Has anyone ever been successfully weaned off their epilepsy meds?

[jyearta]

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.

[lavatera]

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

[Nakamova]

I didn't have any withdrawal symptoms when I came off Dilantin.

As for Primidone: potential withdrawal symptoms are listed here: http://epilepsy.emedtv.com/primidone...ithdrawal.html

[RobinN]

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.

[lavatera]

Thank you for your input.

lavatera

[Dutch mom]

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%.

[lavatera]

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.

Have a good day,

lavatera

[stilldancing_98]

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.

[Lunameower]

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.

[lavatera]

Thank you for letting me know.

lavatera