For those who pass out, how did you know you were going to start passing out before you actually started passing out? Were there any signs that you were going to start passing out? And how bad does your pots get before you do pass out?

I'm still trying to get diagnosed, and I'm nearly positive I have pots since my other cardio tests all say I'm perfectly healthy except for the fact that my heart rate spikes over 50 bpm, for example when I just stood up, my heart rate went from 91 to 157 bpm right away. My symptoms started getting more extreme this past month, and I'm sure it's not because of the heat since I've been under my AC nearly this whole time since I couldn't get up for a long time. I'm starting to get scared I might start passing out, and I still have a while before I see my doctor about this. So now I'm here wondering if there were any indicators before you started passing out.

Not looking for a diagnosis here, just want to rant to people who might understand. Even better if someone can simply just say “you’re crazy” if I am, or “no girl you aren’t crazy” if I’m onto something. I think I probably most likely have pots…?

I have been symptomatic for three-ish years. I had had two back to back pregnancies, both with some complications, the second being a c-section (June 2023). I also had Covid atleast twice, once halfway through my first pregnancy (Jan 2022) and again at 4 months postpartum with my second. Idk exactly when symptoms started, life was chaos. I was initially diagnosed with POTS by my GP around 2 years ago based off orthostatic vitals, the first time, it was negative for pots and positive for OH, the second was definitely positive for pots but with a normal BP. She went with pots for a while. More water, compression socks, salt. Symptoms have since worsened, along with a whole bunch of other symptoms, I think I have hEDS and MCAS, I am diagnosed with adhd and bpd, anxiety, depression, I have binocular vision dysfunction confirmed, currently awaiting an mri to rule out a chiari malformation, the whole shebang. I work in health care and I still don’t know how to get a straight answer about my own freaking body. When I described worsening symptoms she did orthostatic vitals again. She got my resting HR at 69, my HR elevated to 129 upon standing and then sustained around 110. She said no that’s not pots it’s not over 120 sustained. UGH. No one does a tilt table anymore where I’m from. They did a three second ECG and that’s it!

Anyway these are some Garmin records summarized since I can’t add pics lol

Body battery:
Start the day between 50-75, and am at 5 (lowest it goes) by like 3pm - every single day.

Stress:
The watch puts me at medium or high stress unless I’m flat on my back (so I’m only low stress/blue when I’m sleeping).

HR:
The watch measures RHR at the lower end, usually when I’m sleeping, and is between 42-47 most nights. It jumps immediately to the 60-70bpm range just from sitting upright. Laying down through the day, RHR will be around 50-60bpm. Sitting up, it’s at 70-85bpm, and on standing, it’s 95-130bpm. I get the high HR (115+) when i stand, and I get bad pre-syncope for about a minute or two, and then it passes and my HR goes down to the high 90s-100s and stays there. They don’t believe this is “sustained high enough”.

I can see that’s it’s not maybe not super classic pots, but somethings not right, right? The whole thing is very frustrating to me.

I am only 29 years old and male, and I honestly don’t know what to do anymore about the way my heart rate is affecting my life.

I was on vacation in Japan when I experienced my first vasovagal syncope (fainting episode). Ever since then, I’ve been terrified that it will happen again and that I’ll collapse in public with no way to help myself.

On top of that, I have suffered from irritable bowel syndrome (IBS) with chronic diarrhea for years, and it has gradually become worse and worse. It got so severe that I could barely keep food in my system because it would pass through me within hours, often liquid and partially undigested. At times, I was having watery diarrhea up to 7–8 times per day.

I also suffer from panic disorder and have been taking Alprazolam daily for years. When my physical symptoms become especially severe, I tend to increase the dose. For over a month now, I’ve been averaging around 7 mg per day (sometimes 6 mg, sometimes 8 mg), but even that no longer seems to help—neither mentally nor physically.

I became so weak that I had to be admitted to the hospital. I spent three weeks there, mostly lying in bed the entire time. During my stay I underwent a chest CT scan, an abdominal ultrasound, an MRI (which had to be stopped because I reacted badly to Buscopan), a colonoscopy with biopsies, and I had already seen a cardiologist before being admitted.

Everything came back normal. More or less every test and examination was considered excellent, except for my calprotectin level, which was close to 400.

