PulpFiction
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Hi everyone. Just wondering if anyone else feels like the doctors have no friggin clue what the hell causes these seizures. I feel like I got this disease or god knows whatever it is during the wrong period In history. They just don't know enough about the brain yet. I'm on these waiting lists for specialists. Can't work, can't drive, can't be left alone. The gran mal seizures come on without warning, they put me on keppra and trileptal (sorry if I'm misspelling those). I've been a zombie, forgetting basic things, hairs falling out like crazy, neither medication has stopped or slowed the seizures. The only medication that somewhat curbs the seizures is Xanax, and that is not something I want to be hooked on for life. Now, like most of you I'm sure, google everything under the sun to try to figure this out and read these articles about PNES and the misdiagnosis of 54% of "epileptic" patients. I know I shouldn't believe everything I read but I just feel so helpless. I have a 5 month old and a 3 year old. I had a great career. I'm not ready to throw in the towel. My poor primary dr has been bombarded with my calls since he's the only one who I can actually get to see my promptly. My neurologist flat out said he couldn't and refered me to a specialist. The wait list is 2 months. I know it could be worse but I'm just so frustrated. I bet in 20 to 30 yeas they'll finally know what their talking about, have a cure, but now we're all guinea pigs.