Medical: Trileptal/seizures.
February 3, 2005 9:58 PM   Subscribe

Dangerous lack of health care! I've been taking Trileptal for the past 2-3 years. I recently stopped taking it (about a week and a half ago) because no insurance + no job = no pills. Obviously, I'll talk with my doctor, but I don't think I want to go back on. (More inside.)

I was put on the meds because of an unexplained series of seizures--doctor couldn't diagnose it, so he slapped a "seizure disorder" on me and gave me some pills. I'm thinking it was stress (moving out, starting school...), but then I'm not a doctor.

Anyway, I already feel more lucid and creative than I have for a very long time. I mean, yeah, the constant threat of seizures, that's kind of a downer. And I've got the same low-grade nausea that accompanied my first month on the meds going on right now.

I was just wondering if anyone had similar experiences going off the drug, and what else I could expect before I get a chance to give a doctor $200 for a 5-minute checkup.
posted by billybunny to Health & Fitness (17 answers total)
You'll forgive me for answering the questions I think you should have asked, instead of the one you actually did, I hope.

a) It's really not a good idea to stop anti-epileptics cold turkey. Even folks who've never had a seizure can be induced to have a seizure this way. It's better to slowly decrease the dose to zero over a period of a few weeks.

b) There's not enough information here to predict your chance of seizure recurrence. If you want to email me, we can discuss that a bit more. It depends on things like what kinds of seizures you'd been having, what sort of risk factors you have, how old you are, etc etc.

c) If 'low-grade nausea' means 'intermittent funny feelings in my abdomen, like something was coming up', that's actually a very common way of experiencing a partial seizure. Which is not good.

d) If Trileptal worked for you, carbamazepine generic would work too, and it only costs about $11 a month. The disadvantage is that it's a three-times-a-day med. The twice-a-day carbamazepine formulations are as expensive as Trileptal.

e) Until you get this sorted out, try to get lots of sleep. Avoid baths - take showers instead; don't go swimming; and leave the toilet seat lid down. And don't go on any long car trips. In most states you're not legally allowed to drive for a period of time after going off meds, but it's also very bad to have an accident during a seizure. Conscious people retain at least some control of the car during an accident. Epileptics tend to stiffen and flatten the accelerator pedal, which is not good.

f) I am an epilepsy specialist, but I am not your epilepsy specialist, and I can't be responsible for what you do with the information I've provided you! Please see a doctor pronto! If you were in NYC, I'd be happy to see you at my free clinic, but I see you're in Indiana.
posted by ikkyu2 at 10:54 PM on February 3, 2005

I was on Trileptal for bipolar disorder, not seizures, so YMMV, but I also found (in retrospect) that taking it put me in a kind of daze, and when I stopped taking it, I was really surprised at how much more lucid I felt without it. My creativity increased too, but I suspect that had more to do with the manic depression than the drugs.

Another thing I found with Trileptal was that it left my system really quickly and even after just a few days without it, taking my regular dose again knocked me out to where I couldn't move from the bed for about 16 hours. So if you do decide to go back on it, I would recommend working your way up the dosage (not sure what dosage you were at or for how long) the way they have you do when you start taking it (for me, it was a quarter pill every day for about a week, then stepping it up by a quarter pill every 3-4 days). Good luck - I hope you don't end up having to go back on Trileptal in particular if it was making you hazy; I was amazed by how much better I felt when I quit taking it.
posted by pikachulolita at 11:12 PM on February 3, 2005

As an epileptic who has gone off of his drugs, though in the way ikkyu2 describes in (a), I would like to congratulate you on the idea. I went off because of lack of insurance as well, but in general I think it's good to avoid drugs if you can.

However, you should be safe. Driving is the real problem. I live in NYC, so I don't have to worry about killing people if I should suddenly have a seizure. Frankly, avoid driving if you can.

The other thing is that you should be careful to let the people around you know that it's possible that you could have a seizure. Let them know the basics of taking care of the situation, and when they should and should not call an ambulance. I have been saddled with a great deal of debt because my companions didn't understand that certain events didn't necessarily require an ambulance. Then again, if they hadn't, and the seizure had gone on too long, I might not be here to write this. So let your friends know. Besides, being epileptic is kinda cool!

ikkyu2, you have a free clinic? I haven't had a seizure in several years, but should I see a neurologist anyway? If you like, my email is in my profile.
posted by lackutrol at 11:23 PM on February 3, 2005

Also, I have no idea about Trileptal, but was on Dilantin for somrthing like two years. Utter misery. I would have rather had the seizures rather than the constant fatigue, frequent nausea, and everything else. To this day, I can't have a martini because Dilantin made me so sick at the smell of gin. My wonderful doctor put me on a better drug, but I am also off of that, only because I couldn't afford it after losing my last job.
posted by lackutrol at 11:33 PM on February 3, 2005

It's way horrible to quit an anti-epileptic without titrating down - I don't know what's appropriate at this point, to go back on it a little, or what - you have to talk to your doctor.