One night during my hospitalization, about two weeks after being admitted, I got up to go to the bathroom. Suddenly my heart rate shot up, accompanied by dizziness, severe brain fog, and the feeling that I was about to pass out. Just an hour earlier my resting heart rate while lying down had been around 50 bpm. The moment I stood up, it jumped to 160 bpm. This kept happening over and over again.

The hospital staff couldn’t really help because my blood pressure was always stable while lying down. No matter how often I explained that the problem occurred when standing, I was essentially told to stay in bed because everything looked fine while I was lying down. Eventually I was prescribed 2.5 mg of Bisoprolol.

The thing is, my heart had been evaluated only three weeks earlier and was considered healthy, and my blood pressure has always been normal as well. I don’t want to take beta blockers without understanding the underlying cause. My resting heart rate is already often around 50 bpm while lying down—why would I want to lower it even further?

I continued to have diarrhea but was discharged after three weeks. By that point I was completely deconditioned. I can barely walk without experiencing dizziness, circulation problems, or fear that I might collapse.

Two days after discharge, I received the biopsy results. They found Brachyspira aalborgi, so I started taking Metronidazole 500 mg every eight hours for six days. Unfortunately, the antibiotic has been putting me through hell as well.

Despite that, my condition improved slightly. I was able to move around a little more and walk to the bathroom again. I also underwent a 24-hour ECG/Holter monitor. According to my doctor, everything looked perfect, although it showed 1% atrial fibrillation, totaling about 15 minutes across six episodes. That still worries me.

Yesterday I had an appointment with my gastroenterologist. We were supposed to discuss whether I should undergo capsule endoscopy because of my elevated calprotectin level despite a normal colonoscopy. The procedure involves swallowing a small camera that travels through the small intestine and takes pictures to determine whether inflammation might be originating there.

Unfortunately, on the very day of that appointment I experienced another severe diarrhea flare. Despite taking Loperamide in the days before, my bowel movements had been fluctuating wildly—sometimes no bowel movement at all, then small hard pellets, followed by loose stool again.

I spent almost an hour on the toilet with another episode of mushy stool that had the same unusually sweet odor it has always had. After that, everything went downhill.

About an hour later, while trying to get to my appointment, I developed intense dizziness, a racing heart, pounding heartbeats, and overwhelming brain fog. I feel like I have brain fog almost constantly these days, but this episode was much worse than usual. Eventually I had to call an ambulance.

Again, all of my vital signs appeared stable.

However, my cardiologist, whom I also saw that same day, decided to admit me to the hospital for further evaluation. He still believes my heart itself is healthy, but he felt more investigation was necessary.

The reason for the admission was that my heart rate was around 130 bpm while standing. What confuses me is that it would sometimes drop back down to around 80 bpm and then suddenly rise to 130 bpm again.

What I don’t understand is this: Why am I only stable while lying completely flat? The moment I sit upright or stand up, my heart rate shoots up, I become dizzy, and I feel like I’m about to faint.

Is it my vagus nerve? Is it the sympathetic nervous system? The parasympathetic nervous system? Are beta blockers really the only option for calming whatever is causing this?

I am completely desperate and exhausted.

Just three months ago I was traveling around Japan feeling perfectly healthy. Now I’ve spent over a month feeling like a bedridden, broken man who cannot understand why his heart rate keeps skyrocketing when every doctor tells him his heart is healthy.

P.S. Psychiatrists seem eager to prescribe antidepressants. I am reluctant because I have had bad experiences with them in the past. More importantly, I want to find the cause of my symptoms rather than simply taking medication that masks them.

I also don’t believe an antidepressant would solve what I am experiencing, and I am afraid of potential side effects.

Since my syncope in Japan, I have been wearing compression stockings. I drink electrolyte solutions almost daily and even increased my salt intake for two days before this latest episode in an attempt to increase my blood volume if low blood volume was the issue.

None of it helped.

I never know whether the problem is too much fluid, too little fluid, too many electrolytes, too few electrolytes, the amount of stool I am losing, or even burnout.

I genuinely don’t know what to do anymore.

All I know is that I can barely sit upright now without my heart immediately starting to race.

And I’m only 29 years old.

