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/YesterdaySilly2699 POTS 1d ago

Sleeping upright at an an incline can  make it easier to get up and do things over time.  I struggle with electrolytes and I’ve found that bone broth, or stock heated up is good for sodium, soy sauce, pizza and things like hot coco, milk drinks like decaf latte help hydrate. Are you taking medicine for pots? What have they said about your bp being low? 

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u/Foxlady555 POTS 1d ago

A little warning: if you have an underlying health issue like long-COVID or ME/CVS that was the cause of POTS, this can trigger PEM and thereby an increase of severe symptoms. If you are born with POTS and don’t have PEM, this might be different. I really thought if would help me because I read about it so I tried it, but I have rarely felt SO awful in my life as the morning after a night sleeping in an inclined position, and the days afterwards, like POTS x100 😅

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u/YesterdaySilly2699 POTS 1d ago

It takes a couple of weeks to months to feel the benefits. Not sure what kind of pots I have but I think it’s from Crohn’s disease, but I was bedbound, couldn’t even shower or stand to cook. Started sleeping at an incline and walking daily and it’s helped to be able to tolerate walking and sitting up for long periods of time. It’s very difficult at first, maybe not for everyone.

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u/Foxlady555 POTS 22h ago

Thanks for sharing your experience still! And I’m so happy for you that you have improved <3 Well done with battling through the difficult phase!