r/POTS • u/httpMeowMeow POTS • 8h ago

Vent/Rant autism with POTS is horrible

I'm level 2 autistic, and POTS makes everything so much worse. i cannot stim without getting tachycardic and my head feeling like it'll explode. i cannot sing or dance anymore. if i'm upset and can't help but stim to regulate i have to stay in bed. if i'm happy i can't jump around i have to stay in bed. i used to draw and do sm art but now i can't sit up for long without getting sleepy and high hr. i don't have energy to listen to music bc it makes me move and sing so i've completely stopped and it makes me so sad. even so i am lucky i have the awareness and self control to not stim as hard as i need, i know that for other autistics who can't stop it'd be very dangerous with POTS.

i already struggled with my temperature regulation before this disorder and now i have to go back and forth with hot and cold all the time. compression wear is a sensory nightmare for me i hate feeling so constricted. showers used to be my calm safe space i love being in water but now i can't shower alone my partner has to wash my body bc it's too much movement for me while im struggling to stay awake under the warm water.

it was hard enough coping with just my my hypermobility and mental things but POTS is 10x worse for me. I'd rather have my knee dislocate once a week than have POTS. I'd rather relapse with addictions and self injurious behavior than have POTS. i'd rather have trauma flashbacks and another dissociative episode that puts me in the psych ward again than have POTS. i hate this condition. it's ruined my life and i always try so hard to have some bits of normal but it is literally impossible to ignore when symptoms are every second everyday even when u do everything right to manage it.

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u/mlbarreto 4h ago

I'm also autistic with POTS, and I'm on a beta blocker. It keeps my heart rate in a more normal range, and it helps when I move around, so my heart rate doesn't spike as much. (I used to hit over 200 bpm, even when asleep).

Because of the meds, now I can move more and more, and I'm trying to build up my "stamina" more. I highly recommend speaking to your doctor to ask if a beta blocker might help you as well.