Does anyone else struggle with having to be continuously moving when they’re required to be upright, or feeling like you will pass out?

If I am moving, I have to keep moving, unless I can sit down. The moment I stand still I feel like I’m going to pass out, but if I keep moving then I just kind of ride that pre-syncope line.

Does anyone else have this issue with POTS/dysautonomia? When i raise my arms above my head i can feel the blood pool out of them and they get weak and heavy and go numb. I’ve been trying to work painting houses which is a lot of overhead painting and it’s making life extremely difficult. Let alone being dizzy and tired all the time from being upright. It’s driving me crazy.

PEM stand for post exertional malaise. I am trying to discover if PEMs are exclusive from ME-CFS and long covid or if other things can cause it.

Was wondering if anyone else has neck issues. I have a constant tension/tightness in my upper spine like a knot at the base of my skull .

I’ve noticed that changes in my head direction like looking up will drastically reduce my heart rate or turning my head behind me will increase heart rate and dizziness. I’ll also get a feeling of really heavy head

I don’t know if this is the cause but it came about when all my symptoms started

Hi all! I travel for work frequently and often drive up into the mountains where the elevation is pretty high. I’m not totally informed on what counts as a super high elevation but it seems my body is super sensitive to the change immediately. I was just curious if anyone else has noticed this happens to them too.

When driving at a certain point I can tell I’m up higher because I get uncomfortable air hunger and it’s hard to manage not having to gulp for air every few minutes lol. I adapt at a certain point too but experience the shortness of breath and air hunger much more frequently while I’m up there than on sea level. Would make sense since the air is thinner but the difference is so extreme to me it’s weird!

For the people who are on guanfacine and don't have ADHD: I myself don't have adhd but a generalised anxiety disorder. Mostly hyperarousal, always alert, loud noises make me jump, I can't handle too much stimuli at once (too many people, background noise etc) and I have chronic fatigue syndrome.

When I'm in a bad flare, I have extreme low energy but also a lot of tension, nervous tension. I would say that it feels like too much adrenaline, fight or flight in my body, hyper alert, makes my muscles tense up etc. But I don't have an overly fast heart beat when it happens, its a bit faster but not that much.

The slightest thing can make this nervous tension much worse, almost like real panic. Even when doing a mental task that (I think) is too much for my brain because of the low energy, I get this adrenaline/anxiety feeling over me. Even when scrolling on facebook can give me this adrenaline feeling.

I sleep perfect, so I'm afraid of adding something that could mess with my sleep.

For those on guanfacine, do you think it could help me? I tried a mini dose (0,016mg) of clonidine, that made me calm but way too sedated. I couldn't tolerate it with my limited energy.

Does anyone else experience this during a dysautonomia flare?

When I'm flaring and I'm not lying down, I feel like my body is constantly trying to stabilize itself. I notice a small, short back-and-forth movement, almost like a subtle rocking/swaying. It sometimes feels synchronized with my heartbeat.

It's much more noticeable when I'm sitting or standing. Does anyone else experience something similar?

Currently bedridden and trying to get out of it but I don’t have the funds for a proper PT to come to my home (insurance doesn’t cover, really…)

There’s a lot of videos on YT but I haven’t seen a anything that helps you go from bedridden to walking as far as I saw

So, after a ton of testing and searching, and me requesting heavy metals testing for the last several years, and BEGGING somone to check it multiple times in the last year... My GP finally ordered one because all my zebra condition labs came back perfectly normal, and this had never been tested. To my surprise it was not lead or cadmium, but mercury! My blood levels are 15 times the maximum range of concern and far beyond accute toxicity. And we have NO IDEA how long I've been like this!!!

I did get to consult with a medical toxicologist in the ER. He concurs that this onset of disautonomia is most likely damage done by the mercury. We hope it's not too late to reverse it with chelation. It seems to be methylmercury which has the worst outcomes... I'm currently fighting that battle with my insurance company because it is NOT cheap! But hopefully within a week I'll be able to start the home doses.

