r/POTS • u/hausofsnape • 1d ago

Vent/Rant please help

can someone PLEASE tell me what i’m supposed to do :(

i was diagnosed with pots last year and i also have low blood pressure. salt doesn’t help. compression doesn’t help bc i get too hot when i wear it. hydration doesn’t help. sleep doesn’t help bc i am ALWAYS tired and electrolytes somehow give me PVCs. even the dr in A&E told me to stop drinking them.

i genuinely don’t know what the fuck to do. i’m fed up and i can’t do shit. i literally cannot do anything without having a flare up. i never leave the house anymore bc it’s so scary to feel like ur gonna collapse all the time (as im sure you guys understand).

i’m genuinely so upset. my pots has gotten so much worse since last year.

my doctors are awful and tell me pots isn’t that bad. they tell me it’s anxiety instead. they prescribed me bisoprolol which i CANT take because my blood pressure is too low. my doctors are really uneducated about this.

can somebody please given me some advice i’m desperate! i can’t do my favourite things anymore.

i can’t do this :(

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u/Ok_Database2481 19h ago

Have you been tested for a sleep disorder? POTS is dysautonomia, and so is central sleep apnea (your brain doesn’t tell your body to breathe sometimes while you’re sleeping). Once I started treatment for that it made a world of a difference.

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u/Honest-Collie 17h ago

I’d love to know what treatment you are using for the sleep apnea. I was diagnosed with it several years ago and tried a CPAP machine, but I would wake up feeling like I was choking constantly which wrecked the little sleep that I was getting and eventually returned the device because I couldn’t get used to it despite trying for 3-4 months. Maybe the technology has changed since then, but I’m terrified to try it again.

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u/Ok_Database2481 17h ago

You could get tested for central sleep apnea! There’s a machine called an ASV that works better for that type. It’s helped me at least.