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Old 08-21-2002, 09:00 PM   #1
Bleubird
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Post New here... and need help

i just came across this site and was wondering if maybe anyone can help me....
i started having seizures almost 3 years ago. My first one was 3 weeks after i had my daughter. I have been having them roughly ever 3 weeks since. These have always happened in my sleep. The doctors have found no cause for them. I have had MRI's, EEG's (even the 24 hr one's) All my seizures have been the grandmals, although I am conscience for the majority of them. I normally wake up because my eyes feel like they are rolling back in my head. I can normally get out a sentence to wake up my husband. Before I start into the seizure. I can feel ...well it almost feels like an electrical current...going through me. And I get this taste in my mouth that tastes like i have dirty coins in my mouth. I am aware of what is happening and can hear what is happening around me during my seizure. For about 2-3 minutes then I black out. I am looking for anyone that could help me. I want to learn as much as I can about epilepsy that can possibly show me how to control these. I have been on Topamax, Depakote and Keppra and nothing is helping. Can someone point me in the right direction.

 
Old 08-21-2002, 10:34 PM   #2
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Tattoo HB User
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The best advice I can give you is to get your Primary Care doc to refer you to a Comprehensive Epilpesy Program. There is great facility at the Cleveland Clinic if you happen to be near there. There are others out there as well. Remember that not all of them will have your best interest in mind. some are good and some are good at research. you do not ewant the ones more interested in research! I am not familiar with people being able to consciously talk while having a seizure with the clarity of wakefulness. I recognize the metallic taste in your mouth. I have heard of that before. For some reason, I think it may be a side effect of your meds,possibly the Topamax. Please find a good Epleptologist, Epilepsy Specialist at a good Comprehensive Epilepsy Program. That is one of the best things you can do for yourself. Tattoo

 
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Old 08-22-2002, 07:03 AM   #3
Bleubird
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Thanks Tattoo,
I'll look into the program you mentioned.....

Thanks again!

 
Old 08-26-2002, 05:12 PM   #4
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Melissa Lynne HB User
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Before meds I had like a ..... peroxide taste in my mouth right before seizures. Have you tried lamictal? I have a good friend that has nocturnal epilepsy and the only thing that would control hers is phenobarbital. Good luck.... God Bless

 
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