury or anything.b,121b,121They put me on Depakote (that is the brand name for Valproic Acid). As a drug it is pretty intense, I guess it is also used to control several conditions such as bipolar. It can be rough on the liver, so I have to get regular blood tests. I read alot about it, and considered switching medications to one that had less long term side effects, but ended up staying on Depakote for several reasons. 1) the newer medications have less long term side effects, but have been around for much less time, so noone really knows the long term effects, because they havn't been tested that long. 2) you can't just "go off" epilepsy medication cause the whole idea is to maintain a level of the medication. you have to slowly take less. This, of course, increases your risk of a seizure. b,121b,121Over the years there have been times when I thought "oh i havn't had a seizure in like 5 years, I am fine", and quit taking my medication. Usually like clockwork after a week or so, I'll have another one. Total I have had 3 since being diagnosed. b,121b,121In my state (MA), the laws are that you can't drive for 60 days after having a seizure (another reason I decided not to switch medications). When I had the last one (roughly 6 years ago) I did drive, but the doctor said if I got in an accident for ANY reason they could press criminal charges. So I only drove to work, never at night for any reason. It was risky...I probably shouldn't have.b,121b,121All in all, epilepsy by itself isn't a big deal when it is controllable by medication. For your friend, I would urge her to do whatever she can to get on the correct medication for her type of epilepsy. I know the insurance is crazy, cause she'll probably need an EEG and possibly an MRI. b,121b,121Hope that helped...lemme know if you have any other questions. I don't mind talking about specifics or anything, it really doesn't bother me. I have lived with it for almost 20 years now! HOLY SHIT, ALMOST 20 YEARS!!!!! I'M OLD!b,121b,121-pj
  • soulmarcosasoulmarcosa 4,296 Posts
    Quote:h,121b,121Hope that helped...lemme know if you have any other questions. I don't mind talking about specifics or anything, it really doesn't bother me. I have lived with it for almost 20 years now! b,121b,121h,121
    b,121b,121Thanks PJ it's good hearing your story. Only three attacks in near 20 years is amazing and inspiring. I may holler at you when she finds out more about her situation and I have something more specific to ask about.
  • pj4533pj4533 481 Posts
    Quote:h,121b,121b,121b,121Thanks PJ it's good hearing your story. Only three attacks in near 20 years is amazing and inspiring. I may holler at you when she finds out more about her situation and I have something more specific to ask about. b,121b,121h,121
    b,121b,121yeah man, no problem.b,121b,121I don't mean to make light of it either....while epilepsy is controllable, it is NO JOKE. If she has grand mal seizures (as I do), that shit is crazy. I completely black out, and (in my case) don't even know its going to happen. One second I am fine, next I wake up in an ambulance. So if that happens while driving....no need to explain. b,121b,121Tell her to get that insurance situation sorted!b,121b,121-pj
  • bobbydeebobbydee 849 Posts
    There was a thread about it where a few people told their stories a few months ago. I'm useless with the search function but perhaps someone better than I can hook it up for you.
  • eliseelise 3,252 Posts
    Hey,b,121b,121i am very sorry to hear of your friend. My good friend Bozak had one a few years ago and it scared the shit outta me.b,121b,121here's the thread he started:b,121http://www.soulstrut.com/ubbthreads/show...rue#Post1136981b,121b,121I do know that what already been mentioned should be taken into account. Insurance is a real bitch, but there has to be ways around it. Like Bozak can now get his Depakote (Valproic Acid) on the $4 list (or at least cheaper than the $150 he WAS paying) so there is some hope in that.b,121b,121b,121Im sure if you want to, he would be more than happy to answer your questions.b,121b,121I wish allll the best to your friend, and to you as well.