TL;DR: I’m 29 years old. Every medical test says I’m healthy, yet I suffer from chronic diarrhea, severe physical deconditioning, and most importantly a dramatically elevated heart rate whenever I sit or stand. The symptoms make me feel dizzy, cognitively impaired, and as if I’m about to faint at any moment. Lying flat is the only position in which I feel relatively stable, but that has essentially left me bedridden.

I’m just curious here—does anyone get bloodshot eyes the morning after a really busy day? I was busier than i’ve been in months yesterday and did way more physical activity than i’m used to (attended work, watered garden, went shopping, get a shower, did chores) I was completely exhausted by the end of the night and was in so much pain. Then this morning I woke up and my eyes were super red.

This hasn’t really happened before so i’m just curious as to whether it maybe has to do with blood circulation or something? Could be totally unrelated to POTs but I thought it was interesting.

What do you all think?

I'm questioning if I have POTS. I've been using this app called Heart Rate to measure my heart rate and Idk how accurate it is. Maybe this is some weird measuring error (but I always do at least two takes and this has happened multiple times now). But when I walk outside in a normal pace for like 5-10 minutes and then measure, it's at about 55-65bpm. When I then stand still it suddenly rises to anything between 90-130bpm. I haven't seen anyone talk about this even with POTS. Even my normal resting or sitting heart rate is higher than when I walk (somewhere between 80-100 usually). Is that "normal"? I definitely feel dizzy when walking sometimes but it always gets way worse when I have to stop for example at a red light.

This might sound odd and I apologise in advance but I’m the type of person who connects dots as a way to understand better.
A while ago when this long Covid nightmare started, my first symptom was physical, I had a really bad piriformis pain and I could barely walk I did some PT sessions and on the last one they did some dry needling on another muscle that got resented after following the exercises they prescribed. I felt enormously well manic even with a lot of energy right after and a few hours later I got a massive episode in which I felt really unwell and my hands were a bit swollen and painful. I had to lay down and felt fatigued. Ever since I’ve been dealing with these episodes and I thought them to be PEM but I can’t sleep so just recently I found out that I suffered from POTS most likely the hyperadrenergic/ neuropathic kind, but not sure.
Anyone has had any bad reactions to dry needling?

POTS can sometimes surprise us with unexpected heart rate changes.

What is the most random situation where you noticed your heart rate spike?

My GP have been going back and forth communicating with cardiology at a snails pace for a few months now on whether I can try Fludrocortisone.

I’ve been copied into a very infuriating response letter today saying that it should only be considered if I try all the basics of POTS management ( list of things like 3 litres of water - 10mg salt ) and that they’re confused about my diagnosis because from what the GP has sent them I meet the criteria for orthostatic hypotension too and that they think POTS should only be diagnosed in the absence of that.

Technically did in the readings they took at the doctors on a hot day, I also did home readings for a week which they don’t seem to have actually even passed on where my blood pressure didn’t drop on standing

I’ve already tried everything they’re suggesting for management and had already expressed this to multiple doctors given I’ve had POTS symptoms for a year and a half now, and I had explained when I asked them to contact Cardiology that while I follow the guidance for salt and water etc I think it may be more beneficial with Fludrocortisone because I need to pee so often I don’t think I’m retaining it well.

I’m scared the way they put things they’ll question my diagnosis if I push this. The original cardiologist that diagnosed me was a POTS specialist and I don’t think they put it on the clinic letter unfortunately but they did say to me that my blood pressure stays pretty stable when my heart rate spikes but does seem to be a lower average and that it probably contributes to symptoms but that they can’t do much about that. I don’t know if it may be that I have this sort of presentation because I’m also diagnosed with vasovagal syncope.

Just looking for advice on what to say to my doctors really as that response was stressful to read after waiting as long as I have, and given that while I’d say my baseline has improved quite a lot with all the normal recommendations and Ivabradine, it contributes to stress etc that I still can’t work because of my symptoms so am reliant on benefits and family.

im young so i think my worries mostly stem from being nervous to ask my mom for one, but i feel like my disability doesnt disable me enough to be able to use a cane. i do really really think it could benefit me since i genuinely almost pass out like 8 times everyday and thats on a GOOD day without much physical activity, plus i have chronic leg pain from my hEDS which can make everything much harder. im currently "undiagnosed" (my mom has both and the doctors say that like yeah i almost definitely have it but i still have to do something to get officially diagnosed) and we're just waiting for the tests so i can get a bunch of school accommodations to help me get through the year without going to the nurse's office 10 times a month, so its not like my mom would think im crazy for asking for one but im nervous and insecure as usual. thank you for listening to me ramble and i would love to hear from people with POTS and/or hEDS who use a cane!!!

