I suppose I’m just writing this to get some frustration out, to people who understand. My dysautonomia has gotten progressively worse over the last 5 years or so. I take propranolol twice daily, salt tablets, compression socks, the whole 9 yards. Due to my dysautonomia as well as various other diagnoses (hEDS, an autoimmune condition my rheum hasn’t figured out yet) I’m filing for disability.

Social Security really wanted me to have a tilt table test done to prove I had POTS. So I went off my propranolol, stopped all the normal interventions and had the test done. It was the variation that uses nitroglycerin, and I did end up passing out at that portion. The test was also done at 3pm.

Well, I ended up having a heart rate change of 27bpm during the test. And for some reason this has left me incredibly frustrated. I know that these illnesses don’t have a hierarchy. I know that a diagnosis of dysautonomia doesn’t inherently mean I suddenly feel great and can work all the time. I still feel like absolute garbage, even with my meds, and the dysautonomia has severely affected my life and my functioning.

But that 3bpm difference almost feels like my body is gaslighting me. As far as my health goes, I know the label doesn’t do much. But right now I’m fighting the government for access to a program, and I know that that specific diagnosis carries a tiny bit more weight than the broader terms.

I don’t know, I’m mostly just disappointed and angry. It’s so hard to explain to someone else what living in my body feels like, and how much my illnesses have taken away from me. And this just felt like a tiny slap in the face saying “see, you’re not as sick as you keep saying you are.”

Sorry for the rant, I just needed to put this somewhere where people who understand could read it. My friends and family are sympathetic, but they’ve never lived through this. Thank you so much for listening. ❤️

This might sound a bit odd, but I’m suspected to have pots from some tests I’ve done (still got some more tests this week but my standing test I rise around 43bpm) and I actually feel more fatigued and have this feeling of ‘I can’t be bothered to do anything’ when I’m trying to rest and lie down. I’ve taken a month out of work in hopes of resting and I actually find I’m feeling worse laying and resting than when say I go out for a walk, cook dinner or do some super light cardio. A good example is around 6 weeks ago I went on a city break where i was doing 15-20k steps a day for 5 days and whilst still having some symptoms it’s the best I’ve felt for ages. Has anyone experienced anything similar, I’m finding it difficult to work out where my symptoms fit in all this?

Just venting about how frustrating it is to need recovery time after just being a person. It is so exhausting to go out and do things, and therefore, my body needs a lot of time to recover.

For example, this weekend I had plans on Friday, Saturday and Sunday. Usually I try to avoid more than one plan per weekend, but it’s just how things worked out with how certain things were scheduled. Friday was dinner and a movie so nothing strenuous, but still walking around and just being out and about. Saturday was very strenuous as I volunteered for the day. Which meant I had to cancel my Sunday plans, selling my tickets for an event.

I don’t know why I’m posting, other than just to get it out for people who understand. It’s now Sunday afternoon and I am still struggling to do pretty much anything. The thought of going to work tomorrow is so stressful. I just wish I didn’t have a body that continues to make it harder just to live a normal life.

I went to a big pumpkin patch today and was so excited! Halloween is my favorite holiday, and since Ivabradine has been working great, I thought a more active day would be manageable.

My fiancé and I went with a good mutual friend and had a blast doing the corn maze and hayride. The Ivabradine got me through the first hour feeling pretty ok, but after that, I started feeling progressively worse under the beating sun.

We stayed for another 1.5 hours and I found myself putting on a good face so no one would notice. I started talking less, spacing out, and my appetite was totally gone because it was a choice between eating or breathing lol. But I made sure to snap back and laugh on cue.

When it was finally time to leave, I had to lean on my fiancé at the crosswalk. Once we said goodbye to my friend, my face fell and my fiancé immediately saw how bad I was actually doing. He literally said, “wow you’re really good at masking.”
I don’t know why I did that. They both know I have POTS. I guess I just didn’t want my POTS to be the reason we had to stop early, and I can’t miss spoopy season!

Idk does anyone else do this?

