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TLE Anyone?
Sun, 02/26/2006 - 18:22Hello to all!
I've been recently diagnosed with left TLE and am not currently on meds. I don't know if I want to try them again as I had a violent reaction to Tegretol. I'm going for a second opinion tomarrow with a Neuro in Pittsburgh. Any advice? I don't lose consciousness and can still drive.
Any words of wisdom from anyone?
Cyndie
Comments
Re: TLE Anyone?
Submitted by solis on Tue, 2006-05-23 - 13:35
Hi Cyndie,
I've had TLE since I was 3 and since that time I've been on meds.
It wasn't until I was sent to an epileptologist (= a neurologist that focuses on the over 40 types of epilepsy) as opposed to the typical neurologist (that takes care of all brain and spinal-cord mdical issues) that I finally got controlled.
Sadly that control disappeared after over a decade (a nice car accident that physically hurt nobody but made me an emotional mess since I then realized what I had missed all my life and was losing again).
I had neurosurgery last January and haven't had any seizures since.
~sol
Re: Re: TLE Anyone?
Submitted by ritab2002 on Tue, 2006-05-23 - 16:09
I also have TLE but only for the past 2-3 yrs and not diagnosed until 1 yr ago when I had one G Mal. I am currently seeing a neurologist and have considered asking about seeing a epileptologist since my seizures are not controlled even though I am on 1000mg Keppra 2x a day. I recently saw my nuero and he suggested upping the Keppra. I have 1-3 seizures a day and have not really spoken to anyone who has also had them. Sometimes I even wonder if I have been diagnosed properly? any thoughts/suggestions would be appreciated.
Rita
Re: TLE Anyone?
Submitted by heidi on Tue, 2006-05-23 - 12:57
Cyndie, I am new to the list--I've been "tentatively" diagnosed with TLE. I had an inconclusive EEG, and since I don't have health insurance, they're trying me Keppra, which I can get in sample form through my neurologist. I guess the other path would have been to do an MRI, if I had health insurance, but my doctor said that Keppra is a relatively "clean" medication, and that's why we're doing a diagnostic trial with it. It's the only med I have experience with, but so far the side effects haven't been overwhelming. This is quite a late response, and I'm sorry about that. I'd be interested to hear what other experiences you've had in the meantime with TLE. Although that's not my definite diagnosis yet, my symptoms fit it, well, to a T:) --Heidi