I'm on Trileptal too (epilepsy), Dilantin before that. I don't particularly know why I'm not on the generic version, but that's another topic. Anyway, yeah, I get fatigue, short term memory loss, reduced dreams, etc., mostly in a mild caliber. I'm definitely staying on the meds for a couple years at least - the theory is (I think especially in children's or adolescent brains like mine but in general too) that if you stay on the meds long enough your neurology may have responded over time and your seizures may go away. Of course, it's up to your doctor to decide with you when that point is, which is one of the many reasons why it's way better to have a specialist if you can afford it.

If you drive, bear in mind that any time you drive off your drugs you're endangering your own and other's lives. Plus once you have a seizure, from a legal standpoint you're not allowed to drive for 6 months (in my state, it probably varies).
posted by abcde at 1:14 AM on February 4, 2005

ikkyu2: Thanks for being who you are. Its refreshing. I read your live journal and forwarded a link about AIDS to a physician here in South Africa (personal friend) who might be able to help move your question along. If you like, drop me a line, my email is in my profile.
posted by Goofyy at 2:41 AM on February 4, 2005

I also think ikkyu2 is someone special, and echo those thanks.

billybunny: Your doctor will surely offer you a supply of anti-seizure meds from the office's internal supply. The doctor's office probably is the first place to start in getting a referral for medication expense relief or free meds. Almost every community ( I see you are in the Us/Indiana) has an emergency program for people who take "critical" medications and have no way to obtain them. It would be likely be worth your while to make an application to local help agencies.
posted by reflecked at 3:35 AM on February 4, 2005

Hey... if you're having trouble accessing good resources, you should check out your local epilepsy foundation affiliate. They're good folks and can point you in the right direction...
posted by ph00dz at 4:46 AM on February 4, 2005

Response by poster: Actually, I kinda rationed myself down. I was aware of the dangers of "oh! no more drugs! nooo!" when I noticed I was getting low, so I started breaking pills in half and what not. I went down in dose over the last two weeks or so.

Some clarifications:
I've got an appointment to see my doctor. You have all the information I have, there was no reason found for the seizures. It was pretty much, "hmm, ok. well, trileptal works for seizures, try some of that."

"Low grade nausea" means "the smells of lots of things that don't usually make me sick are making me sick." When I first went on the meds, I had a problem with large flowering trees outside where I lived. The smell would make me sick, but nobody else noticed it. It passed, and it seems like this is starting to pass. I can eat bagels again, at least.

I drive pretty rarely, I live in an area with a good public transportation system. Everyone around me knows about the "disorder," and everyone in town has a cell phone anyway, so ambulances of debt aren't far off.

Thanks everyone.
posted by billybunny at 7:09 AM on February 4, 2005

Please, please don't base your decisions on other people's experiences. Ikkyu2's advice is very good, and very generous.
Epilepsy is very complex.

There is nothing wrong with telling a doctor, I can't afford this, or I don't like this medication because it dulls my creativity. Finding practical solutions is part of a doctor's job. Trust me, it's worth $200.

Epilepsy does NOT come from stress. (If it were, I am sure I'd be on a dozen medications). I know that for some people seizures are very dangerous, and that they can increase in severity.
posted by gesamtkunstwerk at 7:18 AM on February 4, 2005

Response by poster: I appreciate the concern, but I'm not basing my decisions on what's been said here--I've already made the decision, I'm just looking for experiences and advice.

As I've said, I'll be talking to the doctor about this. Believe me, I wouldn't base something like this on anecdotes and online sources.
posted by billybunny at 8:08 AM on February 4, 2005

Carbamazepine/Tegretol can be dangerous and must be taken with regular doctor's visits to monitor its levels in your blood. Also, it attacks a different part of the brain, so it may not work for you at all. However, the "creativity" you're experiencing off your meds sounds like TLE, which can be hard to diagnose, and which Carbamazepine/Tegretol is one of the drugs for.
posted by scazza at 10:50 AM on February 4, 2005

And the low grade nausea/partial siesures you are experiencing are also associated with TLE (temporal lobe epilepsy).
posted by scazza at 10:51 AM on February 4, 2005

Also, I'll second that carbamazepine (Tegretol) is extremely similar to Trileptal in mode of action and about a fiftieth the cost for the generic (more potential side effects but they're not mental ones if I remember right). So make sure to bring that up with your doctor.
posted by abcde at 10:57 AM on February 4, 2005

scazza: I don't think increased creativity without the drugs is necessarily TLE. Like SSRIs anti-epileptics can have the effect of reducing range of emotion and creativity.
posted by abcde at 10:59 AM on February 4, 2005

I'm not diagnosing, but depending on how strong the creativity is, it is hugely associated with TLE seisures and interictal periods. He also said his doctor was having a hard time diagnosing him, which I have had problems with. More in that MeFi link I posted.
posted by scazza at 11:15 AM on February 4, 2005

Having read your description about episodic nausea triggered by smells, I wonder if maybe you don't have classic migraines, that were being treated (prevented from occurring) by Trileptal, which is a decent drug for migraine prevention.

Still, episodic attacks of nausea or abdominal discomfort in someone who has had seizures is always a seizure red flag to me until I have convinced myself otherwise.

Creativity is hard. I do read the literature about it and TLE, and listen to my cognitive neurology friends talk about it and how it changes with certain brain disorders, but I'm afraid I only understand about half of what they say - if that! I certainly don't base my diagnoses on it!
posted by ikkyu2 at 7:19 PM on February 4, 2005

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