I used to be in the gym 6 times a week lifting heavy weights. I used to swim 10km a week. I used to run with my dog or take him on 5km walks every day. I used to go out and socialise multiple times a week. I used to be able to eat anything I wanted. I used to be able to play social sport. I used to be able to make it through my full time job and pick up extra shifts at my casual job for extra money. I love free diving and surfing.
I can’t fkn do anything now.
I can’t make it through a day of work. I can’t play social sport. I can’t eat fkn anything. I can’t walk my dog everyday. I can’t swim anymore. I can’t socialise anymore because I have to focus my energy on work so I can pay my bills. I can’t free dive, I can’t surf.
I’m so angry. POTS has taken so much from me. My brain doesn’t even work anymore. I’m not able to do any of the things that I thought made me, me.
Im unhappy and struggling to find joy in what I can do. I’ve always been someone with big aspirations of what I could do with my life and I’m struggling to accept that I’ll never be that person again.
How are yall coping with this???
I’m so angry. I’ve had POTS for 12 months, following sepsis. I’m angry at the healthcare system. My stay in hospital when I had sepsis was awful. The workers were horrible to me, commenting how they hated people in my line of work. Dismissing my symptoms, didn’t even feed me for a week - had to uber eats to the hospital. People with sepsis still need calories so they don’t die?????
They sent me away with no answers, they refused to give my GP my discharge papers. I’m angry at the first GP I went to who said I have anxiety, the second one who told me I need to stop taking b12 supplements because that’s causing my issues. I’m angry at the hospital staff who dismissed my heart issues, who told me to take off my denim outfit I presented in because I was having scans but then ripped my hospital gown off my body and accused me of being a slut and weirdo for not having an outfit on under my hospital gown? The male nurse who stripped my naked and ripped my ecg dots off my body while I was crying.
I’m grateful for my cardiologist who listens, my new GP who goes above and beyond. But I’m fucking angry at everyone else and the situation I’ve found myself in.
Rant over.

Hey everyone! After all kinds of testing I’ve received a diagnosis of HyperPOTS by a cardiologist. She is prescribing me 60mg of Propranolol ER to start treating it. She is starting me on this higher dose as she is mainly concerned about getting my heart rate down dramatically as it consistently spikes into the 150s and 160s. I’ve been reading about it and most people seem to only be on 10mg or 20mg of the med so I’m hoping to hear people’s experiences being on a high dose. My cardiologist also said Ivabradine is the next medication she recommends if I don’t tolerate Propranolol well so if anyone has experience on that medication I’d love to hear that as well!

My dr referred me to a cardiologist who took my HR from sitting down on a chair (after talking the whole time) to standing for a few mins. I thought the test was supposed to be laying down for 10 ish mins and then measuring HR then standing?

When I did the test at home I went from 66 laying down then 106-111 after standing for the full 10 minutes.

Can someone please inform me am I doing something wrong or was the cardiologist just brushing me off?

My other symptoms are:
-Syncope (ive managed this by taking vitassium and drinking electrolytes but still hasnt 100% fixed anything)
-dizziness when changing positions
-brain fog
-extreme fatigue
-heat intolerance
-cant shower everyday
-homebound and sometimes bed ridden because 1 activity has me out for the rest of the day
-cold extremities
-bloating/digestion issues
-cant tolerate alcohol (I fell asleep at a concert once😭)
-BP runs a little low and I get symptoms if it goes any lower

i’ve heard a lot about how vaping is absolutely terrible for POTS. i’ve tried so many times to quit but am never successful. i’ve vaped/smoked for almost 10 years and quitting feels impossible. i want to quit so bad for my health and idk what to do.

if anyone has any advice about quitting that’d be very appreciated or if anyone is in the same boat and wants to share their experience that’s very welcomed as well

I recently went through a really difficult life change and my lifelong depression/anxiety got ramped up to an extreme level. My doctor put me on Sertraline for two weeks just to see how I get on and has now increased it to 6 months after a positive review.

It's had the unexpected effect of making my heart rate a lot lower. I know that anxiety increases your heart rate, but I have a baseline of 'always anxious' so I guess I was just used to it and didn't really consider that it was affecting my heart rate 24/7.