  • JimsterJimster Cruffiton.etsy.com 6,954 Posts
    Very good friend of mine is having trouble with this now.b,121b,121He fell down the stairs in his appartment just before Christmas, about 3AM. Fortunately, his neighbours came into the building at 5AM and found him at the bottom of the stairs with blood coming out of his ears.b,121b,121He'd had a few drinks, and he'd had water on the brain when he was a teenager which, at the time, was mis-diagnosed as a 3 day headache (by a doctor keen to tee off, no doubt) which had left his right side partially paralysed so his balance wasn't good on that side anyway. So he fell a little easier than most.b,121b,121They took him to hospital but he couldn't talk properly. They diagnosed him as a drunk which he was trying to explain he wasn't, when he started fitting. They found a blood clot on his brain from the impact (in the same place he'd had the water 20 years ago) and he was in a coma for Christmas and well into Feb. It was a pretty bad Christmas for all concerned.b,121b,121Anyway, he's out of hospital now, but with a big dint in his head (which they are going to plate over when they are sure it's all settled) and his speech is back, but he's struggling to remember certain words - he tells me he has no problem remembering them later, but if he's concentrating on something, his brain makes those words hard to retrieve until he's talking about something completely different.b,121b,121The doctors there tell him he's lucky to be alive, and incredibly lucky that the part of his brain that had the clot was already damaged. However, this doesn't mean his life is a bed of roses. He's been told he can't drive or take a flight for at least a year. Plus, his g/f has walked on him as she can't deal.b,121b,121He's also on so many tablets, he rattles. One of these is an anti-epilepsy drug. He hates taking it because he says it slows his brain down, which he believes is what is interferring with his vocabulary. He's had two slight fits since the accident which is why they are insisting he takes these, but he's sure his condition isn't epilepsy.b,121b,121He's also concious of the dint in his head, which means he won't go out without a cap or a hat on (hair isn't an option) and he's unable to work until his vocabulary is back (because, irony of ironies, he's a doctor himself, so the (stark) reality of his chances of full recovery are laid bare to him).b,121b,121At the moment he is going to cut down on the epilepsy medication and see if he has any more incidents. But of course, he's wary of being alone if this happens.b,121b,121I would say dude is 80% back to normal in terms of brain function and 60% in terms of physical ability, but the biggest frustration for him is the timescales of getting back to anything like his own high standards. For the first time in 20 years of knowning dude, I've seen this brilliant musician, who had almost totally overcame the water-on-the-brain issues to become a doctor after being mis-diagnosed himself, seems to have some sense of self-doubt, at a time when he needs to be fighting hardest.
  • d_wordd_word 666 Posts
    Quote:h,121b,121They put me on Depakote (that is the brand name for Valproic Acid). As a drug it is pretty intense, I guess it is also used to control several conditions such as bipolar. It can be rough on the liver, so I have to get regular blood tests. I read alot about it, and considered switching medications to one that had less long term side effects, but ended up staying on Depakote for several reasons. 1) the newer medications have less long term side effects, but have been around for much less time, so noone really knows the long term effects, because they havn't been tested that long. 2) you can't just "go off" epilepsy medication cause the whole idea is to maintain a level of the medication. you have to slowly take less. This, of course, increases your risk of a seizure. b,121b,121h,121
    b,121b,121b,121If there's anything positive to say, I understand that the medications have improved greatly in the last 20 or 30 years. b,121b,121Talking about Ian Curtis, back then they didn't have better drugs so they loaded people up on barbiturates. It was the best available to control seizures but those kind of drugs can add on and worsen his depression. b,121b,121My sister-in-law has it. She seems to manage it all very well - except I know that she doesn't drive - I think it is her choice. Best of luck in dealing with it.
  • JimBeamJimBeam Seattle. 2,012 Posts
    Quote:h,121b,121b,121She has now been preliminarily diagnosed as being epileptic. Unfortunately she's also uninsured.b,121b,121b,121b,121h,121
    b,121if i remember correctly, she was in the state of california. if so, and the preliminary diagnosis is correct, epilepsy (and most other medical conditions) are covered under the medi-cal program. If she's ever worked in the state, she's paid for it-- it might be worth looking into if she fails to obtain other insurance.b,121b,121http://www.dhcs.ca.gov/services/medi-cal/Pages/default.aspx
  • soulmarcosasoulmarcosa 4,296 Posts
    Thanks everyone for the input thus far. I've talked to her a couple of times since my first post, but unfortunately she was really out of it & woozy from her medication (Keppra) so she wasn't able to tell me much. She had an EEG today and she's supposed to set up an appointment w/ a neurologist next week for an exam. Right now I'm not so worried about her prognosis as her ability to pay for treatment. Luckily she's with her mother and brothers since there's nothing I can do from across the country. Fingers crossed.
  • PlantweedPlantweed 394 Posts
    Between high school and college I worked on the grounds crew of a local hospital. One of the younger guys had epilepsy. We'd had to watch him, cos every few weeks he'd start acting funny, and if we were walking down a hall when he'd have an attack, he'd land face-first on to the floor if we didn't catch him, plus he'd empty his bladder and bowels.
