Hi, all! I am new to the forum, but not to epilepsy. I had my first grand mal seizure when I was 4 years old. I took phenobarbital until the age of 14- I wanted to get my drivers license, and I was seizure free for a year, but that is when the problems started. I began having trouble getting out of bed, I was dizzy, and started having bouts of IBS. I managed pretty well until the age of 22 , when I was in college, I was hospitalized with strep septicemia. It took a year of strange symptoms and constant headaches before I became a functional person again. During that time I saw several neurologists for the headaches and dizzyness, I even had another EEG( it was normal). From the age of 23 until my current age I have had symptoms of Dysautonomia that was wrongly diagnosed as POTS. I finally reached the end of my rope several months ago, and saw another neurologist. I had a battery of tests, they were all normal, but the doctor felt confident that because I had abnormal EEGs in the past, they just hadn't caught anything at that particular time. He started me on lamictal, if I felt better, then I can assume I have autonomic epilepsy. Well, the day I started the lamictal, I felt the best I have felt since the age of 14. There was an almost complete elimination of all of my symptoms. Unfortunately, I got the lamictal rash, but I am so relieved that there is hope of feeling better. I know what's wrong, I am not crazy, or overly dramatic, or weak. I have epilepsy and there are things that can be done.
New to this, but not to epilepsy
- Thread starter Fifi
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Hi Fifi, welcome!
For some folks who get the rash, it's still possible to try again with the Lamictal -- but you have to ramp up very slowly on tiny doses (along the lines of 12mg at a time (a 25mg pill sliced in half), every two weeks). Ask your neuro about that option. If you're sensitive to the meds, it's worth going on a "low-and-slow" ramp-up schedule for any med you try. Good luck! It's nice that you're on the right path finally.
Best,
Nakamova
For some folks who get the rash, it's still possible to try again with the Lamictal -- but you have to ramp up very slowly on tiny doses (along the lines of 12mg at a time (a 25mg pill sliced in half), every two weeks). Ask your neuro about that option. If you're sensitive to the meds, it's worth going on a "low-and-slow" ramp-up schedule for any med you try. Good luck! It's nice that you're on the right path finally.
Best,
Nakamova