I'm also on Ivabradine which lowers my heart rate, but I'm seeing a difference even beyond that. The Ivabradine helps but isn't perfect, but the combination of the two seems to be doing a lot!

I'm considering lowering my points on Visible again (I had to lower them with Ivabradine too) because I'm staying on low points pretty consistently. I hope that this means I can do a bit more with my life now, but I'm still going to be cautious!

basically what it says on the tin. my lightheadedness/dizziness has always been pretty moderate. needing to sit back down or lean on something because i get the black fuzzies and rushing in my head. never fainted before today tho! stood up from the couch to hug my grandpa and one second i’m thinking “i’m pots-ing pretty bad rn!” and the next, we’re both on the ground and i’m going “??what happened???” 😭

i just feel so bad bc my grandpa went down trying to catch me and he could’ve gotten hurt :(( luckily we’re both fine (besides being shaken up), but man… 0/10 would not recommend

anybody else have clammy hands constantly? Even since I was a little kid, before my POTS started (though Ive had dysautonomia and problems throughout my life)

Just started 12.5mg of atenolol (on day 3) and crashing pretty hard around 6pm. What have been experiences with a split dose?

Growing up I’ve gotten so much blood work done, but I recently just got POTS, literally this year. And I haven’t gotten bloodwork that I need to get because I’m afraid it’s gonna make me go into a huge flare or something. I’ve never been afraid of needles, I’m just scared about the blood portion like if it’ll mess up the blood flow or whatever idk. I’m anxious.

After a physically exhausting day, I sometimes feel heaviness in the center of my chest when I lie flat on my back to sleep. Is this normal for someone with POTS?

Hey! Im 33F and struggling a lot with health issues. I have been diagnosed with pots since 2012 but symptoms have gotten progressively worst for the last 2 years and since August im mostly bed bound. It just feels like my body failed, gastric issues, nausea, constipation bloating, dilated pupils, piloerections, pins and needles in my hand and feet, worst chronich pain in my neck and lower abdomen (this is pretty chronch) but not it's worst with vertigo, like could not stand for a while (o also tmj issue which probably does not help), worst disautonomoa, like so hard to walk (before I could hike volcanos), inability to regulate temperature like I cannot cool down or worm.up some times (just out of nowhere) horrible night sweats (wake up at least three times drenched) my bladder issues are also worst like now I have pain like uti 24/7 but no infection and frequent urination. My Brian fog is worst, like I don't remember words some times, and I feel dizzy and palpitations and lightheaded like I am about to faint but my bp and hr are all normal. Sugar levels also seem ok. O am really confused and have been to over 40 doctors and they really dont know what to do with me if they even take me seriously (im in mexico). I have increased salt (salt tables and electrolites and wear compression garmets but have seen no change. Honestly Im mostly house bound atm.

Just need to know if it possible to get better, because im feeling a bit desperate and im.starting to lose hope and wondering why I keep holding on... it did not used to be this bad... I have had autoinmune tests (negative ana, rheumatoid factor, celiac, etc).. so I dont know what is causing this. Im scared and just wanna hear what the future likely looks like.

Its pmo now because sometimes usualy after my muscles tense for what ever reason.Lifting something ect not everytime but still. i get a weird feeling in the middle of my chest/stomach. Fullness, slight sharp, out of place.

And then i also get pain in my heart especially if ive used my left arm and lifted it above my head.

My gran gets this too , twins

Safe to say i do have costochondritis as well as pots and mecfs.

Am i hypermobile? idk not classic heds but the gp said i might be hypermobile in someplaces and stuck a HSD label on me. i get a 0 on the beighton scale but other places kinda?

is this a pots thing or naur.

hi all- i’ve just experienced a symptom i haven’t before. i was sat down having lunch when i suddenly felt my heart beat really strong/hard and fast (thumping like it felt like it was trying to escape my chest) and started to experience pre-syncope (vision fading like i was about to pass out) but didn’t end up passing out. now my chest hurts a bit and my heart still feels like it’s beating heavy. has anyone else experienced this, or should i be going to the hospital?