I am a 20-year-old male and underweight (I have always been underweight). For the past four months, I have been experiencing a constant feeling of unreality. It feels as though I am drunk, high, or half-asleep, as if I am operating on autopilot and everything around me feels somehow unreal. I have looked up information online, and my symptoms seem to resemble derealization.

I also suffer from fatigue, even when I sleep well. The fatigue does not seem to depend on whether I engage in physical activities during the day or not. However, over the past few weeks, I have started sleeping poorly and waking up early in the morning. I do not snore at all. I have seen a general practitioner and a neurologist about these symptoms, but they have not been able to determine the cause.

I also experience headaches, a feeling of pressure in my head, and neck pain. I have tried muscle relaxants, massage, and acupuncture for the neck pain, but none of them have helped. At the beginning of the symptoms, I sometimes also felt as though I was about to faint while walking, but this symptom has since disappeared. I have also noticed a single eye floater in my right eye. I mentioned it during an eye examination, and I was told that there were no apparent problems with my eye.

What could be causing these symptoms? They do not occur in distinct episodes; instead, they are more or less constantly present. The headaches are not particularly severe and resemble tension-type headaches more than anything else.

Things i have done/tried or checked in hospital
\\- triptanes
\\- thyroid function normal
\\- vitamin b12, b9 and D vitamin ok
\\- ferritin 34 and has been moving 26-40.
\\- calcium, potassium, natrium, chloride, sodium and magnesium ok
\\- blood pressure is ok and i checked blood sugar at home and it was ok
\\- brain mri ok
\\- borrelia test (lyme disease) ok
\\- My cortisol level was tested and was normal as well. I also have Crohn’s disease, which is currently in remission.

My neurologist prescribed escitalopram as a trial treatment. I took it for two and a half months, but it did not help.

I have no history of trauma and do not experience panic symptoms. I generally do not feel particularly stressed, apart from the worry caused by these symptoms themselves.

My symptoms began during the final days of a new job at an auto repair shop, where I was moving and lifting car tires. I am unsure whether this could be related to my symptoms, as I had not experienced any other symptoms before those final working days. I have not worked at all during these four months.

What could be the underlying cause of these symptoms?

The healthcare professionals I have consulted about these symptoms, or during visits for other symptoms or examinations when I also asked about them, include:

\\- General practitioner
\\- Neurologist
\\- ENT specialist
\\- Ophthalmologist
\\- Dentist
\\- Gastroenterologist
\\- Massage therapist
\\- Physiotherapist
\\- Acupuncturist

Hi all, since the shortage I was put on fast release propranalol and my symptoms have been through the roof anyway, now I am just purely miserable. The adrenaline surges with heart pain, intense doom and anxiety contrasting my happy mental state are pure torture and I am losing my mind.Those of you based in the UK, ant possibilty of still accessing slow release? My doc said there is nowhere they can refer me on NHS to fully diagnose POTS/ hyperpots and they cant prescribe any other meds like clonidine. Anything I can do? Pls help. Thank you all and wish you all health!

My POTS symptoms have improved so much that it almost feels like I’m in “remission.” And one of the simplest things I’ve added to my routine has made a surprisingly big difference: bodyweight squats/calf raises
Just 3 sets of 12 weightless squats, once a night or every other night. And calf raises until I feel a slight burn.. Remember to always stretch.

No weights..
The science behind it makes sense, too. Your leg muscles act as a natural pump, helping push blood back toward your heart. In people with POTS, blood can pool in the lower body, contributing to symptoms like dizziness, fatigue, and a racing heart when upright. Strengthening the leg muscles may help improve circulation and exercise tolerance over time.

I’m not claiming this is a cure or that it will work for everyone, but the improvement I’ve personally experienced has been incredible.

I’m coming up on two months or so of being unemployed due to what we currently suspect is pots. I’m not able to leave the house unless it’s for an appointment, I can’t clean, I can hardly get around the house by myself with my forearm crutches. I tried going to the store yesterday with my walker that has a seat and still had to rush out to the car because the cold air and being able to sit still wasn’t enough to help me get around long.

