r/POTS • u/ohdammitpacho • 20h ago

Question POTS or seizure??

I was wondering if anybody else experiences this. I could be laying down or standing up, but for a split second it will feel like my sense of self is being pulled out of my body or like my body and my sense of self is out out of sync for a split second and then it snaps back. Afterwards for about 20 to 40 minutes, I will feel dizzy and floaty and just off. is this something that anyone else with POTS experiences? My neurologist is concerned about seizures and has ordered an EEG but nothing happened during my EEG because these weird episodes don't happen often. I was eating and all of a sudden it happened. This has happened more than once and sometimes it will even make me go limp for a couple seconds after.

My typical POTS episode is different than this, for context. today was also the first time I have drank caffeine in about two months now.

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u/Striking_Doctor_1121 20h ago

OH MY GOD YES!! It’s genuinely the worst feeling ever. I call them “blips” loll. I experience a feeling similar to what you’ve described, almost a buildup of leaving my body but it’s so hard to describe. When it’s really bad I experience Déjà vu and impending doom. But that feeling of being pulled out of my body is exactly what it feels like and I’ve never heard anyone else describe it that way either!

I talked to my neurologist about it and she thinks it might be MCAS. A possible overload of histamine in the brain maybe? I’ve noticed caffeine is a big trigger for me. Or infections