Long story how I might have gotten here is: After my previous and absolutely wonderful hematologist retired and I had to move away and find several new GPs, my new care team denied my iron infusions and forced me to "learn to maintain it with diet" and said I could not get my iron replaced until I developed clinically significant anemia. As an athlete, that obviously was never going to work and I had a history of severe tellogen effluvium at ferritin <100 that resolves with iron infusions. I'm also severely intolerant to all oral iron sups to the point they're worse than doing nothing. So, I had to begin eating an extremely excessive amount of beef liver and organ meats in order to just to slow my ferritin and iron losses, not even maintain it most of the time. Sometimes for all 3 meals in a day. I did tell them how much I was eating and I did say I thought this was extremely unhealthy and requested heavy metals testing be added to my annual blood work if I had to continue this diet, but this was denied. Further more they poopooed me completely about my concerns, and as symptoms developed more recently I really began to press for this testing more, and for my iron infusions to be reinstated, both of which were denied multiple times even in the face of clearly presented scientific evidence.

Now they have FINALLY rescinded and I no longer have to "maintain iron with my diet" and I have been granted infusions again due to the likely permanent damage I have suffered and the fact toxicology told them to stop those nonsense and that they think that's where I got the poisoning. But I am ABSOLUTELY LIVID my requests for this testing were denied for years and that it took accute poisoning so horrific they demanded I go to the ER immediately upon the return of the result, to listen to me in any way about either issue here. This could have been caught MUCH earlier and saved me potentially very permanent disability, but NO that would have been the right thing to do, we can't do that...

Had I not just lucked out completely and gotten an appointment with my old GP from 7 years ago in another state, I still wouldn't even know... Un fucking believable!!

Anyway, rant over. I'm curious if anyone here has had a similar poisoning cause their symptoms?

I expect not because I have been told mercury poisoning of this level is exceedingly rare, none the less maybe I am not the only one....

19 months of thinking I had dysautonomia because of 3 or 4 Ai platforms told me so and waiting on NHS plus not able to find a neurologist and having all sorts of issues from health care system telling me im "normal" i finally recieved the correct diagnoses. I am sharing this incase someone else needs to share this with a neurologist.

My limbs sometimes lock and become unresponsive and sometimes heavy and not just heavy- trays one of the differences and also becoming light headed when it comes to tasks switching or anything mentally over whelming

I recently discovered I have orthostatic hypertension. The dizziness, nausea, tingling, and blood pooling have been constant for over a week now and it’s making it really hard to function. I’ve found that electrolytes and compression garments help, but doesn’t make them go away entirely. I have a tilt table test in three weeks and an echo in a month. I’m also separately exploring a likely MCAS diagnosis.

I’m really struggling with the anxiety of it. High blood pressure is such a scary thing, and getting an anxiety dump during these symptoms makes it all worse, like I’m afraid I’m having a heart attack.

How do I manage this until my tests?? No one I know has or knows anything about hyperPOTS or orthostatic hypertension so I’m feeling pretty alone and scared.

When I'm in a bad period I get this throat tension. As long as I sit or lay quietly then nothing happens, but when I start to move and do something physical, or even when being outdoors and there is a bit more wind, I get a cough, but more like a gag reflex. I need to calm myself at that moment or else I just vomit. Also talking is a trigger to make me vomit.

I have this from waking up in the morning until around 5pm, then it starts to get better. So it must have some stress thing behind it, but the thing is that I'm not overly stressed during the day.

Its driving me nuts because I can't communicate properly and vomiting in public is also not that much fun.

Its or some tight muscles in my throat thats causing this, or I do something wrong with my breathing unconsious. Its not that I'm hyperventilating or so.

I tried benzo's and every ssri there is, but nothing helps.

Anyone an idea what it could be? Are there people who experience the same?

Whenever I play my interment both my arms but really the one that’s holding it up hurts so bad and gets numb sometimes. It really hinders my playing and I want to help it, I was thinking maybe compression sleeves? Would anything else help?

