r/POTS

So I just got diagnosed with POTS today. Mine is due to a COVID infection and I also have MCAS & possibly EDS. I was told to exercise but I’m kinda scared to in case I have ME/CFS too…

I was wondering what POTS fatigue feels like? For me, say I am walking, about 10 minutes in I’ll start to feel kinda feverish. The type of fatigue you feel when you’re about to get a cold. I don’t have any actual fever but my forehead feels warm.

Also happens after mental strain, like a phone call.

I don’t have any other symptoms like sore throat, pain ect. It just feels like I’m a bit run down.

I’m just wondering if this is common with POTS?

Also my POTS/fatigue came on 9 months after my initial COVID infection. Happened after I was in extreme pain from my period (I have adenomyosis) Fatigue wasn’t one of my symptoms before and I think I had mild POTS which got worse after this event. I suddenly had dizziness, heart palpitations, fatigue ect which lead me to get a POTS diagnosis.

Anyway would love any insight on what POTS fatigue should feel like.

I was diagnosed with pots september 2025, after having symptoms for 5+ years but getting really bad january 25. I danced 40 hours a week like usual from January until the end of march 2025, just feeling really faint and nauseous throughout but still succeeding and fine but tired afterwards.

Then in April I completely stopped dancing and could barely even walk out of the house without feeling so ill, which continued through the summer. I had to get a job during the summer and would stand 8 hours a day (it was in food service) and the rest of everyday for the whole summer laying down in my dark room, so ill and exhausted I couldn't even watch tv or read a book or listen to music. I felt like I had the flu for 5 months straight (even though i didnt because no one else around me ever got sick even though i was always with them, and also flu and covid tests came back negative each time), on top of being constantly exhausted, fainting, shaking, nauseous. I even started developing fevers every night (longest streak was 33 nightly fevers). I went to the doctor but they found nothing wrong in their tests so they said just take Tylenol for the fevers.

April to late september I didn't dance, it was the longest I had ever gone without dancing, and so I took an advanced ballet class during my fall quarter at university (twice a week for 2 hours each class) and felt so happy to be dancing but, without fail, a couple hours after each class I would feel SO SICK, get fevers or feel like I had a fever, nauseous, stomach problems, pure exhaustion, and it would continue on to the next day, and then would just et worse the next ballet class too. For 10 weeks I loved being able to go to class and I KNOW exercise is supposed to help pots, but I had to fight myself to get to class even though I love ballet because I felt THAT BAD.

Then winter break I couldn't do anything, and winter quarter I never went to a single class and just watched lectures online because I was so ill, only going to my play rehearsal at night but there was barely any dancing so it wasn't too bad. I went to new doctors like 20 times for all sorts of tests because I was still having fevers ALL THE TIME but they found nothing again so I have just given up on that.

I am so out of my normal shape, and my muscles are all atrophied, I was losing my mind just laying in bed all winter quarter, so now this Spring quarter which started two weeks ago I am doing another ballet class. It has been hard of course but my body keeps up the whole class, but again, a couple hours after class I feel like I have skin chills, nausea, fever, and bone exhaustion.

I don't know how to keep up, it feels like I just keep being able to do less and less. HOWWW do I keep exercising and not have this happen?? Is this normal for pots, do I just have to push through it like I've been doing or am I going about it all wrong. Do i have to start slower? My doctors know literally nothing and I dont want to damage my body, but I feel like if I'm gonna feel like crap I might as well feel like crap and dance, but now I feel like i can't do anything ever at all.

Idk if any of this makes sense, everything feels fuzzy and it is hard to put things to words, If you have any questions please ask. Any help or insight would be great because I feel so lost.

stats (?) if that is helpful:

21 female, on midodrine 2x daily, 6-12g salt daily, electrolytes in my water always, compression socks and tights, zofran as little as possible bc I have emetophobia but still probably twice a week because I am constantly nauseous 24/7

TLDR: on Tuesday had really weird episode of not being able to breathe, collapsed but still conscious, and became uncontrollably emotional. EMT told me I have POTS just by looking at me. Went to hospital who referred me to advanced cardio clinic. Since then I can barely walk around without dizziness or weakness and I have heart pain on and off  

quick note I have ME/CFS and I’m not sure if this is a big crash or something worse 

so on tuesday I (22F) was making breakfast and started to feel breathless. I was breathing hard and stumbled over to the couch, but I still couldn’t catch my breath. I’m not even going to discuss the incompetence of my parents not calling 911 right away. I went to the stairs to get my sister but collapsed on the bottom step and called out for my sister, who came immediately and called the ambulance. When they came I was dizzy from not breathing properly, and I was still super weak. I could barely squeeze the EMT’s hand. 

The funniest thing is, after fighting with doctors for months, the EMT looked at me and was like “you have something called POTS.” I laughed and was like “FINALLY.” Later the EMT told me he could literally see my pulse in my neck when he came and all the other reasons why I probably have POTS (HR spiked when I stood, female, small build). 

