u/CatimationB

I recently had an unexplained neurological event that I still don’t fully understand. I’ve already seen a neurologist, but I’m struggling with the uncertainty and wanted to ask whether anyone here has experienced something similar.

The last thing I remember is sitting at the kitchen island finishing breakfast. I turned to the right and was thinking about getting up. After that, I remember nothing directly. My mom lives with me and she tells me I seemed to freeze in place, my head slumped to the left, my eyes were half open, and I was drooling. She says this lasted around 60 seconds. Afterward, she was eventually able to get me to respond and stand up, but apparently I just kept repeating the word “sick”. She got me to the couch and called 911.

What’s strange is that I apparently continued responding to people afterward, but I have almost no memory of it. I have tiny blips of awareness, like briefly hearing EMTs ask if I was okay and hearing myself say “I’m fine,” but it almost felt like I was watching myself from far away rather than fully conscious. I was also extremely nauseated.

Apparently I continued answering questions, but I don’t remember any of it. My next clearer memory is being in the ambulance, then scattered moments in the ER like hearing a doctor mention blood tests. My sister later told me that one of the first things I said to her was that I thought I had been biting my cheek because it felt raw and painful.

I didn’t really start forming continuous memories again until I was sitting in the ER waiting room, probably around 2–2.5 hours later. The weirdest part to me is that I was apparently talking and responding the whole time despite barely remembering any of it.

I did see a neurologist afterward, but she couldn’t give me a clear explanation. I have POTS, but I've never had syncope and the lightheadedness associated with it have never felt anything like this. I asked about a seizure, but it didn't seem to be her main concern. (EKG, CT and bloodwork all came back fine). At first that reassured me, but the more time I’ve had to reflect on the event, the more I feel seizure seems plausible, especially because I was extremely sleep deprived beforehand (about 4–5 nights of only sleeping 2–3 hours).

I'm now trying to get an appointment with an epilepsy specialist, although I’m worried it may take awhile. In the meantime, I am getting an EEG along with additional testing for possible cardiac causes as well.

I’m mostly looking for answers and wondering whether anyone here has experienced anything similar. I’ve also read very conflicting information online. Some places say many people can have a single seizure that never happens again, while other sources suggest seizures occurring shortly after waking can have a higher recurrence risk.

Has anyone experienced a first-time event like this in adulthood? I'm 41, so it seems awfully late in life to develop something like this. And if it did turn out to be a seizure, were you told anything about recurrence risk after a sleep deprivation-triggered event?

Thanks so much in advance for your consideration and insights!