I have only had one positive EEG and it was when I was 13 years old, one year after they had started. i am now almost 50, and have never had a positive eeg and I have had two of the video eegs where you stay of a number of days and they try to make you have a seizure, nope never happened. so, the last neurologists I saw which was some years ago now tole me they have no idea what is causing them but it can't be epilepsy! So, now I am just being followed by a family med doc who has prescribed neurontin(also for FMS pain) and clonazepam (also for sleep for FMS) I am also on cymbalta for depression and for pain of FMS. i also have undiagnosed CFS/ME. My doc won't do the tests needed for the diagnosis. I think it is because of cost (am uninsured) and I think he thinks that I just have FMs and is being weird about it. I recently went into status epilepticus, having at least 26 seizures in a row for over an hour with times of quiet(not convulsing but unconscious). Had at least 15 of the seizures with the paramedics there and had to be airlifted to the closest hospital as I live an hour and a half away by car from any hospital.
I had these seizures because I had been unable to get my clonazepam for a week and hadn't slept for two nights before.

Now my body is in bad shape and i'm so sick and so tired I can't go out without getting more sick. i live alone and am so afraid of having even one more seizure. I have never been afraid of having epilepsy except when I first had it and no one knew what was going on. I'm a grown woman and amnow living in fear everyday because of that incident!

this happened to me only once before and it was when I was in high school and was at a dance. i had a two hour long seizure that night and didn't know at the time how dangerous this can be. i wish i still didn't know. but I do know that people can die from this happening and i was lucky to be with friends at the time it happened. if I had been home alone i am afraid of what might have happened. sigh. the last neurologists were complete jerks treating me like I was faking or something. It's been one heck of a journey!

Sara