Weaning off of Phenobarb

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letaek

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Hi - I will soon be starting to wean off of 120 mg of Pheno under my neuro's supervision. I am curious as to whether anyone on this board has weaned successfully off of Pheno after an extended period of use.

I had my first grand mal at age 14 (33 years old now) after which I was placed on Dilantin. I reacted poorly and was switched to Phenobarbitol 120mg and Klonopin .5

Recently I weaned off of the Klonopin and am now at month 3 of klonopin freedom!

I am going to go super slow with this wean but still scared. During the klonopin wean I suffered from awful anxiety.

Have any of you had a good experience weaning off of Pheno? Thanks!!
 
I was on phenob. and dilantin for about 34 years.
My FP (who told me she could see me for my seizures) she wanted to change my medic. saying they were old drugs, that there were new ones that were much better for seizure control and less side effects.

I lose count of all she tried. I felt like her guinea pig with all the side effects and seizures I was having. I asked to be refer to a neur.

I'm on dilantin and klonopin 0.5mg.

With these two medic. I have only had a seizure when I have been presc. an antibiotic. or taken vit. D.:twocents:
 
Did s/he wean you slowly? And are your eeg's normal? Just curious & thanks for responding!
 
I'm sorry - I don't answer your question.

She slowly took me off while adding another medic. at the same time. which she added slowly.

I tried coming off the klonpin slowly, but I went into such panic attacks, I couldn't stand it. Was that hard for you?
 
I was also I phenobarb with tegretol. I was weaned off because I told my neuro I had gone10 years with out a seizure and I was sick of tiaking the meds. She agreed and weaned me off both slowly. I had a seizure a week into weaning off. At that time she put me on Tegretol XR and I never went back to the Phenobarb. That was 15 years ago. Even though I'm still on meds I don't miss the way the Phenobarb made me feel and act. And neither does my wife! I don't know about you but it made me really moody ugly person.
 
Letaek I have been on pheno for 10 yrs have had e for 14 and we just tried taking me off 30 mgs in morning and 100 @ night mine went terribly wrong doc says body might be use to it cant go without it but I hate the way it makes me feal along with the other 4 aeds im on
 
I was on phenob many, many years ago. Switched to several drugs since.

I never noticed a transition issue with the phenob, but I hadn't been on it that long. Sounds as if you might have already beat a bigger monkey, Klonopin. Hang in there Letaek. It's my assumption you've already got by a greater hurdle.

Myself, would get lots of rest, drink purified water, take a multivitamin, drink fresh green drinks and only eat the healthiest of foods, lots of raw vegetables and fruits (all organic if possible). Keep the brain and body nourished well. Oh, did I mention I was vegan. :)

Good luck.
 
I am

like jyearta in that I was on both pheno and dilantin at the same time, years ago. However, I was on them both for 18 years together, went toxic and well, it was a long story after that. I don't like hospitals and doctors for a reason.

Anyway, no more pheno, but Dilantin and I had an on and off love affair that totalled another 17 years or so. And in the meantime I tried other NUMEROUS aed's. I added Klonopin into the mix about 8 years ago for myoclonics, and have gone off easily a few times to try other drugs.

I have landed on a cocktail (literally) that involves 4 drugs (Tegretol Retard/Carbatrol, Topamax, Lamictal and Klonopin.) I've been tonic-clonic free for close to 9 years...though all 4 types of my seizures are nocturnal. The others haven't occurred in a while either. I get an odd jerk now and then, but not a seizure-related one. My partner knows the difference, as they have E as well.

PLEASE take the weaning slow and easy. The slower the better. Pheno and Klonopin are both drugs that for a lot of people are not easy to come off of. For some people, they're a breeze.

Eat well, stay away from caffeine. Drink plenty of water and exercise. Keep your mind occupied. Do puzzles!

Know that there are people that will happily listen to you, and cheer you on.

We'll be here for you!
 
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