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.

I can't think, or feel, or articulate myself. Thinking is so hard, doing anything that requires mental effort is exhausting.

I just want it to stop. I just want to get on with my life. It was already hard enough.

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

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

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!

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

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.

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)

All of this just makes me incredibly angry and frustrated and being at a psych ward does nothing for me except for that I can't attempt here. That's all. The therapy doesn't help because how am I supposed to see the positive things if there aren't any in my life? And how am I supposed to not be scared of fainting if a thing that often happens with this shitty illness is fainting???

I'm incredibly burnt out, I have no energy anymore. I'm so agoraphobic, depressed and have bad POTS symptoms that I'm only staying in my bed here. Everything else is meaningless and feels like a marathon. I can't even get food because that means I would have to fo downstairs into a huge dining hall which is... impossible to do. So maybe I'll just starve here

I think I have given up without actually giving up on my life because I'm too tired to even attempt 🫠

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

Fui diagnosticada no últimos meses, o choro intenso nas crises 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.

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?

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!

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.

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.

Hey all, I got diagnosed with pots on September 4th of this year. I started for a month on metoprolol ir twice daily. The adrenaline surges in the evening were super intense. For about 2 weeks now ive been on propanolol 80mg ER. It is way better than the metoprolol.

However, I've noticed that instead of adrenaline surges as intense as before, I occasionally feel like I have elevated blood pressure. I also had a bad flare up today when I went out to lunch with family thats lasted the last 2 hours. It feels like intense anxiety, not high BP. I had to walk out, do some breathing, and walk. I feel really out of it and just generally not good at all. With lots of fear that I'm doing my best to allow be here.

I've struggled with anxiety before my pots diagnosis. My question to some of you is if you relate to finding a medication that feels like it's improved a lot but still get similar flare-ups? Any advice if you do deal with this?

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.

Hi guys, currently undiagnosed but have a refferal pending (initial consultation is this weekend!)

I have extreme nausea that happens when I go from laying down to sitting up or standing up. It usually lasts a few hours and is often worse when I have just woken up.

The nausea is so bad that it makes me gag and retch.

Has anyone else experienced this and what do people do to alleviate it?

I'm on Cyclizine at the moment but it doesnt help fast enough in the mornings so would be greatful to know if anyone had an tips or tricks .

I fully plan to discuss this with the doctors but its currently unbearable.

Additional context:

I also have GORD/GERD and i take medications for this daily. This nausea is different as I can have 0 reflux symptoms when it occurs.

TYIA

Hi everyone,
I was wondering if some of you are also diagnosed with autism or ADHD?
I’ve read some literature mentioning that neurospicy people are more prone to POTS. I am diagnosed with ADHD and we suspect I’m on the autistic spectrum as well.
That makes it very difficult to regulate my anxiety and I believe it makes POTS symptoms worse.
Anybody else? Any suggestions on how to handle it better?

may I ask what medicine do you take? I’ve been diagnosed for just about a year now and lat, unless my anxiety is getting worse over this, it seems like symptoms are getting worse.

my cardiologist mentioned propranolol ER. and I know there is another like metropranolol (spelling?? I know two people who take this one)

but I’m so scared to take the medication too nicdont know why. maybe because of possible side effects, if you stop it can increase change of heart attack?! I don’t know why this is freaking me out.

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!!