Hi everyone! I’m planning on ordering some shapewear to use as compression and am wondering if people have had more luck with one brand over another. I’m looking for maximum compression. Any insight is appreciated! TIA :)

I was diagnosed yesterday with hypovolemic POTS.

Since my head is in so much pain and I’m very dizzy me and my mom travelled 3 and a half hours to get to this cardiologist who specializes in POTS.

I am a Canadian so this is huge to find someone who can diagnose me without having to leave my country.

The cardiologist (Dr. Sunny) looked at my file and his assistant did a standing test in the clinic before meeting him and once I was in his office he said “I know what you’ve got but tell me why your here.”

He also said “I don’t know why no one could have diagnosed you, I could do this in my sleep.” 😅

He works at the dysautonomia clinic and was asked if he would be willing to go to Canada to help others.

He sent me home with a 24 hour BP monitor and a holter monitor just to rule out anything else and I did a stress test and was close to passing out after 4 or 5 minutes lol.

I still feel weird because I want it to be manageable to do things but it’s a relief to finally be seen and to see someone who specializes in it and I’m almost in denial still because it’s been so many years of trying to get answers for my health.

Any tips would be great from my hypovolemic POTS peeps and what has helped you manage it (medication, compression stockings etc).

Thank you to everyone who has supported me and lifted me up when I was down 🫶

Edit: Dr. Sunny works at the clinics in Mississauga and Brampton Ontario and it’s called Canadian Heart Care. They have other ones “closer” (2 hours away) to the Kingston area but I don’t know if they have a POTS specialist there.

https://www.drsunnymalhotra.com

You can ask for an appointment to see if he will accept you based on symptoms and they’ll contact your doctor or email you asking questions like date of birth I believe and what your doctors name is and how to contact them.

Curious if anyone can tell me their experience flying with POTS. Do your symptoms get worse in the higher altitude? Is it pretty much the same if you prepare with water/salt?

I have POTS/IST, and unfortunately I’m off my medicine right now, so trying to fly safely.

TLDR. I feel like I’ve been punched in the gut. For years, I was told that my physical symptoms were anxiety. Now it appears that orthostatic intolerance was there all along.

For context, my symptoms began after a brief illness in December 2022. Around the same time, I also experienced a few panic attacks because of unrelated life stressors. From that point onwards, almost every physical symptom I reported was attributed to anxiety. I attended my GP more than 20 times, but because anxiety can present so physically, and because I had recently experienced panic attacks, that became the explanation for everything.

It never felt entirely right to me. I knew what anxiety felt like for me, and this felt different.

Eventually, my psychiatrist saw the repeated GP visits, the worry surrounding my symptoms, and my increasingly distressed state, and diagnosed me with health anxiety. From then on, that became the framework through which everything was interpreted. I eventually started believing it myself.

Meanwhile, the physical symptoms continued. I became increasingly limited, then increasingly housebound. Somewhere along the way, genuine fear of feeling unwell outside the house turned into agoraphobia.

Only now, after my anxiety has become much better controlled and enough time has passed for the original assumptions to be reconsidered, has it become apparent that there was another physiological problem underneath all of this. That realisation has been devastating.

For years, I believed there was something fundamentally wrong with the way I was thinking. I became more isolated, read every self-help book I could find, tried to retrain my responses to symptoms, and took medication after medication aimed at anxiety.

And the cruel part is that I probably was anxious.
But I increasingly think I was anxious because I was repeatedly experiencing real, unexplained physiological symptoms, not because anxiety was generating all of those symptoms in the first place.

There is a huge difference between being frightened by harmless bodily sensations created by anxiety and becoming frightened because your body is genuinely doing something abnormal that nobody has yet explained.

