I also had complex partial seizures starting at age 22. I am 62 now. After a few years, they were mostly controlled by Tegretol. I had some EEGs in the 1980’s and maybe one in 1990’s - I don’t remember. But they were all normal. I chose to come off Tegretol during both my pregnancies (1992 and 95) and had seizures. I remember telling my husband “ don’t ever let me do this again”. It was frightening when I had the strong auras and actual seizures.
My last seizure was at least 19 years ago, and it would have been during the night - I could tell the next morning when this happened, because I could remember it, and woke groggy with a headache. I was in my 40’s.
I stopped Tegretol in 2014, since my last seizure was remote. Within 6 months I developed a new problem, which turned out to be small fiber neuropathy.
Back on Tegretol a year ago, for neuropathy pain. Now I am having a focal type seizure almost daily, and it is always 2 hours after I get up. The seizure is brief, but the post-ictal phase lasts for a few hours - dizziness, double vision. When I give in and lie down, I have random twitching until I finally relax and kind of doze. I have to lie down for about an hour, or I am still a little dizzy, and very sleepy.
We recently tried Keppra, then Topamax, but I couldn’t tolerate the side effects, and kept having seizures. This was a very dark time for me, as my life narrowed down to spending hours with seizure symptoms, and yukky sided effects.
I consented to 50 hours of ambulatory video EEG in my home. This was horrible for me, in part because of my SFN pain and symptoms. But I did have a focal type seizure on day two, and dutifully sat in front of the camera.
No epileptic seizure activity was recorded on my EEG, so I have “kind of” been diagnosed with PNES. I guess not completely, since I don’t have grand mal activity, and don’t have a history of suppressed trauma, but at this point the neurologist doesn’t think I have epileptic seizures.
Just posting this long story in case it seems familiar to another seizure patient.