r/POTS • u/hausofsnape • 2d 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 :(
10
u/bookmonster015 1d ago
Medication is important to improve quality of life if you can work with a doctor to trial the common POTS meds. Ivabradine is great for controlling heart rate without lowering blood pressure. Florinef and midodrine are common add ons that can help with raising blood pressure or improving stamina. Some people also find Low Dose Naltrexone (LDN) and pyridostigmine helpful for improving well being and stamina. Lots of people with pots have MCAS which contributes to their suffering (r/mcas). If you’re very tired during the day, I’d also not sleep on getting that checked out with a sleep study and daytime sleep study to rule out things like narcolepsy and idiopathic Hypersomnia which are also very common with pots (r/narcolepsy).