Hey All–

I know normally I use this platform to post my art, but I could actually use your help today.

It’s very rare, less than once a year, but for the past 18 years I’ve been getting these “episodes” where I go unconscious. It’s pretty terrifying, and I’ve had a hard time finding a specialist who actually cares–they can’t really demonstrably say what it is unless they can replicate it, and they honestly don’t seem too worried. I think they’re busy with people whose problems are much more serious. So far the doctor guesses are seizure, an acute migraine attack, or vasovagal syncope–a fancy word for fainting.

So I’m just wondering if there are people out there who have experience with this and have any insight, because I dunno, maybe the hive mind of the Internet could help me kind of figure out where to go next with this.

Here’s what happens…

It’s normally triggered by nausea or dizziness, and panic. I feel sick, have plenty of time to lie down, but get that extreme dizziness and discomfort you get before throwing up, and if I can’t calm myself down, I’ll feel myself falling and go unconscious. I know when it’s coming and can warn people if they’re around me.

While I’m under, I’ve been told that I tend to have my eyes open, looking straight out (or apparently rolled back–this is a new thing). I’ll be pale, and there’s a clear change in how I seem. My body used to go limp but I think that might have changed…I don’t think I shake, though. For the past 5 or 10 years I’ve started yelling short phrases and repeating them almost robotically–“I CAN’T HEAR MYSELF THINK” or “DON’T TOUCH ME” or “OH MY GOSH” (yeah I guess my subconscious keeps it PG). I’m usually out for about a minute. Pretty much everyone who’s seen it has the uneducated guess that it’s a seizure, and that’s what I tend to call them when I’m lazy.

I gain consciousness bit by bit…it feels like I’m a computer rebooting. The first thing that happens is I hear this cicada-like electronic buzzing in my ear. That tells me I’ve had an episode. It feels like I’ve had a horrible dream but I can’t remember what it is. Slowly I can hear people around me but I’m very overwhelmed and sick and unable to see or speak or move. Eventually I can speak and tell people I’m okay. Then I can see. Soon the buzzing subsides.

I’m left feeling very weak, dizzy, and sick to my stomach. Occasionally I’ll throw up. I pretty much have to take it easy and lie down for the rest of the day.

If I’m lucky, this happens at home while I’m lying on the bathroom floor. Twice I’ve been flying alone on a plane, feeling sick from the motion. Just this last Sunday I was on a train and felt sick again, and it triggered an episode. Once it happened while I was dizzy from getting a breast biopsy (don’t worry, it was benign). It happens more frequently when I am under-rested, and I can’t take birth control pills or it’s just OUTTA control.

I am able to avoid these episodes, and usually, I succeed. I have to stay calm and, literally, cool. It’s not easy to stay calm when I know I could have an episode, but through the years I’ve gotten better at it. It’s much harder to calm down when I’m in a public place…especially when I feel like I need to lie down.

But for the most part, I live life as a normal human and I forget this scary thing can happen to me.

CAT scan, EEG, and MRI have all been normal. I used to hallucinate when I had fevers as a kid; not sure if that’s related. I’m a lefty and was a lefty before babies normally have a preference. Random, again, but maybe related?

What I ask of you: Please share! Maybe someone knows something. Keep in mind that if you don’t know and you’re making guesses…I appreciate the sentiment, but it only clogs up the information I’m searching for. Sharing is always helpful!

Thank you!!

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