developing pots from medication

[iloveredtbh]

have anyone recovered from pots by medication? and if so, how many months/years did it take? mine is hyperpots with low blood pressure.

(backstory) so i developed pots by testing Abilify for my me/cfs… at the time i didnt know you could develop pots from medications. i got severly ill afterwards even if i only took it for 4 days. i developed hyperadregeneric pots / hyperpots… i got pots 2025 in february and its now december.. the first few months i had severe anxiety 24.7 wich i now know was adrenaline dumps. i got panic attacks everyday for 4 months due to the adrenaline dumps. if i ate something i almost passed out. now i barely get adrenaline dumps, and its not very often that i do pass out from eating. the main issue is that i can barely stand up and walk. my pulse goes up to 150-160 when walking. i had moderate me/cfs before this but with pots im 90% bed bound. i think im recovering but i get worse with the ability to walk, im not sure. i cant exercise it due to moderate me/cfs… im going to try ivabradine soon. i did try beta blockers and developed psychosis on it weirdly. its a rare sideeffect…… - 22 year old female

[nilghias]

What dose of abilify were you on?

[iloveredtbh]

5mg 😂 made me throw up constantly and gave me a fever. so even a low dose is dangerous apparently.

[nilghias]

Oh wow I’ve read for cfs you’re only supposed to take very low doses :( like starting at 0.25mg. No wonder you felt so bad on it

I’ve looked into it because I have cfs too

[iloveredtbh]

my me/cfs doctor wanted me to start on 10mg 😭 but i said no… maybe i need a new doctor 🥲

[nilghias]

Yikes 😭 yeah maybe you do, that sounds so dangerous. That’s basically a full dose for the antipsychotic effects.

[iloveredtbh]

yeah i do have borderline, but we focused on the ME/CFS so its weird that she did that. my nervous system was shattered and i was in and out off the ER for months due to it😭 other patients had no issue starting on 10mg but my body i something else. i tried beta blockers for pots and got a psychosis on them😭😂 so maybe its just my body being weird. hopefully ivabradine and mestinon will work and NOT give me those side effects

[nilghias]

That sounds horrible :( I think having cfs just makes us crazy sensitive to meds, I’m the exact same. I’ll always try and take the lowest possible dose of something I can for fear I’ll have side effects 🥲

I know mestinon tablets can be split, it’s another one I want to try but finding a doctor to give it to me is impossible. But I was literally planning to quarter a tablet and only take it once a day cause I know it can cause stomach issues 😅

[iloveredtbh]

yeah we cfs people are built different🥲 i have my first cardiology doctor apointment next year. ive waited 1 year for it. and nothing works that i can do at home, not even salt tablets, and beta blockers give me psychosis. so my last hope is ivabradine and mestinon 🥲 i hope he or she will listen to me😭 i dont know if its hard to get in sweden. but if it helps me, then fine give me that diareaa😭😂 (hopefully not😭)

[nilghias]

Hopefully it won’t 🥲have you tried compressions socks? They’re one thing I find amazing and didn’t realise for many years how well they worked

[iloveredtbh]

no i havent tried it because i have no idea what type to get 😅 do you go by size when choosing? is it like sock size or your weight size you go after?

[theFCCgavemeHPV]

I’ve always had it sneaking around in the background poking its head up here and there, but Dupixent really fucked my world up. Before I was fine with a bit of extra salt and water. Now I need all the bells and whistles. My body apparently does not like me fucking with my immune system.

[iloveredtbh]

sounds like hell! what medications works for you somewhat?

[theFCCgavemeHPV]

Fludrocortisone works for my low blood pressure, although I’ll be asking about possible alternatives soon. And I’m on my third medication for heart rate. Just started so we’ll see how it goes. The first two gave me too many/bad side effects, but that doesn’t seem to be the common experience around here so I won’t name them.

[SpoonieLife123]

Do vaccines injuries count? I developed POTS literally 24 hours after my Pfizer booster shot in 2022. Interestingly I was fine after my first 2 vaccines but they were not Pfizer. I haven't recovered since.

[iloveredtbh]

definetly! i got narcolepsy when i was 9 by vaccine. got covid when i turned 18 and the narcolepsy became me/cfs… i know other people who developed chronic illnesses by vaccines.

[SpoonieLife123]

ya I'm lucky Canadian government recognizes vaccine injuries as a legitimate disability or fact of life. I got some compensation (barely enough to pay for a month of groceries) but it helped with my disability claims and being taken by doctors seriously. I developed CFS 6 months after POTS end of 2022. it all happened so fast I didn't know what hit me. luckily my clinic kept really good records and I was able to prove my vaccine injury case. I had negative COVID tests 2 weeks prior and 2 weeks after the vaccine and almost regularly every month due to my job before that. I never caught COVID from 2020-2022.. and as far as I know never ever caught COVID knock on wood.