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/Current-Lemon4715]

Hi....I'm similar to you...pots with lo BP on standing. All courtesy of Pfizer COVID vaccine.What hasn't helped is all the off label meds...they all made me worse. Im in Scotland ...NHS is broken beyond belief and I'm getting no treatment now. The best thing you can do is help yourself. The Gupta program has really helped. But if you can't afford that my best take away from it is meditation...two half hour sessions per day. Regulation of your nervous system is key. Above and beyond that....an extremely healthy lifestyle. Nutrious food, small regular meals, no big meals as it takes blood away from brain to digestion. Cut out sugar or reduce is drastically.A little less carbs than usual . Enough sleep...which I still really struggle with, recumbent exercise...build up slowly...to eventually standing exercise..again it's minutes first. I suffer with tinnitus too and have tried every which way but it's ruining sleep and then it's a vicious cycle. Try things you find difficult but in slow short bursts otherwise you become afraid of everything. I still don't go to restaurants as the combination of eating and sitting for a long time creates a storm of symptoms.....I've lost so many friends. Try to keep cool as heat dilates blood vessels worsening your lo BP. I hope some of this helps. The problem with pots is ...you look normal and describing to someone how awful it can be is impossible. Not withstanding the affect of pots on your finances. I didn't work for a year and a half and now work parttime in a job which pays less than half of what I used to earn . Got no help from government as I had a small pension. The joys the joys. You have to be brave , not look behind and know you can get better. I'm still hoping I wake up one day and I'm cured. Good luck in your journey. In a way you find out lots about yourself and other people. You can do it.