| | getting off tegretol and going on to nothing, advice?
When I was little i had convulsions and my doctors put me on Phemabarbatol. when I was five they took me off it. All through school I had these "weird" feelings that would pass quickly and no one would even know. I called them sick spells to which I could talk my way through and never have problems with. Eventually they turned into more dramatic spells where I would leave the room for no reason, couldn't talk, couldn't remember what was said or what I said and that's when I finally went to the doctor. That was fifteen years ago. My doctor based his opinion of my condition on a EEG and said I had temporal lobe seizures, partial complex seizures he called them due to a scar on the left side of my brain that was probably caused by a childhood illness. I took tegretol in the beginning at 6 pills a day. 200mg a piece. That was decreased over the years to only 4 a day and then down to 2 a day after I started having nightmares. I have done well on the two a day but the tegretol has left my world in a fog. I can't concentrate, can't think, can't remember things. I gained weight substantially and felt horrible I could do nothing to reverse that. Finally I went to my family doctor and asked him to change that. I told him I liked myself far more when I was smaller in size and less in a fog. As a writer I couldn't do anything now when it came to work. He agreed that I could come off the tegretol and see how it goes. My question is should I count my blessings and continue coming off the tegretol and not have any other medicines or should I be taking something to replace the tegretol? I am down to a 1/2 pill in the morning and 1/2 at night. So far no spells, no seizures, I'm doing good. I want to continue doing good but I don't want to wake up one morning and find myself in a state of seizures I can't control or that will take me and my family by surprise. I know I should seek out a neurolgist for advice but truth be told I have no insurance at this time. tests, doctors, we just do the best we can. The doctor I have now doesn't even order blood work because he knows I can't afford to have it done. That's just the state we are in right now. I am however willing to pay the extra amount for a different drug for my seizures if need be. I have been paying under $20 for my tegretol now. I looked into several medications and seem to lean toward the Zonegran for the less side affects such as weight gain, memory loss etc. My doctor says he will prescribe what ever I ask if I decide to go back on the medication but he makes no recommendations to me. Instead he says they all have their drawbacks leaving me to do the research on my own. I am flying solo here and very afraid of not doing the right thing. If ANYONE has any advice to give me, please do. You can post it, [ removed ] I just want someone to give me some advice on what they would do. as I said, I have done well cutting back and right now I feel better than ever. I just don't want to have any unexpected surprises waiting for me around the corner and be sorry I didn't have a back up drug waiting in the wings to take or be taking as I get the tegretol out of my system. Thanks for listening and I look forward to all responses! elicia
Last edited by moderator2; 08-03-2004 at 06:45 PM.
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