Has anyone ever been successfully weaned off their epilepsy meds?

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I asked my old neur. once about coming off medic. --don't like the side effects. He told me that I would have to be seizure free for two years. and if the seizure did in fact come back, they could come back more sever, and there was a change that medic. will not be able to control them.

There have been times when I thought I too perfer the seizures, that the side effect of the medic. were worse than the seizures. THEN I would have a seizure then I perfer the medic. side effects and all.

I too am on dilantin, the dr. have tried MANY diff. other medic. - that the side effects are so bad that I didn't have any quality of life. So I guess I will be on dilantin forever, and that's OK, it is what works best for me.
 
Yes, I have but so far can only find side effects of meds. I have not found any sites talking about withdrawal symptoms, other than to withdraw slowly. I will try and google again, and see what I come up with.

lavatera
 
It would seem to me that withdrawal symptoms would be unique to each individual.

My daughter tried 4 meds. None were taken for more than 6 months. We finally after 2-3 yrs decided to take her off of all meds, and try alternative approaches.
Making nutritional changes, and finding vitamins and minerals that support brain and body health, has been the most effective.

She was not seizure free when we eliminated the meds, but realized that the occasional seizure was better than the multiple seizures while on meds, in addition to the side effects.
 
My son has tried over 10 meds unsuccesfully. When we finally started the ketogenic diet 7.5 years ago, he was on topiramate, ethosuximde and clobazam.
We had to wean off ethosuximide before starting the diet because ethosuximide (Zarontin and Ethymal) has sugar or non-keto proof sweetners in it that prevents adequate ketosis, there isn't a keto proof alternative. We weaned it of within a month time and saw no increased seizures.
When the ketogenic diet reduced his seizures significantly, we weaned of topiramate because of increased risk of having kidney stones together with the diet. We weaned it off in two months, and saw no increased seizures or withdrawl effects.
The most difficult one was clobazam, one of the benzodiazepines (which are very addictive.) We started to wean it off after six months on the diet when his EEG showed over 70% improvement. To wean off 10 mg clobazam, we reduced only 0.5 mg each three weeks, each time we saw breakthrough seizures and agitation for about 3-5 days, followed by stabilisation again.
For over 7 years now my son is med free on only the ketogenic diet. He is not seizure free, he does have seizures now and then, but his seizures decreased about 90%.
 
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Wow, that is amazing that you and your son were able to do that. I am so happy that the diet works for him. Congrats. :clap:

Have a good day,

lavatera
 
Hey Lava, I can not remember how many meds I have have been weened off of. But lamictal was one, I have gone lower on Vimpat and keppra because they cause depression. The doctor told me he didn't want to. But I couldn't live like that.
 
About six years ago I went off my meds cold turkey pretty much because I couldn't afford them and I didn't think I was doing too bad, well, bad choice. For two years I was seizure free, but then I woke up on my bathroom floor with paramedics staring at me. Since then my seizures have become more erratic and aren't responding to meds as well as they used to. Yeah, I felt great for those two years, I thought that maybe my seizures were gone, but now they are worse than ever.
I don't want to scare anybody or anything, but I learned my lesson.
 
felt I had to bump this thread since I've been going through this process for almost a year and a half.

Ok, so had 1 grand mal seizure when I was 16. Complex partials started when I was 10 and escalated to the generalized form. been on Depakote ER since. I'd say I'm 95% controlled on medication with mild auras here and there. I drive. I live independently and I've worked a stressful job at 4AM for 5 1/2 years!

Personally I detest the medication and am looking into alternatives such as a variation of the GARD diet, Indica marijuana, and supplements like magnesium powder, Taurene, and Valerian.

In these past 8 years all of my tests were normal. Began coming down from 1000mg in 8/11 to alternating 750mg and 1000mg every other night. Did this for 6 months. Then dropped down to 750mg every night.

Now a year later, I've started doing 750mg one night and just 500mg of ER + 125mg of standard Depakote alternating nights. I have to say this is the lowest I have ever been on my meds! I admit, I have some withdrawals such as mild mania/anxiety and that wound up feeling. However, the positives are outweighing the negatives.

People tell me I seem more present, articulate and the color has come back in my face. I feel like I am waking up from a hazy dream. Libido has also returned and that was the biggest reason for wanting to taper (c'mon I'm a 24 yr old man).

My advice is to go slower than what your docs tell you. If I ever get completely off of the Depakote, it will be over the course of 5 years of tapering. Good luck!
 
My advice is to go slower than what your docs tell you.
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I agree 100%. I tapered down very, very slowly from 250mg/day of Lamictal to the 150/mg I'm at now. I did it on my own initiative, since my neurologist at the time was very much opposed to any tapering whatsoever. (She wanted me at a higher dose -- 300mgs/day). Now, nearly 5 seizure-free years later, I'm contemplating reducing further. My current neurologist has said that if I want to try reducing my dose, he will schedule an EEG to see if abnormal brainwaves show up at some point during the taper. That will help me decide how far I want to go. It might also give me the impetus to try neurofeedback, since that works best when there is an abnormal EEG to work from.

I hope you have continued success. Is your doctor on board with your taper?
 
Our Jonathan was on Depakote when he started the Ketogenic Diet at age 7. After 6 weeks on the diet, he became seizure free, and after about 4 months on the diet, his epileptologist began weaning the Depakote because it was damaging his liver. We did it very slowly -- it took from June of 2011 to January of 2012 to complete the wean. We did not have any breakthrough seizures during the Depakote wean.