After a couple questions from the EMTs I started getting…silly. Like I was fully aware I was silly I just couldn’t control it. I was giggling and aloof. They tried to help me get up but I was like “hahahaha wheeeee” and they were so worried I’d faint. The EMT asked my sister if I was normally like this and she said “nope.” 

When we got outside I was cold so I suddenly burst out crying. I was so confused why I was so emotional. They were reassuring me and I was like “NO *sniff* I’M NOT *sobs* SAD??” It was really weird because I’ve had silly spells before but never that bad and never switching to crying. 

In the ambulance I was silly but then chilled out to my normal-ish self. I was talking to the EMT and then suddenly it was like I couldn’t talk at all and I just stared into space. He asked me if I have a history of seizures. I was like no and I was completely aware of what was happening around me, I just couldn’t talk. That ENT was amazing btw he was so nice and awesome with me. 

I got all the bloodwork done and a urine test and a chest xray and everything was normal. I was discharged and told to return if I had further concerns, but I was also referred to an advanced cardiology diagnostic clinic.

Since that hospital visit on Tuesday, I haven’t been able to walk around without suddenly getting dizzy or feel like I’m going to collapse. Multiple times a day my breathing stops for 5-10 seconds then I take a deep breath and it resumes normally. That only used to happen maybe once a day before. Yesterday I had another instance of not being able to talk for a couple minutes. The worst thing is the chest pain. It’s on and off, but I feel pain directly in my heart. I’ve had a stress test and echocardiogram with another cardiologist who dismissed all of my concerns (that was like a month ago so before this crash) but this is kinda concerning me. Especially when it feels like my heart is being stabbed. But sometimes the pain is on the right side of my chest, and sometimes there’s aching in my left shoulder. It’s mostly in my heart.

I’m on hold to get an appointment with the cardio clinic but just wanted to ask if anyone has any idea what the heck is wrong with me

What stops nighttime adrenaline dumps?

Currently on metoprolol ER 1/2 dose in the morning and I’m taking magnesium glycinate 200mg every night. Had my last adrenaline dump beginning of March before I started taking both. Tonight has been the worst. Shaking, sweaty feet/palms, nausea and stomach aching, a million trips to the bathroom despite not drinking much, cannot sleep at all and cannot even rest in my bed because i feel so wired and cannot get comfortable temperature wise - either too hot or cold. I thought metoprolol and magnesium glycinate got rid of this problem for me. Very frustrated that i am dealing with this again. My heart rate had been getting consistently lower with the metoprolol. Any ideas why this happened or what I can do so I am not dealing with this every night again?

i have had pots for around 3-4 years but was only diagnosed last December so i'm still fairly new to understanding things and figuring out patterns and triggers and whatnot but i always see people talking about their baseline and then they have the flare ups, i definitely have flare ups where everything gets real bad but i don't really have a "normal" state. everyday just feels so different and i have a very huge variety of different symptoms that are just all over the place, i don't think i ever feel the same as another day and my energy levels seem to be the same way just very inconsistent. i also worry i may be on a slow decline because i swear most days didn't use to feel this difficult but its hard to say because of the inconsistency idk if i'm just making that up in my head. anybody else feel the same way? is this normal?

Hi everyone so I’ve been experiencing something annoying. I felt great for the last year only a couple episodes. But now every single day after de morning and when I have to physically do something. Or go somewhere. I have the feeling like I haven’t eaten enough. Even when I did. I feel shaky and dizzy and my heart rate is high. Also I feel rushed and uneasy. Is this normal for pots?? I have been diagnosed for a year now. But is is never this bad.

anyone on a beta blocker, specifically propranolol?

i got prescribed it but i have a lot of anxiety around taking new meds, especially after reading the side effects...

Hi all,

I have PoTS, Hypermobility Spectrum Disorder (HSD) and the university hospital treating my PoTS strongly suspects I have Mast Cell Activation Disorder (MCAS).

Studies show that all three conditions can worsen worsen through a Covid infections and/or increase the risk for long covid (examples of these studies: PoTS [study 1, study 2], HSD [study 1, study 2], MCAS).

I have to get surgery and stay in hospital for 6 to 10 days afterwards. I managed to avoid Covid infections as far as I know (got loads of PCR tests) so far. The surgeon who would operate on me, supports me in applying to health insurance for a single room.

Has anyone been able to get German health insurance to cover a single room in hospital to reduce infection risk?

I’m curious what, if any, other heart/neurological/health issues have you ever heard of being misdiagnosed as POTS/dysautonomia — or alternately what issues have you heard of being masked temporarily or going undiagnosed longer because the person already was diagnosed with POTS/dysautonomia and the new symptoms of the new issues were at first assumed by the patient and even more importantly doctors to just be POTS/dysautonomia related?

