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Old 09-09-2011, 07:44 AM
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epilepsy review today


Sooo I have my bi-annual epilepsy review today with my gp. I've been feeling quite anxious about it, probably because I'm not sure Tegretol is working for me at all. This is the third med in as many years that hasn't worked. If anything its increased my seizures and the weight gain side effect is intolerable now. I've managed to lose 1lb since I posted my last topic on weight gain and Tegretol and that's because I've drastically cut down my calorie input.

I'm worried in case my doc or my neurologist gets fed up with me because we've not found one that works yet. The Keppra had cut down on tonic clonics but not partials but the Tegretol increased tonic clonics again =\

I'm not sure what else to bring up at my appointment, trying to compile a list but my brain is a big ole fuzzball.
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Old 09-09-2011, 07:53 AM
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I suppose an upside is that Tegretol seems to cancel out the kepprage and helps me sleep. Don't wanna make it sound all bad lol.
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Old 09-09-2011, 08:48 AM
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Neither your GP nor your neurologist are allowed to get fed up with you! If the Tegretol is making things worse, both in terms of side effects and seizures, then there's no point in continuing on it, that seems pretty clear. Are there a few meds still left for you to try?

Let us know how it goes...

Last edited by epileric; 09-09-2011 at 09:55 AM.
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Old 09-10-2011, 06:30 AM
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Well I told the doc about the increased seizures and the side effects. I said that my seizures (the tonic clonic ones) are usually at night time but I had one during the day a couple weeks ago and really injured myself falling on what I assume was the coffee table. Ended up with a whole wad of bruises down my right side, including across my cheek, jaw and eyebrow as well as a stiff neck and shoulder.

So Anyhoo she said that I should try to contact my neurologist and get an appointment ASAP as it looks like the Tegretol isn't right for me. My blood pressure was sky high yesterday too. She said that if I couldn't get an appointment with the neurologist myself then to call her and she'd get me one.

She asked me about complex partial and simple partial too, but I explained that its very hard for me to tell as I live on my own now,,unless I obviously miss something or do something odd.

Edit to answer your question - I've tried lamictal, Vimpat and Tegretol which all seem to have bad effects or didn't work, and I've also been on Keppra which doesn't seem to be too bad. I'm still waiting for the MRI the neurologist mentioned last time I saw him in May.
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Last edited by Loopy Lou; 09-10-2011 at 06:35 AM.
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Old 09-10-2011, 11:09 AM
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Well, that sounds cautiously optimistic -- your GP is on your side and aware that your current treatment isn't working well.

Trying a new med is never pleasant but maybe there's one that will work better. I hesitate to recommend Zonegran because my experience on it wasn't great, but it IS an appetite suppressant, so it's unlikely you would gain weight on it. And there's Depakote and Topomax and some new one whose name escapes me right now...
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Old 09-11-2011, 01:03 PM
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Lou,

A doctor who is listening to you, and doing some research. This is really good news. Hopefully she'll figure something out that works, and is tolerable for you. Even better is if she refers you to a new neurologsit that she knows is good, and talks to her in advance for you.
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Old 09-11-2011, 07:01 PM
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Well tomorrows Monday so I guess I better get on the phone and run up my bill in an attempt to get an appointment. The neurologist I have is ok when I do get to see him, its just that I constantly seem to get "lost in the system" when my appointment is due or when any tests are suggested.

Oh, to have some meds that worked lol >.<
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