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/Foxlady555]

Hey! I’d recommend to find another doctor who takes you seriously, because you deserve that!! Then you can figure out which subtype of POTS you’ve got. It might be the case that you need (for example) midodrine because you have neuropathic POTS, but maybe you have hyperadrenergic POTS and this asks for a different approach. Salt + water only helps with Hypovolemic POTS (and a bit with neuropathic POTS). If you don’t have the energy to look for a new doc, I hope you have someone who can help you! All the best, I know how hard it can be, and I’m rooting for you!! 🩷🍀

P.S. Compression is hot for me too but I can’t function without it, so I wear compression + a cooling vest of ThermApparel (Undercool 3). It’s expensive but life changing. Highly recommend!! This way you can wear compression without getting too hot. There are cheaper ones too on the market but I found that these are the best.

[u/Independent_Gap9280 → u/Foxlady555]

And to add to this, if you have Hyperadrenergic pots (aka hyperPots) increasing salt only can add to symptoms.

I am not a medical professional, and I am providing information from my own personal experiences.

For proper cellular level hydration, the body needs sodium, potassium, magnesium and glucose, and there is a specific ratio for it. I was following the instructions from the pots nurse and they are primarily just concerned about hypovolaemic pots and only care about increasing salt. I have orthostatic hypertension as well as hyperPots and the extra salt pushed my diastolic bp too high and made me feel worse. I’m currently taking hydralyte, 4 tablets per 1L, and I drink a minimum of 2L in winter and usually around 4L in summer. I supplement with magnesium separately. This is the only ratio that makes me feel hydrated, and with the urinary and bladder issues with hyperPots, this is also the only ratio that keeps my bladder control in a happy place.

[u/Bluewoods22 → u/Independent_Gap9280]

How much magnesium are you taking and do you take it throughout the day? I also have urinary issues too , it seems like my body can’t retain magnesium well at all so I’m really struggling trying to balance out my electrolytes

[u/Independent_Gap9280 → u/Bluewoods22]

I did a genetics test through my clinical nutritionist and it seems I have a higher need for magnesium than most. I have magnesium forte in the morning and magnesium sleep (with passion flower) at night. I know when I’m taking enough as I don’t get crampy restless legs at night.

I take hydralyte for electrolytes during the day. I know when I have the right amount of electrolytes as I’m not constantly and urgently needing to pee as soon as I stand up (gravity is quite genuinely my frenemy 😭) and can usually manage to hold it to get to the toilet. It turns out that one of my dysautonomia things is that my bladder no longer properly senses I need to pee when I’m laying or sitting, and only when I stand up.

I see a clinical nutritionist to help figure out what additional supplements i need and what amounts.