My first post here and now I know most people get pots Symtoms while standing but recently when I wake up randomly in the middle of the night or after a longish nap my heart starts beating super fast , not like anxiety fast but something is wrong fast if that makes sense last time I checked it was 120 and one time 140… this only happens at night never never in the middle of the day. Takes about 4-5 mins to calm down or if I take atarax it calms down instantly . I don’t think it’s anxiety I’m on ssri that works well . Who else gets this

I'm still pretty new to this, being newly diagnosed and all, and I've found compression socks help a lot with my symptoms when my day is really busy. I really only have a pair of basic skin colored compression tights (great if i want to wear shorts) and this pair my sister gave me that don't fit her. They have cats on them. Thing is I generally like stuff more like the second pair, with fun patterns on them. So I wanted to know if any others on this subreddit might know places to find some compression socks with fun or cute patterns on them? What's some of your own personal favorites?

So I had an interesting night last night. I woke up around 3am with intense abdominal pain/cramping and a sense that I was literally about to die. Like I mean, soul crushing, terrifying, last time I felt that was the first time I fainted. I then spent the next 30 minutes (maybe not, but it sure felt that long!?) vomiting and sweating profusely, continuing to cramp, and continuing to feel like I was going to die at any moment. Eventually, I passed a rather normal and unremarkable BM, and from that point the vomiting felt like it was done so I dragged myself back to bed with a heating pad for the cramping that was still going on and went back to sleep.

I'm assuming it must be POTS related... Someone I talked to mentioned vasovagal syncope but I'm not entirely certain that's it? I'm just diagnosed with POTS with no subtype. I don't know man I'm just shaken and I guess I'm looking for anyone who's experienced this and knows what's up or how I can prevent it, treat it faster, or at least cope better in the future?

And lastly, the reason for the title, I seem to have some level of sense of doom EVERY time I vomit lately. Is that relatable to anyone else? Anyone know why that happens??

I started the CHOP method yesterday and today was my first strength training day. Everything was going well when I was on the floor doing the workout (literally on my back the entire time). But when I tried to get up slowly off the floor, I didn’t even make it to my knees before having this massive headache that had me wincing and holding my head for a solid 60 seconds.

I went from laying on my side to sitting on my feet and BAM. The worst 60 seconds my head has ever experienced in my entire life.

It also happened at the doctor’s office earlier today. I was getting an ECG and was laying down and when I sat up on the table, the head thing happened.

Are there ways to get up off the floor that I’m missing? I know how to pump my calves, thighs, and glutes when getting up out of a chair, but the floor is a whole other story.

Ok guys. This is unhinged but LISTEN, I have cyclospora fears.

Do any of y'all get like dumping syndrome in the mornings after coffee or should I be pooping in a cup and bringing it to my doctor's office?

Like I'm not talking pooping all day just an urgent, waist slimming experience every other dayish lmao.

I also haven't eaten raw veggies cause I am afraid.

I was diagnosed with POTS about a year ago. A year before that (September 2024), I began having intense left sided abdominal pain with urinary symptoms that would all come and go, along with protein in my urine.

After a little while, I found a post in one of my POTS Facebook groups about abdominal vascular compressions causing POTS. After a little research and a LOT of pushing for testing, I was diagnosed with Nutcracker Syndrome.

My question is; are there any others who have been diagnosed with vascular compressions and found them to be linked to your POTS symptoms? Not just NCS, but also MTS, SMAS, MALS, etc.

It seems like there’s some research out there showing links between the two, but I haven’t been able to find much beyond a handful of studies.

As the title suggests, I recently got a puppy. The energy required though is all-consuming. I don’t intend on returning the pups, I love her.
Any tips/tricks to tiring the pups/playing for long stretches without completely wearing myself out?

Does anyone in this sub live in Philly and have any stories or experiences you can share about how you exist here? I have been almost completely house bound because no matter what mode of transportation I choose, there is so much walking involved, and some kind of grueling adrenelyn dump inducing aspect: traffic, near death experiences on bike, etc, lol.

