I'm late to this thread, but these "episodes" are nothing new for me. I started having them when I was a pre-teen about once a month for maybe six to eight months some forty years ago. Nearly three years ago they resurfaced. I was in the checkout line at the grocer and I was like "Oh WOW, one of those deja-vu thingies I used to have as a kid!, Cool!" I had one a month for about a year until they turned into clusters of 15 a day. That turned into 16 the 1st day, 15 the 2nd day, 3 on the 3rd day - I went to my primary care doc armed with a bunch of google hits that looked like Temporal Lobe Epilepsy. Primary Care Doc had never heard of it, I'd videoed some of my "seizures" and he said they were panic attacks. I've got a Master's Degree, so I'm not an id**t, My husband who's in the room with me is a Ph.D. - we push back and ask "How am I having monthly panic attacks that onset like deja-vu/jamais vu that last for 90+ seconds regularly. That wakes me up outta a dead sleep and continue all day in clusters very similar to TLE?" The man was a m***n! And especially when they deescalate as fast as they start with all the other symptoms associated with it that all of us here have described. Eventually, I go to a neurologist - MRI, EEGx2, Keppra (can't tolerate that), Topiramate - increase dose from 50mg to 300mg - still seizing on a 3 to 5 week schedule but no more "fun" elation or can't quite grasp the deja vu part and seizures only last 10-15 seconds instead of 90 seconds. I go from having like 30 over three days to 11-15 over two. A metric-sh*t-ton of side effects from the anticonvulsants. Neuro puts me on an additional anticonvulsant Oxstellar ER. Also on antidepressants, antianxiety, and medical mj. Have an ambulatory EEG - finally gonna capture some of these "seizures" right? WRONG! I reduced my dosage of Topiramate and felt like I'd seized 19 times while hooked up to EEG over the weekend. ZERO captured. Why? Either they aren't "real" seizures, they're too deep in the brain for the surface wires of the EEG to capture. Or "other"...
Now the recovery period after seizing is the worst. Three days of complete "vulnerability" as my husband refers to it. I feel like I'm a worthless, pathetic loser, cry if you look at me funny. Cry even if you don't. I don't remember having this torn-down, vulnerability recovery stage after episodes before Topiramate. I've asked neurologist if I can wean myself off (it's a 6-8 week process with this drug). He says "NO". Keep taking it - says "episodes" could be migraine auras. He's guessing at this point. He's never had a patient with these same symptoms (monthly, hormonally influenced perhaps, deja vu/jamais vu spells). I have an appointment with a neuro at our state university hospital end of next month.
Just finding this thread has made me feel less crazy. I'm considering dropping antidepressants as well as asking new neuro about discontinuing other meds and experimenting with psychedelics such as guided ayahuasca ceremony. At this point, the cure is worse than the affliction.