I've had TLE since I was 3, but never properly diagnosed 'til 13 and only put on medicine regularly since I was 21, over 30 years.
It never really bothered me; I knew when a seizure was coming and could make adjustments. I had partial seizures, where I'd space out, mostly during "that time of month" and grand mal ONLY after periods of great difficulty...terrible stress and/or sleep deprivation.
Keppra was wonderful for me. First time in my life the top part of my head didn't feel in space. I lived in NYC, so didn't worry about
driving; walked, took subway. Never had anything injure me. Very independent: graduated magna cum laude, went on to become a medical writer!
In 2010 all changed. I love to cook and never had problems. Apparently passed out over a griddle and severely (3rd degree) burned hand. One finger partally amputated, chronic pain, hand crippled. And now I'm constantly having small seizures w/o warning. For first time in my life, I'm afraid...and I hate it.
I'm afraid to cook anymore; my husband tells me I passed out in kitchen again, but he was there to catch me. But what if he weren't there, or I fell face first into the cacciatore I was making? Am I supposed to live on frozen foods when he's not home--which is almost every night?
walking, or traveling alone? I worried about
these things happening when I was elderly. I'm in my 50s, but don't think I'm dead yet.
Doctors have fiddled w/my meds all my life. Every time they adjust I tend to have more seizures, at least initially. That's how the hand accident happened. Doc's prescribed gaba to add to my Keppra; thinks maybe it will prevent breakthroughs, but mostly for chronic pain of hand.
Never been afraid before. Appreciate advice, handholding, encouragement, ideas for independence. Thanks!