  • bozakbozak 334 Posts
    I hope your friends situation becomes manageable for her.b,121b,121In terms of costs....its going to be real real expensive. I dont know if she has already had all the EKG's, MRI's, CATscans, and all the other stuff that goes hand in hand with being diagnosed but its rediculously expensive. I was lucky to be young and covered by my parents insurance at the time I had my first seizure.b,121b,121Doctors around my way were not so really providing the sort of care we felt I deserved so we ended up finding a specialist that we were comfortable with in ST. Louis at St. Barnes children hospital, which is about 130 miles from where I grew up. That dude was much better. the proper care is crucial.b,121b,121anyways, I spent 3 or so years trying to figure out the right combo of meds as I always felt zombie-ish. After finding the right pill I have been on it ever since. 15 years or so. I would say ask for the generic for sure since your friend has no health insurance. my generic valproic acid is 35 for a months worth whereas my name-brand version, depakote, was 150 for a months supply.b,121b,121in terms of driving she should be able to drive if medication adequately supresses her seizure activity. her doctor will sign a form to be presented at the DMV and then she should be good to go. Getting the doctor to sign it may require some tests that could be costly though. also let your friend be aware that she should do the homework and figure out if she needs to take any vitamins to counteract any negative effects the perscription has on her body. for example i should be taking a few things...among them vitamin b complex.b,121b,121I would recommend your friend start eating cherries frequently. Prior to the medical care we have in this day and age cherries and specificaly cherry juice was the treatement for seizures. I drink cherry concentrate and think it helps some. but then again maybe im just being hopefull.b,121b,121b,121Im at a point, and ive ben here at leat 10 years, where I know the way my body works. I can tell if I am more prone to seizure activity by the way I feel. So I just shut everything down pretty much. try to go into a room and shut out light, sound, and just relax. let all that extra mind activity subside. I get the little ones most of the time (the ones where you are awake). I have a big seizure about every 5 years (usually when i stop taking my meds on accident).b,121b,121if you need anything pm me
  • vajdaijvajdaij 447 Posts
    I suffered a double skull fracture when I was 15, and developed epilepsy as a result. I took 500mg Dilantin daily to prevent seizures, which completely slowed my brain down. I felt tranquilized (as opposed to tranquil, see), gained a bunch of weight, had my HS grades suffer, my gums recede, etc. I suffered a couple grand-mals and a lot of psychomotors when I left the hospital.b,121b,121When I entered college, I decided that I didn't want to take it any more, so I weaned myself off of it over about 6 months. I didn't have a doctor's supervision during this, which seems incredibly stupid now. I've been seizure-free for about 10 years now. Feel free to PM if you've got questions; I know KK may have mentioned it to you.
  • soulmarcosasoulmarcosa 4,296 Posts
    Quote:h,121b,121I suffered a double skull fracture when I was 15, and developed epilepsy as a result. I took 500mg Dilantin daily to prevent seizures, which completely slowed my brain down. I felt tranquilized (as opposed to tranquil, see), gained a bunch of weight, had my HS grades suffer b,121b,121h,121
    b,121b,121This is another thing that I'm worried about now, judging from her experiences w/ Keppra in the past 4 days. She's been out of work and sleeping most of the day, feels disconnected & always tired when awake, and my conversations with her have been odd to say the least. Her mother doesn't speak english and I don't get the feeling that her brothers are being very proactive about her getting good treatment or looking into insurance/aid options. It's frustrating. But again, thanks everyone for your stories - it's helping me get a better picture of what to expect, and I've been reading them to her.
  • PlantweedPlantweed 394 Posts
    Neil Young has epilepsy. Says he didn't like the drugs and controls it with "mind over matter."
  • CousinLarryCousinLarry 4,618 Posts
    My Dad had major brain surgery due to a car accident about 20 years ago. About 8 or 9 years ago he had a seizure in the middle of the night. He banged up his head really bad but that was about it, they did a bunch of scans and the Dr. told him he couldn't believe he was able to tie his own shoes or even speak with the amount of brain damage he suffered from the accident. He lost his license for a year, but never had another seizure and is doing all right now. b,121b,121It is amazing how powerful the human brain is, for all of its failings it seems to be good at finding ways to repair itself overtime. It sounds like with the trauma your friend suffered there will be a period of adjustment, but surviving the initial fall was the biggest hurdle, she will get through this. b,121b,121The insurance part will be the biggest bitch though. My wife was uninsured during grad school and got an ear infection that was beyond the scope of what they could handle as Student Health. It took a while but we got her into a program at a local hospital that allowed her to see doctors in their system for free. Might want to look into something like that.
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