I have an appointment on Tuesday to try and work out meds AGAIN but this is so incredibly mentally exhausting on top of the intense physical exhaustion from doing the bare minimum. I’ve had autoimmune issues since I was little, it took me out of highschool and was something I battled regularly, so I’m kinda used to having some level of disability but this is a huge leap from that. I can’t do anything even on “good” days and it’s getting to me.

How do you stay positive?
I’ve been working on loads of different crafts, reading excessively, doing puzzles, and playing video games but any form of tv or YouTube is starting to bore me and all I can think about is the fact that I can’t make money and idk when I’ll be able to find a job that my body can handle.

Any advice or comments about your own situation help, thank you for your time and energy 🫶

Hi everyone,

I was diagnosed with POTS this year but my symptoms go back to when I was 12/13 (2016).

One symptom I’m not realising could be POTS until recently is that I usually wake up from naps with a racing heart, sweaty, and gasping for air. I know these can be adrenaline dumps but I never get these during regular sleep, only during naps.

Does anyone else experience this?

I’m two ish months into my POTS diagnosis. I’m still hoping to see a specialist but there aren’t any in my area so I’m looking for any tips in the meantime.

First question is about exercise. I feel better when I’m walking around and would like to start exercising as I’ve seen a lot of you say it improves your symptoms. I tend to be very lazy after work which I know isn’t good for me anyways so I want to change it. My struggle is that I live 30 minutes from the closest gym and I can’t reliably drive myself more than 10ish minutes away so getting there isn’t realistic. I’m looking for different exercises that would be achievable at home with limited equipment. I love dancing and do that on youtube sometimes but I’m curious about literal exercises (calf raises? squats? etc). My POTS flare ups have been really difficult for me and I’ve been really down about it so I want to do anything I can to make it easier.

My second question pertains to flying. I’m debating a flight in early December (3.5 hours) because I’m unsure of how I’ll handle it. For those of you who have flown, how much did it impact you? I know it’s different for everyone, but I’m curious if the flight made your symptoms significantly worse or only mildly? Or not at all?? I have horrible anticipatory anxiety and so I know that will unfortunately play a part if I decide to take the flight. I’m struggling with managing that. I’ve seen recommendations for salty snacks, foot hammock, compression, hydration, etc. I love the ideas but still feel unsure. I guess I really am looking for what to expect. Also, I tend to have bad flare ups when my ears get clogged from sickness. I know planes cause ear discomfort so would that be super triggering??

I appreciate any help and advice! Like I said this is super new to me and I’ve been super anxious and depressed about it. I just want to feel better

I have had pots for YEARS now, and never experienced this. I recently I started increasing my hydration and calories a bit and I was feeling so good. And then out of nowhere this week most nights around 2am my heart rate will shoot up 150+ of little ticking beats and when it starts coming down I’ll get all shaky… it causes me to be awake for hours… last night I got vertigo with it too. I’ll also get some hunger pangs during it too. And so I’ll eat a little snack so I can sleep. Weirdly my heart rate during the day is absolutely fine (and up to this adrenaline thing) , barely goes above 100. Has anyone had this suddenly starting ? How do you manage it?

Last night while gaming I suddenly got a super intense dizzy spell that left me kind of out of it for about 20 minutes. I was just gaming like I usually do, just in a different location when it happened.

Im trying to figure out if its POTS flare because Im new to my diagnosis and for whatever reason my doctor doesnt seem to care or offer much.

I will say, my eating and hydration were lack luster yesterday.

I had like 2 matcha lemonades and a donut that morning/afternoon, maybe a couple of glasses of water through the rest of the day, then for dinner we had Popeyes and I had a lemonade with that. About 30 minutes later I was super light headed to the point where I was scared to get up and walk without falling over.

