I have JME too. I just had my first grand mal seizure last christmas- i’m 17. But i have been having petit mal seizures sinse i was twelve- those are when you space out and have these blank phases were you kinda go unconcious for a second. If this is what your talking about i can’t belive that your neurologist hasn’t talked to you about this or listened to you. Sounds like an ass. It was horrble when i first started having my petit mal’s i’d have them about a gazillion times a day. I felt so out of place. I became so depressed b/c of it. Petit mals- i think are so much more emotionally scarring than grand mals because its so much harder for people to understand. My dad used to yell at me saying that i just wasn’t paying attention. I got put on just about every medication for depression you can think on which actually lowered my seizure threshhold even more making me have even more petit mals. Actually when i had my grand mal- i was relieved. Because finally i had found the awnswer to all this. I’m almost gonna cry when i write this cause it changed my life. Now i rarely have petit mals and feel better than i have felt in a long time. Yeah epiepsy sucks. okay sorry for writing you a novel- this is my first entry and i have a little too much time on my hands… welp i hope you find a much better doctor and feel better about all this.

That was pretty much exactly my experience with epilepsy. I knew for a long time that there was something wrong with me. There were times in childhood where I started a sentence and then would just drop off in the middle of it, not remembering where I had started, all because I’d had an absence seizure in the middle of it. My family chalked it up to my being a daydreamer or having “selective hearing.” I was finally diagnosed with petit mal/absence seizures when I was 14 and then had a grand mal seizure about a year later. After that, nothing… until I hit age 17. My freshman and sophomore years in college were filled with seizures and then I went three years without… and then back into a bad period. My epilepsy has been all over the place, and I’ve been on a dozen different meds – right now I am on Keppra, Lamictal, and Depakote and while I’m not pleased about how much medication I’m on, I am psyched that I’m pretty much controlled. Hang in there. Oh, and find a neurologist who is willing to not just look at your chart, but also to TALK to you. Some just don’t.

I am 20 and I just had a seizure on Wednesday for the first time in my life. Can we talk? I really need to talk to someone who has done this before.

Email me: da_st00pid@yahoo.com if you are willing to answer some questions I have.