Withdrawl from Tegretol Retard

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trap55

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Hi all, am new here and so pleased to find this forum, have been on T.R for about 13 years now and today is my first day of withdrawl and i am pretty scared after it controlling my sizures for all this time. I am suffering nasty side effects and have been for some time, the neurologist i saw last year thinks i have about a 75% chance of staying seizure free, has anyone had any experiences of with drawal from this one that might be of some help to me as i am scared of all this. I have been taking 800mg a day. 200 in the morning and 600 at night as i have nocturnal seizures. I am going to be reducing my intake by 100mg a month.

thanks Tracey
 
Hi & welcome

I"ve been on tegretol CR (retard, or XR in the US)for close to 30 years. I"m lucky to not get too many bad side-effects and I've never tried to go off of it totally but if I ever forget to take it at night I know the next morning my only side-effect is to feel unusually alert, energetic & bright.

Remember that one of the main triggers for seizures is stress so try not to stress yourself out too much. Your neurologist is smart in that he's tapering you off of it pretty slowly. You probably won't notice much if anything at first.

Also, I hope you don't mind. I moved your post to the foyer so that everyone can welcome you to the site.
 
I just stoped taking my Tegretol XR after using it for 5 years. I now take Keppra XR 3000mg amd Lamictal 400mg per day. Before that, I was just taking Keppra XR and Tegretol XR each day.
Now that I'm off of the Tegretol XR, I haven't noticed many side-effects from withdrawl of it.
When I reduced it and tried to get off of it myself, too fast, I started having longer complex partial seizures as well as drop attacks. It takes 3 days to totally get out of your system before problems start up.
I had to find this out the hard way. But now that I'm off of it.. I am happy.

Now waiting to see how well the Lamictal added to the Keppra XR will work out.

Hope all goes well for you..
Crystal
 
This is the first drug that was tried on Rebecca, and she quickly ramped up to 400 mg.
It caused vision problems that were unacceptable.

Can you begin by only eliminating 25 mg, or 50 mg for about a week? Going slower than what was recommended was helpful for Rebecca.
 
Thanks for your replies, i was really scared last night going to bed on a smaller dose but had a good nights sleep and feel more positive this morning. This is my first time in all these years that i have tried to come off my drugs so will see how i go. I dont have the option of coming off them slower because i can only cut the tablets in half so it has to be a 100 mg at a time, good idea though so thanks. Its great to find a forum like this
 
trap55 said:
I dont have the option of coming off them slower because i can only cut the tablets in half so it has to be a 100 mg at a time, good idea though so thanks. Its great to find a forum like this
Click to expand...

You may want to ask the pharmacist (chemist) to give you pills of a smaller dose rather than cut them in half. Remember if you're taking a retard pill that it's the coating that makes it slow release & that's not going to work if you're cutting them in half.
 
epileric said:
You may want to ask the pharmacist (chemist) to give you pills of a smaller dose rather than cut them in half. Remember if you're taking a retard pill that it's the coating that makes it slow release & that's not going to work if you're cutting them in half.
Click to expand...

I asked the pharmicist yesterday about this and she told me they dont make this drug in a smaller mg and that it would be ok to cut them in half. Maybe i should ask another one the same question. ?????????
 
trap55 said:
I asked the pharmicist yesterday about this and she told me they dont make this drug in a smaller mg and that it would be ok to cut them in half. Maybe i should ask another one the same question. ?????????
Click to expand...

Ask another pharmacist if you want but after re-reading your initial post, maybe only having 100mg on quick release won't have that much of an effect if you're taking a total of 800mg/ day.
 
I wouldn't worry about your seizures beginning once again. I was on Tegretol for many years, and found it worse as I went on. Then slowly my neurologist had me go from Tegretol to Keppra. I now take 2000mg of Keppra daily, and instead of having the twice-monthly, multy seizures (usually 3 in a row on the same day), I have one per month, always 'round full moon time, most often happening within one hour of waking up. If you've been seizure-free as long as you state, just try reducing a bit at a time. But definitely do not lower your dose by yourself. Always have your physician's advice.
 
Well last night was my third night of withdrawl and so far so good. thanks everyone, for the great support so far i have learnt so much in the last few days after just popping my pills for so many years and being in a so called safety net for so long.
 
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