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Reply To: | St. John's University Cerebral Palsy List |
Date: | Tue, 28 Mar 2000 15:24:46 -0800 |
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Hi all,
I had another siezure, maybe two, yesterday. In the morning I got really dizzy and was unable to walk. This has happened a few times and my neurologist referred to it as "intermittent intoxication" from meds levels getting too high. Of course he told me that then put me on extended release tegretol, but a higher dose. I now take 1200 mg/day plus 600 mg/day of Lamictal.
In addition I told him that I always seemed drowsy or drugged, but he still raised my daily dose. I am totally aggravated by this and have told him I am tired of playing a medication game and want to try a different treatment. After all I have been on 5 different medications(phenobarb, Zarontin, Clonopin, Tegretol, and Lamictal) none of which seem to control the seizures.
I know there are a few different treatments available. The first I have heard about is the ketogenic diet. I'm not sure how easy this is to follow because of having 7 other people(my wife and 6 kids) in the house. Can anyone give me information about this?
Another I've heard about is HBO(hyperbaric oxygen) treatment. I have also heard about this being treated for CP muscle-related problems. Any imput is appreciated.
The last is VNS surgery/treatment. Honestly this is the one I would like to look into most. Seems as though it works pretty well for people with not too many side effects. Does anyone on the list have any experience with it that might help me?
Whichever of these three treatments get used would be appreciated, by I'm so sick of playing a medication game that I think I'm going to switch doctors until I find someone who will use another treatment besides meds. Like I said I would like to look into VNS, but if something else will control the siezures without knocking me out like the meds do I'll jump at it real quick.
Dave
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