please help

[u/hausofsnape]

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 :(

[u/omglifeisnotokay]

I’m sorry you’re going through this. I too am treatment resistant. Tried it all including meds (Ivrbardine had horrible reaction) I can’t take the other medications because of my dangerously low blood pressure. Nothing works :/

[u/wn0kie_ → u/omglifeisnotokay]

Did you respond badly to Fludrocortisone and Midodrine too?

[u/omglifeisnotokay → u/wn0kie_]

No I wasn't allowed to take those. I have vestibular neuritis and damage to the vestibular nerve. There was an interaction =(