Unfortunately, after 1 year of being seizure free, and about 2 months of being med free, Jonathan had a relapse. For the first few months, we just tried tweaking the diet, in hopes that he would go back into remission. But the diet alone wasn't working. Then his neurologist put him back on meds. This time he went on Zonegran and Diazepam and later Keppra was added in.

After about 2 months on Diazepam, we began to wean that one, because it can get too addictive after awhile, and was causing some bad side effects (aggression, etc.). We did that very slowly -- it took about 3 months to get him off of a small dose. Often, when we would taper a bit, we'd see an increase in seizures for several days, and then things would go quiet, and he would have less seizures than he'd been having before the taper. When we finally completed the wean off of Depakote, he had a really bad day about 1 week after he took the last pill. Depakote takes a long time to get out of the body's system.

Then we started weaning Keppra, because it didn't seem to be helping and was possibly increasing seizures. He wasn't on a high dose, and we pretty much weaned him off in about 1 month or 5 weeks. We'd see seizures for a day or two when we did each taper, and then he wouldn't have any seizures until the next taper.

He's now been off of all his meds (except Zonegran) for about 1 month. The reduction in medication has IMPROVED his seizure control. In the past month since we weaned the Keppra, he only had 2 seizures, and that was probaby because I flubbed 2 of his meals.

So, now he's just on the Ketogenic Diet and Zonegran, and this is probably where we'll stay for a long time, as long as he is able to tolerate both.
 
I hadn't had a seizure for probably 10 years or so...Dr. had been telling me some people go off meds with records like that. So all by my stupid self, I tried it; just cold turkey (it was mysoline). I was fine for 2 years. TWO whole years I felt like a new person. A couple times I felt euphoric, thought it was the clear brain...but now I do wonder about that (does anybody else think that might have been an aura of some sort?). Then BAM! t/c again. Back on meds again and they worked fine again, no changes.

Anything I've ever tried, has stopped t/c. A few switches due to allergies & such, but low doses have always worked. It's still a hard thing to live with, knowing there's this "thing" wrong with my brain. I feel so foolish complaining here with the stuff I read others go through, but it's been an incredibly difficult lifetime concerned about this every waking moment. Maybe if one dr. had ever told me "this is the reason why, this is the place, etc." I'd have something to understand and cope with. It's always been the not knowing that was so hard.

Sorry to hijack the thread. I just read a few things I never noticed in my Baby book from Mom in my 11th year, brought it all back.

Anybody trying to get off meds, I sincerely wish you the very best of luck.
 
I am currently on Tegretol & Keppra but I have been working with my neurologist at an epilepsy clinic to eventually get me on only 1 medication.
In March last year we started to the process of very slowly taking me of Tegretol, my neurologist lowered my Tegretol from 400mg twice day to 200mg twice day. I was supposed to stay on that doseage for 6 months. I had to go back to the epilepsy clinic in September & when I saw the neurologist I was under a lot of stress so he decided not to reduce the Tegretol while I was so stressed. I am due to go back to the epilepsy clinic at the end of March, my stress levels are currently low so I am hoping that when I see the neurologist in March he will be able to reduce the Tegretol more, maybe even take me of it.

I haven't had any seizures for 2 years & when I 1st reduced the Tegretol last year I only had mild side effects.
 
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Elsie -- that's wonderful to know that you were able to be med free for 2 years, and now can control the TCs with just a low dose. I know...it still sucks to have epilepsy.

CQ -- hope the Tegretol wean goes well. I'm sure you'll feel better just being on one med, if it can be accomplished.
 
KarenB said:
CQ -- hope the Tegretol wean goes well. I'm sure you'll feel better just being on one med, if it can be accomplished.
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Thanks Karen,
I don't have to many side effects on the meds at the moment but it would be nice to eventually just be on the 1 med again (It's been 9 years since I only been on 1 AED). Of course I don't know what will be decided about my meds until I see my neurologist at the clinic in 5 weeks (25th March) lol.
 
CQ I hope you can come off the Ttegretol. I came off my meds once after I had my right temporal lobectomy. I had been seizure free for at least a year and was driving again and I told my doctor I was tired of taking them. Plus she always told me that the goal was to come off of the meds. She slowly took me off the Tegretol and before I had made it 2 weeks into coming off the meds I had a TC. I think think the doctor just wanted me to see that I was going to have to be on the meds for ever. That was 25 years ago. The only good thing that came from that was going from taking 8 pills a day to taking 2 because Tegretol had come out with an XR.
 
After we weaned Rebecca off the medications she still had seizures... Fewer, but she still had them. It was only then that I could see how healing her gut and balancing her blood sugar was the therapy she needed. The meds were fogging the path. Slowly, over time she improved. Possible that she will have another one, some day, but that does not mean she should take a med daily, suffer side effects only because of the "what ifs". She has remained seizure free for over 2 years.
 
Robin, that's so great that your daughter is now 2 years seizure free and also med free. It just goes to show that more gentle dietary approaches to stopping seizures may be just as effective as meds (without the crappy side effects) -- and often more effective than meds.

Pita, I can't help but wonder if that one tonic-clonic you had when you tried to wean off Tegretol was a "weaning" seizure? By that, I mean, that sometimes when you are weaning off a drug, you will have some seizures during the tapering process, but it's like having seizures when you're coming off heroin or something -- it doesn't mean that the drug is controlling the seizures, but rather that your body has become addicted to the drug, and when you begin the wean off the drug, you go through withdrawals.

This happened to our Jonathan during his recent weans off of Diazepam and Keppra. Each time we would reduce the dose a little, he would have some seizures, but then after a couple days, things would settle down. Now that he's off both those drugs, he actually has far better seizure control than when he was on them. So...the weaning seizures didn't mean that he needed the drugs -- just withdrawals.
 
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