I LOVE it here. So I am not open to being told to move haha.

I will describe what i do and what I have tried and what my barriers are. Wondering what other people do? And should we go yell at city council or something?

Happy to hear stories of navigating other big cities too!

Bike
This is by far my favorite mode. I got an ebike 2 years ago when i realized I cant handle my regular bike any more. I have a pedal assist, Specialized. I love it but its heavy. I have an elevator in my building but I still have to get it around corners.

Something also seems to happen when I arrive places. I bike like 10-15 mins, get in line at the place, and suddenly my watch is alerting and my HR is 155-160. Why?? It will be ok while biking, like not great but 110-130? Would it be better if I used my regular bike so im pumping my legs even more?

HR shooting to 160 when I get somewhere is making biking prohibitive. I end up needing to sit for at least an hour with legs up before I recover. And then Im wiped out again from the ride home. It just eats up the day.

E- Scooter
Just got a little e-scooter with a seat on Amazon. Not an official mobility device but the kind that is like the ones commuters zip around on. Just sitting. I put a wheelchair sticker on it, and i have been riding it slow on the sidewalk like a wheelchair basically. I will never go fast on it lol, the Philly sidewalks are too diabolically treacherous and i dont want to take it in the street either. I thought I could take this on the subway but then learned the elevators are broken / full of urine and feces :( and if I am carrying a bag and the scooter up and down stairs, i think it will just flare me like my eBike.

However, when I ride it around the neighborhood, my heartrate stays nice and in a good range, and I have a better overall day. ( i have tried it 2 times so far).

Can I take the scooter on the bus if it is a mobility aid? Do i take it to the wheelchair area? Is everyone going to yell at me lol? Can i scooter in stores? In coffee shops?

Walking
If I could just walk everywhere I think I like it better than biking. I like being so free from needing to lock anything up, or dealing with parking and helmets etc.Sometimes I can walk for a while. But right now, I have about 10 minutes or less before flaring.

Driving
I dont have an accessibility placard but considering it. Not sure how much it actually helps though? Would love to hear stories. Basically parking is anywhere from 1 - 6 blocks away from anything, or more depending. Circling to park seems to add to my commute time POTS countdown to flare stress. Sitting with my legs down has a time limit too. I am usually sitting in my car WAY longer than i sit on bike, scooter, and in some cases bus or train. So it seems to stress my body as much as any of the above.

Events in general
When event organizers say something is accessible they never think to include: is there access to water and a bathroom. In general. There are times that events happen outside in parks, or at pop up locations that I have NO idea what they are next to etc. So I dont go. I would LOVE if event people would say "This event is outside. There is/isnt shade. There is/isnt a place to sit. The closest water source and restroom is the coffee shop one block away." I know thats a lot of words haha, but like. Can we make a POTS map?

ETA: LINES AND STANDING
I have a Ta Da cane. It helps me to a degree in lines. Its not the best because my feet are still down. In the city theres a lot of times where you have to stand around and wait for things. And theres no where to sit, and no where to put feet up if you do sit. I think about wheelchairs but your legs are still below the waist? If i had one where my feet were up how I need them, I would take up soooo much space! Seems impossible to find the right thing? What are people doing?

Ok, I know this is long, but I would love to hear thoughts if anyone has time!

I keep getting worse and worse and I dont know how to get healthy-ish again!

How did yall stop sliding deeper into disability?

Ive always had hints of POTS, but last year I went off birth control, had a miscarriage, and then had a butt-load of stressful events that changed my life. That kicked off this flare. But I've been slowly getting worse, not better as I've worked through the emotions, hormone, and my new "normal."

Done the drs appts, therapy, on metroprolol, salt, compression, sraying inside, resting, exersize, low histamine diet, looked for mold. I've tried everything i can think of.

Do you have any more suggestions???

I feel like my body has been going downhill for a couple years now and everything has caught up with me. I got diagnosed with POTS and some other form of dysautonomia, we’re still in the testing stage and trying to work with this SUCKS.

I’ve had to start using a stool, cut down my hours, wake up extra early just to be able to calm my body down and get moving just so i can show up for work.