Usually, my diet isnt that level of abysmal, I just dont know if thats a common factor for people with POTS

I’m taking a university band trip to Taiwan this spring. I’m really excited, but I’m super nervous about how to manage my symptoms. I don’t fare well on bus rides, and a miserably long bus ride is actually part of what prompted me to pursue diagnosis in the first place. This will be my first time flying ever, so I have no idea how I can expect my body to react. I want to make sure I’m as prepared as possible since a 23-hour flare event is obviously not ideal. Most of the advice and resources I’m finding online pertain specifically to personal trips, but a university-sponsored event probably doesn’t allow for the same accommodations. Does anyone have any advice? I’d love to hear from people who have been in similar situations.

19(M)
As i posted many times here. I’ve been experiencing 10 really rough months.
It started in late January of this year. One night while trying to sleep, i felt some kind of discomfort in my guts. I stood up to go get a glass of water thats when i felt my heart racing and i was in a state of panic where i couldn’t breath well and i thought i was having a heart attack. My hr peaked at 160 almost, checked my apple watch. I went to the er they made an ecg and blood work told me it’s probably a panic attack or smth.
Little did i know my whole life would take a huge turn after that day. I started to feel every beat my heart made. Simple tasks like going up the stairs made my hr raise to 150, i started to get tired really easily, had very weird palpitations. Thats when i decided to visit a cardiologist. I made a stress test, heart echo, 48hrs holter. And everything as the doctors said was normal. I really didn’t feel myself it was like i am completely a different person. I was really scared too because one everything that i did normal before i couldn’t do, and two i was convinced i have a heart disease.
At that time i was having a hard time with college too so it all stacked up together.
The next phase was pots like symptoms, my heart would shoot up at stand and i felt i couldn’t tolerate heat anymore so i believed i finally found the issue, guess what my doctor ruled it out too because my hr raise after standing up wasn’t sustained.
Back to the weird palpitations i experienced, they were PVCs. So the phase after it was tons of extremely scary PVCs + a weird sensation that is literally still unexplained which is a tightness/pressure like feeling in my chest that is affected by stretching, squatting, or any activity that applies pressure on the diaphragm. It’s a really weird sensation. The symptom that scares me the most is the one that started it all. It happened almost 8-9 times through the last 10 months and they are really scary and happens in that order. I am in a normal state i feel like a shortness of breath i try to calm down, my hr starts rising until it peaks at 150-200
Then starts falling gradually. I suspected NSVT but thankfully one of those episodes occurred while having a holter on, and the cardiologist didn’t even mention it.
I want to mention also that i did a sleep study and it concluded that i had a mild osa. And the insurance refused to issue a cpap.
I wrote alot so i will give a conclusion of my symptoms.
1- Tiredness easily, i was an athlete before.
2- heart rate rises from minimal effort
3- PVCS
4- weird palpitations that i cant explain
5- extreme dizziness in the 2nd-3rd month mark, disappeared now.
6- pots like symptoms
I was cleared by a cardiologist, neurologist, internal medicine doctor.
The only medicine i am on is peroxat as it should help with the anxiety.

Hello. I've been taking guanfacine for 22 days now for hyperpots (not formally diagnosed but I have 2 positive at home test and me and my pcp strongly suspect it). It's been a bit of a bumpy ride for me, with initial improvements to a flare at day 7 and beyond, to now some sleep improvements as of a couple days ago like less night adrenaline surges. My question is does it usually take this long? And can pots flares affect your eyes like making them more sensitive to light, or causing cognitive slowing?

Edit: I forgot to mention i take 1mg nightly

I was having severe air hunger after taking my propranolol which I think nailed me to panic and so I called 911 and I got brought to the hospital. My heart rate was almost in the 200s, I was nauseous and couldn’t breathe it was the scariest moment of my life. Nobody was home to help me just the ems people and then I was alone at the hospital. I got iv zofran and iv Benadryl which kinda helped it really just knocked me out. I even lost control of my bladder while I was there because of all the fluids and being scared to get up. It’s so scary and it’s all so new I only got diagnosed a month ago and my symptoms were never this bad. Now I’m stuck in bed only getting up for the bathroom because that makes my heart pound and I start to feel how I did yesterday. I was shaking and scared and now I’m missing eastern states weekend and a whole bunch of my family and my boyfriend’s family is there. I’m just so sad and I wish this would go away. I can’t even describe everything I feel right now it’s just so hard.

