Has anyone ever been successfully weaned off their epilepsy meds?

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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.
You know I never thought of it that way. I was much younger and not to smart on seizure meds. But I do know that I don't think I could survive in society with out them. And believe me I've been on so many going all the way back to the Depokeen when i was a kid. I'm now on 3 Tegregtol Keppra and just started Lamictal. (last 2 are generics) Plus I take one to help with anxiety so techically thats 4. I've gone through bio feedback. I've had a suppliment expert look into my eyes and tell me my pancreas was the cause of my seizures. Believe me I am not here to advocate for the drug companies. My daughter had seizures as a baby when she was 4 she had been on the same dose for 4 years. Her neurolgist wanted to leave it the same even though she had'nt had a seizure in 4years. I told the neurolgist that the same dose she was on when she was a baby and he'd see us in another year. I told the doctor there was no way it could be at a theraputic level in ther blood. He looked at me like I had a third eye ball and he started taking her off. She has not had once since. I wasn't going let him keep her on the depokeen when she did'nt need it. Unfortunately I need it even if the TC was caused by the weaning off the med. As much as I hat taking, buying, and living with the Meds I know I am stuck with them.
 
My ex girlfriend told me about a friend who was seizure free nine years and weaned off meds.He worked in an office,went to use the photocopyer,im not sure was it flashing lights off the machine or not,but then had a seizure right there on the spot.So he was straight back onto medication.Unfortunate story.
 
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.

I remember reading about your daughter when I was more active on this thread. It has been a true inspiration as my gut feeling tells me its in my gut (lol).

Karen; sorry to hear about the trials the errors you're having to go through with your son. I hope you find a solution you can ultimately be happy with.

So this weekend had its ups and downs. Was severely depressed Saturday morning and also physically "off balance" in a shaky kind of sense. Took a GABA, slept it off and felt better when I woke up. My moods have been akin to a pregnant woman and I'm a little scatter brained.

Of course, these symptoms sound discouraging but I haven't given the gluten up completely. It's so hard! I still drink a fair amount on the weekends (including wheat beer) and that is something I definitely have to dissolve if I'm going to make any progress. Also been slacking on the fast food.

That being said I'm gonna weather this thing out. At least Depakote isn't affecting my dreams anymore!
 
My ex girlfriend told me about a friend who was seizure free nine years and weaned off meds.He worked in an office,went to use the photocopyer,im not sure was it flashing lights off the machine or not,but then had a seizure right there on the spot.So he was straight back onto medication.Unfortunate story.

How fast did they wean?
 
Thanks, Googly. I think we're approaching seizure freedom again. Jon's only had 2 this month, and we're hoping to make it one month seizure free (which is a heck of a lot better than up to 9 seizures a day like he was having in October). I think we've settled on Zonegran as the current med of choice (since most others don't work), and that combined with the Ketogenic diet (which got tweaked a number of times) seems to be working well.
 
Just stopped medication.
I have been on epilepsy drugs since I was nine. I went through a phase of trying each and everyone, until the doctor just prescribed epilim which I could live with.
That was seventeen years ago. In the last five years I have been seizure free, driving and really just getting on with my life normally.
Recently, I have wanted to give up the medication.
At first it started because I wanted to get pregnant, but more recently I have discovered the level of liver damage seventeen years of epilim can do to a person.
I am healthy, fit and active. I consulted my neurologist and asked about becoming pregnant and also coming off the medication.
He has advised me against coming off the medication.
However, I was most insistent and last October, I was weaned off the epilim.
I was absolutely fine, no petit mal, no auras, no funny twitches in my sleep.
Any time I had missed my medication earlier, I noticed straight away and would have to go back on them(that was when I was sixteen).
Although no petit mal, I did have one grand mal seizure in Late January.
I work from home so it hasn't affected me much really. I do have to stop driving however until I am seizure free for a year.
Even though there has been this set back, I am not feeling at all like I used to as a child/teenager when I stopped my meds.
I feel fighting fit, relaxed, have no problems concentrating, no issues communicating, even when I am tired.
Generally feel great and a lot more alert. Have lost weight too as a result.
I am giving it a try for another six months to see how I get on. Of course I am in contact with the neurologist.
I have an EEG tomorrow to analyse my brain for the first time in over ten years, so I am looking forward to the results.
I know I may appear to be deluded in some desperate hope that I am cured, but I don't see why I should compromise with these side effects when I didn't have a seizure for over five years.
I will let you know how I get on, but please reply back if you have recently stopped medication.

Please don't stop your medication without consulting your doctor.
Best of health to you all,
Rnr
 
weaning off tegratol right now.1st week of 9 week stretch

still on potiga and topamax
 
Thanks C0urt.
Sounds like you have had a rough time of it.
I was on tegratol for a short while. It was awful, it made me as sick as a dog and didn't help with the seizures!
I don't mean to pry, but what made you decide to wean off the tegratol?

