coming off meds

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charlieann

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hi all I'm new here ,
but not new to epilepsy I have been taking Tegretol slow release 700mg am and 800mg pm for around 15 years and I'm lucky enough to say it works for me I have been seizure free for most of that time,
What I wanted to ask people is has anyone been brought off meds successfully as my nuro is talking about bringing me off and it scares me . I love the idea of it as I truly hate taking them and the side effects are horrid ( I'm having a nasty day today feeling very ''fuzzy '' ) but the thought of having seizures again and losing my driving licence is terrifying ,
 
Back in Dec. 2013 I spoke to my neurologist and he told me that, "Since I hadn't had anything since 2008 I could get off of my Keppra 1000 mg. daily totally." I found this a little disturbing since everything I had heard said that you Never go cold turkey. So I told him. He said, " Well if it makes You feel better, go slow." Which I did. When I got down to 500 mg. daily I started to have auras and so went back up to 1000. Since then I have changed neuros and am still well maintained on 1000 mg. daily of Keppra. I have been Very lucky because I do have a warning and have never hurt myself or others. Sooo I think you should be Very careful on getting off totally.
I have come to accept that this is how I have to live and so I do what I have to. I have 3 grandkids that I see all the time and living in Fl. I Can Not afford to lose my license. So this is what I have to do.
Good Luck!
M
 
I agree -- slow withdrawal from meds is preferred if at all possible. A slow taper -- usually as slow or slower than the initial ramp-up -- tends to minimize withdrawal side effects, and can also give you the time to see how you feel throughout the process. You could also ask your neuro about having an EEG done at various points during the taper to see if abnormal brainwaves start to appear as the medicatioon levels drop.

You could also ask about reducing your dose very slightly (rather than withdrawing altogether) to see if it helps with the Tegretol side effects you are experiencing.
 
thanks , I think he plans to lower it slowly he sent me for an MRI scan to check if anything had changed and that was all clear .
I see him in two days time so I shall wait and see what he says . I must admit after so long I love the idea of finding out what it is like without these meds in my system. It would be nice to see if my memory comes back !! lol nobody even bothers asking me to remember anything these days as memory is so poor!! lol
 
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