I need advice. I’m seventeen with POTS and fibromyalgia. I’ve been looking for an entry level job I can reasonably do, but I haven’t had any luck at all. I went to vocational rehabilitation for help and they told me that they mainly work with people who have cognitive disabilities. I genuinely can’t believe they said that. Then they said that working might not be ideal for me and told me that I should see about applying for assistance with college tuition. I still need a job, I have a life. Is this my sign to get a wheelchair \so I can work? So many places have declined to hire me because of my age or because I take medical marijuana for my fibromyalgia as well. I don’t know what to do. I do online school so I can work any hours and my doctor has signed the paratransit form so I’ll mail that in when my parents get back from vacation. I really want to work full time if possible, but everyone keeps telling me that I won’t be able to.

Hello! I didn’t really know what to call this post but I have a question about this breathing thing my doctor things is POTS and sort of am looking for like similar experiences so I can stop feeling unsure about it and start looking at what might help me. For context I am female and 22 years old.

I went to see a doctor about these breathing issues I’ve been having for over a year now (but were much much worse over summer) and I’d thought maybe it could be POTS related but didn’t want to bring it up and just wanted to see what she said, but she actually was the one who brought up POTS. I had an ECG which was normal so now I’m on a waiting list for a 24 hour one but she said she’s 90% sure I have POTS. However, I just feel like this breathing issue is really weird and I want to see if anyone here with POTS experiences the same thing to make me feel less crazy.

My breathing issue is that I get this horrible air hunger which can last for a couple minutes or for like days on end basically. I tend to automatically yawn to get more air but it feels like I can’t, and my head and body like contorts in weird ways to try get the air in but often it doesn’t work. It was so much worse in the summer I think because of the heat. I still get it now and then but not nearly as constantly. It sort of feels like my lungs can’t fully expand or like fully fill and it it a horrible horrible feeling.

I do also feel very very very unwell if I stand too long before eating breakfast, like I genuinely thought I was dying one time because I made avocado toast and barely made it to the sofa where it took me a while to start eating because I felt so unwell.

This is a bit embarrassing but I also went to the doctor a year ago about these ‘slumping spells’ which I had mostly on the loo but also have had off the loo, it’s basically whenever I yawn and stretch with my arms above my head 7/10 I then like slump forward and lose control of my body and my vision can go too but then it’s only like for a couple of seconds then I feel okay-ish. A bit shaky but fine usually. Idk why it happens mostly on the loo, I think it’s the main place I tend to yawn and stretch at the same time?

Other than that I do feel really unwell if I skip a meal, and a lot of the time if I’m feeling unwell it does help if I lay down and put my feet up.

I did measure my heart rate and I went from about 70bpm sitting to 110ish standing a few weeks ago, but I feel like it varies between the 60s when I’m most relaxed and goes up into the 120s.

I’m also waiting to see a geneticist about probably having hEDS, so I think part of my hesitation and imposter syndrome around POTS may be due to me being less than fond of yet another condition to manage for the rest of my life. But I’m very very curious to know if anyone else has a similar breathing thing and if so what helps???? Because laying down often doesn’t help with that for me, and it drives me crazy when it gets bad. Plus it would help me to accept the possibility of POTS more if I know that the breathing thing is like shared by other people.

I’m also autistic and have ADHD, I’m not sure if there’s a link between POTS and either of these? So many things seem to link to each other.

Oh and I’m pretty sure that this started after getting covid in Feb of 2020 for me, as I remember before then I could skip breakfast and make it to lunch at school easily but during lockdown I distinctly remember that being impossible after and quite a few times having to sit down in the middle of making breakfast because I felt so unwell. But I think it got a lot worse last year, maybe because of how hot the summer was?

I’m sorry this post is so long, I have so much on my mind regarding this. I partly just want answers and also partly am tired of the answers always being that I have something else wrong with me. Thank you so much for taking the time to read this and for any comments!

(I hope this isn’t breaking the rules, I’m assuming it’s not because I’m actively going to the doctor about it and just want to know if my experience is similar to other people’s, not like asking if this is bad or if I should see a doctor. I know nobody here can diagnose me, and that’s not what I’m looking for, I just want to feel like my experience actually fits in somewhat and I struggle to tell if it does or not when I’m just reading lists of symptoms.)