I am keeping my fingers and toes crossed for you. Keep us posted on your progress.
Rnr
 
i am on the max dose, weight loss and i have liver and kidney damage and starting to drag my right leg. issues with memory, and and since i am still am still having breakthrough seizures and headaches. lets see if we can work a few possibilities out of the mix

plus shit, why not
 
Just stopped medication.
I have been on epilepsy drugs since I was nine. I went through a phase of trying each and everyone, until the doctor just prescribed epilim which I could live with.
That was seventeen years ago. In the last five years I have been seizure free, driving and really just getting on with my life normally.
Recently, I have wanted to give up the medication.
At first it started because I wanted to get pregnant, but more recently I have discovered the level of liver damage seventeen years of epilim can do to a person.
I am healthy, fit and active. I consulted my neurologist and asked about becoming pregnant and also coming off the medication.
He has advised me against coming off the medication.
However, I was most insistent and last October, I was weaned off the epilim.
I was absolutely fine, no petit mal, no auras, no funny twitches in my sleep.
Any time I had missed my medication earlier, I noticed straight away and would have to go back on them(that was when I was sixteen).
Although no petit mal, I did have one grand mal seizure in Late January.
I work from home so it hasn't affected me much really. I do have to stop driving however until I am seizure free for a year.
Even though there has been this set back, I am not feeling at all like I used to as a child/teenager when I stopped my meds.
I feel fighting fit, relaxed, have no problems concentrating, no issues communicating, even when I am tired.
Generally feel great and a lot more alert. Have lost weight too as a result.
I am giving it a try for another six months to see how I get on. Of course I am in contact with the neurologist.
I have an EEG tomorrow to analyse my brain for the first time in over ten years, so I am looking forward to the results.
I know I may appear to be deluded in some desperate hope that I am cured, but I don't see why I should compromise with these side effects when I didn't have a seizure for over five years.
I will let you know how I get on, but please reply back if you have recently stopped medication.

Please don't stop your medication without consulting your doctor.
Best of health to you all,
Rnr

Congratulations on coming so far! :clap: :woot:

Sorry to hear about the grand mal, but it might just be a fluke since your brain was so used to being supressed on the meds for so long. I felt pretty bad for abut a week just cutting back by a a small dose, but after about 3 weeks now I feel like I've leveled out and my auras have once again stopped. Best of luck to you!
 
Looking good so far

Thanks Googly,
I hope all goes well for you.
I had my EEG last Thursday, won't know results for a while.
No further attacks and don't feel any sign of jitteriness or twitchy so all is well.
I just hope it carries on like this.
Don't want another grand mal, but don't want to go back on meds yet.
We will see.
Fingers crossed.
 
My post for March.
No fits as yet. No jitters nothing.
Fingers crossed - it's been 5 whole months now and only one attack.
I see my Doctor again next month, so lets hope nothing happens.
 
Not yet, but I'm being weaned off my tegretol now. Last time I went 3 months without a seizure then suddenly had one. I'm being weaned off it very slowly.
 
Not yet, but I'm being weaned off my tegretol now. Last time I went 3 months without a seizure then suddenly had one. I'm being weaned off it very slowly.
Good luck with being weaned of the Tegretol.

I am also currently slowly being weaned of Tegretol which is being done slowly. I saw my neurologist at the epilepsy clinic on Monday & he was happy to go to the final stage of getting me completely of the Tegrteol.
I was on 200mg Tegretol both AM & PM, as well as 1000mg Keppra AM & PM.
When I saw my neurologist on Monday he asked me to stop the AM dosage of Tegretol but still take the PM dosage of Tegretol. I am to do this for a month then I can stop the PM dosage of Tegretol as well.

The neurologist has kept the Keppra at the same, if all goes well with my tapering of the Tegretol I hope that by May I will be going well on just Keppra.
 
Good luck with being weaned of the Tegretol.

I am also currently slowly being weaned of Tegretol which is being done slowly. I saw my neurologist at the epilepsy clinic on Monday & he was happy to go to the final stage of getting me completely of the Tegrteol.
I was on 200mg Tegretol both AM & PM, as well as 1000mg Keppra AM & PM.
When I saw my neurologist on Monday he asked me to stop the AM dosage of Tegretol but still take the PM dosage of Tegretol. I am to do this for a month then I can stop the PM dosage of Tegretol as well.

The neurologist has kept the Keppra at the same, if all goes well with my tapering of the Tegretol I hope that by May I will be going well on just Keppra.

Thank you. Good luck to you too. I go back to my neurologist in September. He's one of the rare very good neurologists at the hospital I go to. He will then decide to either take me off it completely or leave me on it for now. Hoping if ai come off it completely I last more than 3 months this time.
 
Thank you. Good luck to you too. I go back to my neurologist in September. He's one of the rare very good neurologists at the hospital I go to. He will then decide to either take me off it completely or leave me on it for now. Hoping if ai come off it completely I last more than 3 months this time.
Thankyou

The Neurologist I see at the epilepsy clinic started reducing my Tegretol in March last year, he started with reducing the Tegretol from 400mg AM & PM to the 200mg AM & PM. I was meant to only be on that level for 6 months but had some stress going on in September so I stayed on that dosage until I saw him the other day.

The last time I lowered my Tegretol I had very minor side effects so hoping it will be the same again. I am at day 4 of the med change & so far apart from feeling a little bit tired Yesterday it is going well.

Are you on any other meds or just the Tegretol?
 
Thankyou

The Neurologist I see at the epilepsy clinic started reducing my Tegretol in March last year, he started with reducing the Tegretol from 400mg AM & PM to the 200mg AM & PM. I was meant to only be on that level for 6 months but had some stress going on in September so I stayed on that dosage until I saw him the other day.

The last time I lowered my Tegretol I had very minor side effects so hoping it will be the same again. I am at day 4 of the med change & so far apart from feeling a little bit tired Yesterday it is going well.

Are you on any other meds or just the Tegretol?

Just tegretol. We had to slow it down a bit because a few months back we reduced it a bit too quick and I just couldn't wake up but was fine once we slowed it down. Think my dog Buddy knows too as he watches me take my tegretol.
 
They've tried weening me off carbatrol with lamictal and it has been unsuccessful. Instead now I am taking both medications for my carbatrol to control my grand mals and lamictal to control my absence seizures and petit mal
 
I have never heard of a cure? tried to wean myself off meds once and ended up seizing pretty bad.i am on Topamax and dilantin.
 
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