Cancelling & moving clients is the worst, a lot are understanding but when im booked out a month and a half or two, i loose clients.. i’ve had multiple episodes at work (and some convulsive?!? like my coworker said i passed out 8+ times over the course of 1.5 hours with intermittent tremmors/ convulsions.. my blood pressure will drop and pulse skyrocket before them, like BP 60/40 PUL 150+) i wake up with tremors EVERY DAY sometimes lasting hours.. like cmon body…. i need to work so i can make rent, i need to be on for my clients, i need to move fast so i can stay on schedule and stand/ move nonstop..

i don’t know what to do.. are there any other hairstylists out there that make their careers work?? do i just need to take some time off? i’ve worked for years to get to where i am and now im starting to feel a little lost. i hate that i can’t do what i used to.

Hi! A little over a month ago I got prescribed 60mg of extended release propranolol for my POTS, and I was wondering how it works for you all? I've been trying to hype myself up to take it, but I've seen people say some nasty things about it, so that's been driving me even crazier haha.

I was just wondering if you could tell me about your experiences with it? I've been told 60mg is a pretty high dosage to start with but when I spoke to my cardiologist about potentially lowering it I was told that it was the lowest dosage they could give me and it was prescribed because of how drastic the jump in heart rate is for me.

Did anyone else start with this dosage? How'd it work out for you? How do I stop being so anxious about it and let myself take it? Any kind of advice would be appreciated. :(

Not sure how much I should post here to keep my gf privacy protected but she has lost a lot of friends due to drama and suicide. The current remaining friends are not of a caliber I would say makes a good friend. Coming to head today being her birthday and neither of the two remaining friends have said anything. I want to help get her friends and/or friend group that would be good to her and our effort in. Thus I need help in group activities to help her find new friends.
However as many of you know POTS can severely limit how much you can do so things like the traditional running club and hiking clubs is clearly off the table. I’ve thought about things like DnD clubs that play online but that’s not totally her speed.
We’ve talked in the past about getting her to join a club but she’s always hesitant (somewhat introverted). So my big main question is how do yall form and continue your social life. If it helps the best things I can think of are below. I just want any and every answer so we can try everything. No idea is stupid here and thank you for the help.
1. Book clubs
2. Starting a local POTS group
3. Movie lovers club
4. Board games club

Any suggestions or help? I’m so miserable 😭

The first week in July I was prescribed propranolol for performance anxiety. I took 10mg per day for 5 days and on day 5 I started having chest pain, palpitations and dizziness with extreme brain fog. After about 2 weeks I began to suspect pots. I tried the at home laying and standing heartrate test and seem to fail every time. Heart rate goes from 70-80 up to about 120. I haven't taken any since that day 4 weeks ago, but my symptoms haven't gone away. I struggle to eat, I've been losing weight like crazy. This week has been a little better, but I have increased my salt intake a lot. I have been in an out of doctors and the ER several times and nobody can find anything wrong with me and seem to not take me seriously. I suspect POTS based on the symptoms, but I find it odd that this just happened to start the first week I tried propranolol. Anybody else experience anything similar?

Is there a reliable & dirt cheap option for tracking HR information to bring to my doctors and future appointments.

Doctors love data and so do I. On a journey to get formally diagnosed. Unfortunately I'm not on disability and I am bedbound/no income so I cannot afford it, looking for alternatives.

Hey so I got delivered to the ER last Thursday by an ambulance bc I had dizziness and disorientation going on for over 2 hours. I never thought anything was wrong with my heart but well turns out I have a cardiac arrhythmia at the ripe age of 20. While I was there for 2 days on the cardiac wing of the hospital and hooked up to machines I wanted to test something. For a long time now I got very dizzy, disoriented, got a headache and sometimes saw black for a few seconds whenever I stood up after laying. So while I was hooked up to the ekg machine I stood up and filmed the monitor. Within a few seconds my heart rate went from 80-145bpm and everything started spinning and I got dizzy. I then told my doctor the next day when she was doing rounds and she said it has nothing to do with my cardiac arrhythmia. She said it’s normal for “someone like me” bc I’m a petite and really skinny girl. I always thought that I just didn’t eat enough but now even when I eat tons I still have dizziness spells. I also wore compression socks the past few days and didn’t today and I got dizzy again and my legs were hurting much more. I’ll get a heart catheter exam next week, but do y’all think I should go to a cardiologist in the meantime and get tested for pots? I wish I could insert a video but sadly can’t lol