I found this website the other night. I'm so glad to find some answers to a few of my questions and also to be able to communicate with people that are experiencing the same things I am.

JME started for me when I was 15. I'm now 55. I have seen at least a dozen neurologists if not more. Each has had an educated guess on how to treat me. Some doctors have been eager to try and find an answer others egotistical and just collecting a check.  I've been on lamictal for about 5 years, 300 to 350mg until just recently. I moved to a new city and had to find a new neurologist and since my insurance doesn't cover pre-existing conditions for another few months I had to find one that would accept cash. Easy? No. Number 6 finally said cash was ok.

I've been on lamictal for five years, 300 to 350mg until the last couple of months when my current neurologist increased my dosage to 400mg. I had been getting slight tremors prior to my last visit but once the dosage was increased the tremors increased considerably. My right hand would shake so hard I would try to stop it by grabbing my wrist but it wouldn't stop. The intern at my last visit told me to watch the tremors but no one said why. I had no idea that the lamictal could be causing it let alone that I would be reaching a toxic level. In the 40 years of this I have never had one doctor or medical person mention anything to me about that.

My JME was getting worse with the tremors on top of it. I found when the jerks started getting bad taking 5mg of valium made them stop, I did that on 4 different mornings. I DO NOT RECOMMEND this to anyone. So, I quit taking the lamictal. Stupid I know, great way to have a grand mal seizure. I was groggy for about a week, like a hangover. I had a couple of mornings with a "bump" or two but so far I've been doing good. 

I called my doctor twice in the last couple of weeks voicing my concerns. The other day his nurse finally called me and told me that she would relay my information to the doctor. I haven't heard from anyone since. Maybe I found another one of those neurological deities. I will pay close attention to the signs my body gives me. I'll work hard at taking care of myself. I do know that stress and anxiety are the catalysts for my seizures. I just can't afford to pay $300 for an office visit to a neurologist that doesn't seem to communicate well and I just can't afford $400 a month for medicine that is making me worse.