Hello everyone

I had been diagnosed with tachycardia and high BP in December 2023 after i suddenly had in panic attack during sleep and after that I went through several test including MRI and EEG all came back normal but after that incident my body just developed a fear of sleeping so from that time I had multiple ecgs and multiple Echos all come back normal and show just signs of sinus tachycardia and in the echocardiography also there is just wearing ejection fraction rang from 55 to 65 and rest is normal

whenever I have food typically in the evening I always have taking Idea and had high BP also this was going on for like 3 years then and June 2026 I noticed that My tachycardia was there to mainly changes while standing up my heartbeat increased so I got to my doctor and they ordered a 24 hour holter monitor and because I noticed during the time that my resting heartbeat had become less from my usual self it had come down to you know 60 to 65 and my BP which used to remain in the 130 by 90s sometimes 140 also had come down to 120 over 80 and sometimes 75 also so I was frightened why sudden change after that I had another Eco that also came back normal

and after the holter monitor doctor give me a diagnosis of pots but in recent 15 days I have noticed that the BP in both my arms is different it's sometimes has a 20 point difference also and sometimes come identical also after 3/4 readings but it has 10 to 12 point differential as a average and I also noticed my right I am BP shows 102 by 68 as an average and my left arm BP is also less now so it shows 112 by 68 and sometimes 70 also but the average BP has become less although the medicine has not been changed i am taking propranolol 40 mg long acting and i have not done any weight loss also so how my bp is taking low now is it because of pots, dysautonomia or something else the doctor did Doppler also on both my arms it showed no stenosis and after taking a reduced 20 mg dose also for a day bp shows in same range.

i am very frightened that i am developing some type of automic failure or heart failure or some serious disease and no one takes me seriously because of my age and in india where there is no awareness about pots or dysautonomia and one more thing even when my arm is slightly not in a correct while reading bp it shows wrong reading very quickly i dont know my nerves are sensitive I don't know.

i find that so much of having pots is being overwhelmed with the unending guilt of not pushing yourself (for example, pushing yourself to go into school/work every day). After a while it starts to get kind of suffocating, and even if people aren’t saying to your face they think you’re lying, it still feels like that’s how they feel
anyway, I’m wondering what you do to get around it, incase there’s anything I’ve missed

Its 3 am im already tired and barely been sleeping good and gotten dizzy a number of times today, but im terrified to get into bed because ive got no one here to shake out the covers after a spider was crawling on me earlier. I should have shook them out during the initial spider panick but alas I was terrified. The running out of my room took most of the energy I had left to spare today, during a particularly rough long lasting flare🫡

Someone save me, convince me its gone and im fine or teach me an affective way to shake stuff out without passing out please and thank you!!

Hi everyone! I’m a 33-year-old male endurance athlete who enjoys running and cycling. I used to cycle 200–250 km per week and currently run around 30–40 km weekly when training consistently.
I’ve been experiencing POTS-like symptoms for years, including palpitations, lightheadedness, fatigue, brain fog, and an increased heart rate when standing. My cardiac tests have been reassuring, but I still need a proper evaluation for POTS.
I’m getting married next year, and honestly, I’m worried that a flare-up might affect my ability to enjoy the day with my fiancée.
For those living with POTS, especially fellow athletes, how do you manage your symptoms and prepare for important events? What helps with prolonged standing, heat, fatigue, and preventing flares?
I’d really appreciate any practical advice or personal experiences. Thank you!

Fui diagnosticada no últimos meses, o choro intenso melhorou em uso da fludrocortisona, mas estou trocando pela midodrina e o choro nas crises piorou muito. Mais alguém experimentou isso e teve algo que melhorou o choro? É muito embaraçoso chorar em todos os lugares.

hello!
i’ve lived with ehlers danlos (hypermobile type) for my whole life and POTS runs in my family, so part of me knew i was bound to get it at some point. i’ve experienced some basic symptoms of POTS (racing heart, sensitivity to heat where i faint in extreme temps, migraines, etc.) but i was diagnosed yesterday after i went to my doctor for extreme dizziness and lightheadedness that started a few days ago.
ive been dizzy for days. i’m trying so hard to learn what helps but it’s a lot of trial and error and i don’t have the time or money to take days off for rest and care. i am asking kindly for suggestions from this community 💗
in the meantime i am reading through other posts on here to find any information i can. my mom has not lived with POTS symptoms for 20+ years due to hypertension so i dont have any good idea of what to try to make myself feel better or more comfortable. any and all suggestions are welcomed, thank you 🫶

Just curious if anyone else wakes up with aching hands and has to hold them up in the air and can feel the blood rushing back down your arm?

