Hi Freespirited & Welcome.
I understand how you feel. I had epilepsy since I was a year old, although it went into remission while I was in school, only to start again with different types of seizures when I started college. I didn't even know I had epilepsy. My mother never told me about the childhood seizures until recently. Then 15 years ago I was seeing a neuro/psych for bipolar & I guess something I said to him made him decided to run an eeg. He told me I had a seizure disorder, but never explained it. He tried a number of meds, but I had bad reactions to most of them, or they simply didn't work. He ran 2 more EEG's over the next 12 years & they always showed active seizures. I had to change doctors, but since my 1st one didn't say anything about the seriousness of the seizures, I didn't think anymore about them. I lost my insurance for a while & weaned off my seizure med. Within a year, I started feeling like I was being shocked all over & when I would lay down at night, I would get very rigid & felt like my body would explode. My family doc thought it was muscle spasms, gave me relaxants that didn't work. About a year went by & more strange things started happening & she said she thought I was having seizures & sent me to a new neuro/psych. At first he didn't believe me, even when I told him my history, but another EEG confirmed very active seizure activity. He's spent the last 6 months trying to get me stablized with meds & I'm still having seizures. I'm currently taking Vimpat (which he just increased 3 weeks ago) & Valium. He put me on Klonopin, which I'd been on before, but had to stop, but I couldn't remember why. I ended up reacting to it in less than a week & it was stopped immediately.
Vimpat & Valium are the only AED's I've been able to tolerate, but they are not controlling the seizures. I have 5 types of seizures. Thankfully I don't have grand mal any more - I did as a child - but I also realize that uncontrolled seizures could progress to that again. We have not discussed surgery. A Vegus Nerve Stimulator might work for some of my seizures, but I don't know. Brain surgery is definately out since my different types of seizures affect most brain areas. But, like I said, we haven't even discussed any of that. I do know my doc is frustrated with my med problems, but he's trying what he can.
Just don't give up hope. New meds are always coming out. I understand that hopelessness - I feel that way often. But we can't give up. When you start feeling hopeless & helpless & useless, come here. It's a great place for support. And maybe the video eeg will reveal something that will help your doctor in treating you. BTW, how long have you had epilepsy? Hang in there.
Shelia