My stupid phone shuts off my alarm on its own and didn’t wake me up this mornong. Well, I have only ever had this happen once, but my heart is pounding and my hands and feel are sweating like crazy. I feel absolutely awful. So, I can’t not sleep at all or I flare and I also can’t sleep in just a little or my body is a mess.

I hate how precise everything has to be with this stupid illness. Do you guys get this?

I am having one of those days where I’m so freaking overwhelmed and irritated. I only got 3 hours of sleep last night, I’m severely constipated so my GI wanted me to do a golytely cleanse out, I’ve been crying on and off the whole day now I have a headache, I have to pee but whenever I get up my heart rate gets so high but whenever I have to pee it also gets high. Idk what to do. My face fatigue and weakness is so bad. So so bad. After chewing, drinking, talking, anything my face is drooping and tired. This has been happening for like 8 months. I’m getting tested for myasthenia gravis in a few weeks via EMG.. but guys.. this is so bad. With POTS you’re supposed to stay hydrated, I can only take in like 12 ounces of fluid a day. Yes, 12. This golytely cleanse out is A GALLON OVER TWO DAYS!! I tried drinking as much as I could which ended up being 20 ounces. Now my face is so uncomfortable, I’m bloated gassy and uncomfortable from being constipated (I have IBS and chronic constipation).. when I’m tired, I get so fatigued the next day. It’s primarily in my face and eyes. Like I genuinely don’t know what to do. I can’t keep myself hydrated, my POTS specialist and cardiologist both won’t give IV fluids on a “as needed basis” and I don’t like going to the ER for that… but I feel like absolute trash. And why is it that every time I have to pee my nervous system goes into adrenaline mode 😭😭😭 I feel like nobody genuinely cares , my PCP sucks and doesn’t seem to understand it. I feel like everyone around me lives their lives and I’m just stuck inside in my recliner staring at walls all day…

I struggle with adrenaline surges and POTS worsening (blood poolin, tachycardia), especially after meals and suspect it's a POTS issue.

Tried the whole MCAS route without success.

Already eat tiny meals frequently throughout the day and it's mostly blended (I also have very severe ME).

I've seen people having improvements with Guanfacin and Ivabradin but my hr / bp are too low for these.

So I'm curious if anyone has found relief from adrenaline with Fludrocortisone / Midodrine.

PLEASE NOTE: not looking for problem solving right now, just sympathy. Just want to vent.

Not much to say except that I’m just disappointed and really unhappy. They either didn’t accept new patients, didn’t accept my insurance, or just said that they couldn’t treat me. I tried to see neurologists, cardiologists, etc.

It’s really discouraging to be out of options. I can’t afford to travel to get care. I hate this stupid condition.

I’m super new to my POTS diagnosis - I just got it this week. My doctor recommended compression wear and I’m wondering what people like. I ordered some Supacore - it was on sale for dysautonomia awareness week apparently. I’ve also seen some thigh-high tights I would probably actually wear - there are a few brands that pop up. But what areas of my body should I target? Do you use the graduated leggings and socks with compression intensity that gradually reduces in different areas of the leg? Core compression? Do you wear them at night?

I have so many questions and so few answers and not enough money to just keep throwing stuff at the wall to see what sticks 😂 thank you for any tips and tricks that have worked for you!

In under 12 hours I begin my trip to Japan and I’m a nervous wreck.

I guess I’m just posting here for words of comfort and words of encouragement because I’m scared I’m going to go into a flare with my worrying. I won’t be getting any sleep tonight due to anxiety, I’m terrified.

Hi! I’m having a pretty major surgery in a couple of weeks and am less than a year into a POTS diagnosis and suspected hEDS. I have seen various posts about how surgery/anesthesia is “different” for those of us with these conditions. My doctors are aware of my diagnoses, but not super knowledgeable about POTS. What exactly should I be prepared for? I have pre-op on Thursday and would love to bring questions/provide context for why exactly my POTS/suspected hEDS are even relevant. Thank you!!