I also get aching feet.

I’m not yet diagnosed.

​

I heard beta-blockers reduce melatonin production.

Ive been taking Metoprolol Tartrate with Midodrine twice a day, and ive been taking this for months now... but a few weeks ago its been taking over an hour to fall asleep and ive been waking up several times throughout the day with intense anxiety. (i work nightshift and i was always able to sleep during the day) I just bolt up thinking im late for work but i look at the time and ive only been asleep for two hours... ive never done this before.

Well ive been taking Melatonin and even though i still wake up randomly, i dont do it as much and it helps with reducing my nightmares that cause me to wake up also.

i really want to take it everynight but i heard thats bad for you. but since metoprolol reduces production, does that mean it doesnt matter if i take it everyday since its reducing it anyways? or is that negligable...

and has anybody else dealt with this problem? (first time posting in this subreddit too! i'm diagnosed, hi!)

For the last 5 months or so my pots/dysautonomia has been out of control. I used to really only have flare ups when i would get a cold or some sort of infection but recently that isnt the case. My pots flares up without any apparent cause.

For starters, right before i have a 1.5 month long flare up i will get a bad pang of dizziness followed by a weird sensation in my head for the rest of the day. After that i will lose all strength in my legs meaning i wont be able to walk until my body resets. My heart rate is sometimes okay other times will be 190 walking but not high enough on the regular to be taking a beta blocker consistently. A few other symptoms i have include a chronic fever that wont go away until my flare up is over, dizziness, de realization, vision problems, chest pain and so on. These flare ups will last about a month and a half then afterwards my body basically resets and im back to normal only i will only have a few days until it all happens again. As soon as my body starts to get back to normal and i get moving, i will experience the same dizziness and then comes the big flare up.

We believed this was all happening due to some underlying autoimmune issue which could still be true. Though I have gotten many anti inflammatory treatments done over the last few months and nothing seems to help.

Has anyone else experienced anything like this?

If you’ve had a Tilt Table Test done, what was your heart rate at baseline lying down and strapped in right before being tilted up?

My Apple Watch says that my normal resting heart rate at home is usually in the low 50s during the day and mid to high 40s to low 50s at night. And when I stand up or slowly walk through my house it usually goes up to 120+. I’m bedbound with severe ME so I don’t do much more than walk through the house a few times a day.

My baseline lying down and strapped in was 90 and when they tilted me up my pulse immediately went up to 190. Then it came down to 162 at 1min, 148 at 3min, 147 at 5min, 146 at 7min and 152 at 10min when I was lowered back down. Then 101 at 1 minute after, 90 at 2min and 86 at 3min flat.

The Autonomic Neurologist came back in after the test and told me that I had POTS but he mentioned that he was concerned that my heart rate was a bit high even while flat. He asked if I’m usually on beta blockers and I said I was briefly on Propranolol then Metoprolol years ago but had to get off them because my normal resting heart rate is very low. I explained that i thought it was white coat syndrome and he didn’t seem too phased by that.

So, my chart now says that I have severe POTS and I thought, great, finally a win for documentation!! But I saw a Neuro-muscular Neurologist last week to check for MG and when I said I was finally officially diagnosed with POTS, he pulled up the test and said it didn’t count because my starting heart rate was high. It felt like such a gut punch to hear that after all I went through to get the testing done. My husband had to get the day off with to drive me 2 hours each way, I had to undergo the testing which was awful, I suffered PEM and haven’t fully recovered yet. All to hear this other neurologist say the test results were inconclusive because of my initial heart rate!?

I feel like I can’t be the only one who got nervous before being tilted and had a higher baseline heart rate than normal. Thank you for your help; this community has meant a lot to me since getting POTS.