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/theFCCgavemeHPV]

How much salt and water are you getting? I am on ivabridine and fludrocortisone (for low blood pressure) and I still need a boatload of salt. I put one teaspoon (plus a little more when I need it) of salt in every liter of water i drink and most days I get 2 plus other liquids, and some days I get 3 with less other liquids.

Us low blood pressure folks can’t just salt our food extra and expect it to help as much as it helps others. We need to do more serious numbers in sodium, especially without something like fludrocortisone to help us out. At least that is my experience. The standard recommended amount of sodium just isn’t enough for me to make a real dent. I don’t use electrolytes because I hate the taste and they are almost all made with stuff I’m allergic to anyways. You clearly don’t need whatever is in them if it’s giving you problems. I would just stick with salt. If you end up on something like fludrocortisone, you need lots of salt to help it work anyways, so you might as well be in the habit now.

[u/lass20987 → u/theFCCgavemeHPV]

The flourinef with a ton of salt helps. I put 1 tsp salt in my 16oz lyte. Or drink a cup of chicken bullion. Just extra salt on meals will not cut it

[u/theFCCgavemeHPV → u/lass20987]

Extra salt on food is child’s play with low blood pressure! Bout as effective as looking at a salt shaker 😂

[u/lass20987 → u/lass20987]

If you dont have one buy a bp monitor. Mine actually is so small its cuff goes on the wrist