tos8 i really feel for you. I just went through status 2 weeks ago and had to be airlifted to the hospital (UMC in Tucson) because I live an hour and a half away by car. the reason for the status was because I couldn't get my clonazepam which I take with neurontin to control my seizures. I have been told by many docs throughout my life that I was "faking" one time in HS I had a 2 hour seizure, lost ten pounds that night and they kept me in the hospital for tests for a week. Well that EEG showed nothing. I have only had one EEG that showed spikes. the last neurologists I saw was at the Mayo clinic in MN I used to live in Rochester, MN. Anyway, they did the video eeg twice when i lived thee and nothing showed so they said I don't have seizures. it was crazy. And they kept getting the stories wrong and the discharge notes were completely wrong and I complained to the nurse who said i had to take it up with the Dr. so after I got home I tried to make an appt. with that Dr. so he would change the discharge notes and he refused to see me! the resident who took the notes totally didn't listen to a thing I said and my boyfriend at the time kept telling him it was seizures that he had worked with people who have seizures before and mine were definitely seizures. One doesn't fake a seizure where there head ends up partially under the bed and they keep banging their head on the floor and the bedframe over and over. Or falling down the stairs and getting rug burns over every surface that isn't clothed etc. It just makes me so angry that these doctors make these claims just because they don't witness a seizure themselves.

i have also had a couple of good neurologists in my life. One was in Minneapolis but has since retired and one was At Yale New Haven. He was a little strange but still a good Dr.

I am also in your boat as far as my brain is considered after the status. i feel like I'm in a complete fog and my body (which hasn't seen any exercise in years because i have FMS and am now exercise intolerant) went through so much with those seizures that all I can do is rest for the most part and once in awhile get on the computer. I live alone and live in fear of having another seizure. Two nights ago i forgot to take my night meds which includes the clonazepam as well as other meds for the FMS. I didn't realize it until the next afternoon. But ever since then I have felt even worse and am afraid to go anywhere plus I don't even have the energy to bathe at this point. sigh. I never thought seizures would end up scaring me so much and rule my life. i know it's temporary but I am scared none the less.

Sara