Hi Amy (and all),
I'm new to the forum too. I was diagnosed 32 years ago as a teenager, too. My doctors could never find anything wrong on my eeg's or cat's. I know what it's like to be on meds, off meds, on meds, off meds. Only when I say OFF meds, I mean nothing. My doctors took me off all AED's when my husband and I were trying to have a baby, and put me back on again after we decided to just go ahead and adopt. (No, it wasn't the meds messing me up, but familial history.
Once I was back on, I was on for another 8 years, till the family doc decided, in light of clean eeg's, that I didn't have ep, but I did have hypoglycemia (low blood sugar). Well, four weeks ago today, I was told it was most definitely epilepsy (simple/complex partial). (The reason that they thought was hypo was my automatism of going for food or drink -- but thirst/hunger may be triggers.) Hearing that hurt -- I couldn't drive anymore, and I got put on indefinite sick leave from my job. Amy, I can relate to your crying yourself to sleep. I keep wishing I'd never been taken off meds to begin with. I wouldn't have to get used to it all over again, and I'd probably be going to work on Monday.
Question for the group -- does tegretol mess with your sleep patterns? It's 4:20 am here, and I'm wide awake and have been for an hour. Two days ago, I slept for 10 hours straight.