Hi everyone! After practically a lifetime of seizures, it's nice to find a group like this! My seizures probably started when I was young, and then @ around 30 I had the first of several gran mal seizures. The reason I say "probably" is that I always thought everyone felt those weird, "deja vu", moments of blankness type feelings. I was put on Dilantin, which controlled everything. "Fast forward" to this past year (20+ years later) and my neurologist explained that being on Dilantin for so long is not healthy and could cause irreversible neurological and liver damage. So, he switched me to Tegretol (the switch was NOT fun – I felt SO awful – sluggish, depressed, anxious, etc – while having to titrate off Dilantin and onto the Tegretol!!!). I've now been Dilantin-free for about a year, and I'm doing fine. I feel different than when taking the Dilantin, but I'm seizure-free.
A bit over a year ago, my now 15 year old daughter was diagnosed with anxiety-induced Absence seizures. We're having SO many issues trying to find a medication that controls her seizures without causing her extreme depression. She's been on Zonegran, Zarontin, Keppra (which caused her so much depression she couldn't even get out of bed!) and is just now switching from Aptiom to Fycompa (again because of depression). We're not going to even try Lamictal because several family members have had allergic reactions (bad rash, etc). She's also just started on birth control because I've noticed her seizures are worse just before her period. My daughter is taking online school because the anxiety of going to classes (and the loudness/activity of a high school is SO overstimulating) triggers multiple seizures. She LOVES school, so this is hard for her. I'm just not sure what to do next for her…Praying that the Fycompa and birth control will help without the awful side effects. Doctor doesn't want to put her on Tegretol since she's not having gran mal seizures.