Personally so far in my 5+ years as a middle aged man diagnosed with newly arising POTS/dysautonomia and no other really connected issues with a clear diagnosis (except suspected long COVID but even then I have a pretty unusual presentation of that with minimal ME/CFS, mainly just POTS and newly developed respiratory allergies and maybe worsened GERD though not even sure how much worse it is vs. more acknowledged) , anyway in my experience with POTS/dysautonomia the nature of my orthostatic symptoms change SO OFTEN, usually cycling, other times totally new ones cropping up or others disappearing seemingly forever or long term, it’s hard to really know which signals from your body to pay attention to any more LOL. I tend to assume everything is just POTS/dysautonomia!

I’ve seen one detailed account on this sub of someone being misdiagnosed with POTS for years when they had hypertrophic cardiomyopathy, but literally only one account and I don’t have any evidence that is anything but extremely rare.

I usually get a bad headache for the rest of the day after I’ve done the bending. I hydrate, wear compression and I take my medication but nothing seems to help with this. Even on low symptom days where I’m feeling pretty good, bending down feels awful now. It’s like my head is hanging upside down when I just bend to pick something up. Do you have any advice? I was diagnosed with the hyperPOTS last summer

I fly out for my best friend’s bachelorette weekend in a couple hours and I’m getting extremely nervous. I’m so excited to celebrate her but am so anxious about feeling well enough for all of the events/plans. I’m also on an anti inflammatory diet that helps my symptoms so the thought of eating out for 3 days worries me. I’m bringing all of my emergency meds and supplements but am still so nervous. I hate how much this illness has taken from me and that I now get anxious doing things I used to thrive in.

Does anyone else struggle with scoliosis or chronic neck pain? I’ve had it since being around 10 years old, but it keeps getting worse. I’ve tried physical therapy and try to be active but boy, I can feel the curvature of my spine getting worse. 😭🫠 My Dr. has noted nothing is exceptionally troublesome in x rays, however, it feels so discouraging being stiff and constantly trying to sit up straighter or lay flat down for relief. Wondering if anyone else in the community has a similar experience or has found anything helpful for combating this pain. It’s feeling pretty grim as I’ve just turned 30 and don’t see any sign of this improving. Big hugs to all the folks out there battling POTS and other chronic situations. 🫂

Hi all, I've been experiencing what is considered a "low" hr for me when standing/walking (70 - 100, max) and it is causing me to feel terrible. I am normally between 110 - 150 when moving around the house. But suddenly the last few days it has been dropping and has been making me feel really light-headed, faint, weak and very out of breath. Does anyone else with POTS experience this? What can I do about it? I do not currently have access to specialists due to where I live in Australia, so that is out of the question. :(

Thanks in advance for any help or advice 💕

I (16F), struggle with keeping track and managing my POTS. I’ve been debating between an oura ring and visible band for a while now. I love all the different reliable health features the oura ring has, something that stands out to me is when it predicts times you’ll be tired or stressed. Overall it seems smarter to me than the visible band. But then the visible band claims to be made for chronic illness and uses the spoon system which I really like so that way I know how much energy I have left to use. I’m super drawn and would love to hear some people who actually have pots opinions.

Hi, is anyone else's diastolic BP high, here is my BP from this week

I am seeing a neurology specialist who has expertise in autonomic dysfunction publicly in August

140/100
135/100
140/110
140/105
130/100
140/110
140/105
140/110

Vyvanse Fixing Health Issues?

20M 175cm/5”10 66kg

Blood Tests normal + Blood Pressure normal + EKG normal + 24 hour heart rate monitor normal — haven’t had brain scan + No Smoking or Alcohol

\*\*TL:DR: Vyvanse has gotten rid of my dizziness (PPPD+Vestibular Disorder/Migraines) and helped blood pooling in my legs.\*\*

I’ve recently started Vyvanse about a month ago.

Prior to this I had a bad weed trip that gave me a traumatic panic attack that spiralled my anxiety quite badly.

Over a few weeks of work, from this anxiety, I started getting dizzy and at the end of the day my eyes would be sensitive to light and have a slight blurriness when using screens + pressure in my head+ fatigue.

Then, during an anxious holiday, my dizziness (rocking on boat feeling) became constant and whenever I walked it felt like I was walking on a trampoline. This lasted for a few months but my body adjusted to the constant dizziness and I became less anxious about symptoms (I believe).

\*\*I suspect PPPD + Vestibular Migraines?\*\*

I’ve not had any significant health issues prior to this.

The only thing that could be relevant is that blood pools in my legs and sometimes hurts and itches at the end of the day but every doctor I see doesn’t seem concerned about it 🙄. I’ve had this since I was maybe 10-12?

Anyway, since I’ve started 30mg Vyvanse my fatigue has gone but also my legs don’t get as red from blood pooling or hurt (vasoconstriction?) and my dizziness does not exist.

This has become extra apparent as I’ve had a few days off my Vyvanse and feel horrible with headaches and dizziness accompanied with some dissociation.

Hello,

I just started mestinon and I was wondering if anyone ​else who took mestinon had side effects at the beginning and if they eventually got better?

Soon after taking a dose I get mild nerve pain and really bad brain fog, kind of the same feeling as when I think the blood isn't going to my brain, and stimuli seems way too strong (lights too bright etc) ​... Did anyone else have this? ​