Epilepsy & Seizures Support Group

Oh my God! I am the same way. Mine came along when I was about 12 or 13. I'm now 29. Mine are also caused by stress and lack of sleep. I jerk, stutter and fall, but I'm unconcious. I have fallen down stairs, fallen on my face near a bonfire on a huge rock that scraped my face (luckily I missed the fire.) People have also thought I am crazy. I've also fallen and had to get 17 stitches in my face from my seizures. I've been on so many meds I can't count them. Don't feel alone in this. There are tons of people out there like us.

I also have the same type of seizures that you have. Mine always happen right after I wake up, only if I have been under a lot of stress and usually after my menstrual cycle. I was diagnosed the same year I started having my period. I am 40 years old and on Monday I had a tonic clonic seizure . I had kept the secret from my co-workers and friends. It was horrible, no one knew that I had a history. I was in the car driving and could have killed my children or someone else. My memory has been awful this week. I won't be able to drive for a long time, and I can't get in to see my neurologist until July. I just feel like my life is crumbling. I am feeling really sorry for myself.

My daughter started at this age. She is 13 1/2. She hasn't had a sz since Aug 07. She is doing pretty good. She is on 3 types of meds.
She is finally doing okay. It took a long time for us to come up with the right meds.
How often do you have your szs? did you go through highschool like this? I guess since we are doing so well, should I expect this for the rest of her life?
Thanks!
Mindy

Yay I am glad that I found some like me even though it is a sad situation to share. I never have been able to find anyone like me as most people have full seizures and not the clonic seizures, I know I have one of you added as a friend but I will add the rest of you so that we can all talk more!!
Daniella

I got diagnosed with juvenile myoclonic epilepsy when I was 23 (I'm 30 now). I was initially misdiagnosed with complex partial seizures. I was on various combinations of meds to include Depakote, Neurontin, Klonopin, Dilantin, and Tegretol. At one point I was on Dilantin and Tegretol at the same time. A couple of weeks after that started I had a 1/2 hour grand mal seizure. My seizures had not improved at all in 6 months so I decided to get a 2nd opinion at an Epilepsy Center (Rush in Chicago). It took the doctor literally 10 minutes to tell me that I didn't have complex partial, but rather juvenile myoclonic seizures. She said there are 2 medications that cause juvenile myoclonic seizures - Dilantin and Tegretol. So, I was slowly switched to Lamictal and have been seizure free for about 5.5 years now. I can tell that if I'm over-tired or really stressed that I feel really vulnerable to a seizure. So, I have to be really careful and get a lot of sleep. So, you're not alone. The one thing that sucks, though, which this type of seizure is that I was told I had to be on meds for the rest of my life. But, luckily my med doesn't really have any noticeable side effects. Hope this helps.

Thanks for all your input!!

I'm glad to see that I'm not the only one out there. Just like pianoplayer, I am also on Lamictal. I was on ever med on the list. Luckily my falling has'nt caused me any harm yet but when in public it is embarresing cause nobody knows whats going on. I am currently on 5 different meds and take 17 pills a day and still have seizures everyday. Just hang in there until the docs find the right meds for you.