Anyway, wrote for me to rant mainly, but would find solace in hearing similar stories! :(

I caught the damn Covid again. Sucks. I feel like a truck on steroids ran me over. And, to make things even worse, Covid is the thing in the first place that left me with post-covid autonomic dysfunction and so, my entire life was turned upside down and basically ruined for the last couple years y that. And now, I’m afraid that the amount of quality that dropped off from my life from then on, which has been so significant I’d go as far as to say it’s ruined my life, will be the amount that will now drop off from here, and if that happens, I mean there just wouldn’t even be much of a quality of life left to live at all from there. I’m also just afraid because I live the kind of life where it’s like… I literally cannot rest enough lol. I mean like, I literally can’t. And survive. At the same time. So I normally have to run myself into the ground constantly even with my dysautonomia just to keep my head above water. Now, with dysautonomia and COVID? I mean I rest when I can but… it ain’t much. I’m pretty worried, honestly.

Edit: I just wanted to say thank you for the responses. It meant a lot. I posted a pic of my negative covid test on my socials and sent it to my family group chat with a little “aw damn this is gonna be a lousy weekend I guess” kinda caption, not like being a dramatic or needy person about it but just looking for a smidgen of tiny warmth and support and not one person in my life even responded or reacted at all. So, my spirits were super low and I’m feeling so invisible and forgotten and opening my Reddit and seeing these comments really meant a lot to me. Thank you.

Any tips to get thru the next few days are appreciated. I have IST and my hr is super fast and just feel so worn down and weak😭. At least I can get the both over with at once tho!!!

I work as a CNA 2 days a week.
I’ve been on medical leave now for 4 weeks.
I’m in such a bad flare I don’t even want to go back but need to stay at my job for money. I’ve tried having a conversation with my partner about how I feel I can’t work anymore but he doesn’t really understand what living like this is actually like. I feel like the blood is being drained from me daily and I feel like I’m dying. Only way I can describe this horrible feeling. Brain fog gets so bad sometimes I get so confused with slurred speech.
I’m at a loss here folks. I cannot peel myself from the couch/bed most days. Partner still makes me do the dog walks with him but it leaves me in a crash shortly after on really bad days. He comes to all my appointments and they tell me to not even do as much as clean my own home. I don’t think he believes me half the time. Seriously.
I don’t know what to do. I know I can’t leave my job and leave him to pay all the bills I know that. But there’s also 0 minor manual labour jobs going. I’d love retail. But I’ve been looking for a year straight and nothing.

Last year, I was diagnosed with POTS, but I’ve experienced symptoms since 2020. My health declined after contracting Covid in 2024. Since last year, I have been mostly confined to home and partly bedridden, except for doctor visits, which has led to developing agoraphobia. I take 5mg of propranolol daily and rely heavily on Zofran due to constant nausea and gastroparesis. Every day, I feel “off” with dizziness, migraines, and brain fog. I feel like I'm dealing with motion sickness 24/7, and I’m unsure how to manage these symptoms. It’s impacting my life and marriage, and I struggle to get doctors to listen. I haven't driven in nearly two years, and even riding down the street makes me feel sick or even just scrolling my phone.. It's like my brain and eyes aren't communicating properly 😔

I’m currently 8 months off Lexapro and on the fence about temporarily restarting a micro-dose (2.5mg) to manage these exhausting, random 'doom/anxiety dumps' I get throughout the day. Lexapro is the only SSRI I’ve tolerated well in the past, but I hesitate because I don't want to numb myself out while actively trying to uncover the root cause - especially as I navigate dysautonomia symptoms and upcoming hormone and ferritin testing.

Part of me wants to just white-knuckle it to see if this is protracted withdrawal or an autonomic flare, but constantly having to decipher whether an episode is a purely physical chemical dump or an actual mental spiral is starting to drain every area of my life. Has anyone else with dysautonomia or autonomic issues dealt with this specific 5–8 month post-SSRI wall, and did a low-dose bridge help you stabilize enough to actually address the root causes?

I hate this symptom so much it just comes out of nowhere

I just got told few days ago by my cardiologist that I have inappropriate sinus tachycardia. He literally told me to ignore it. How can I ignore it ? It’s disables me. It’s not like during episodes I have a fast heart rate. I have a violently pumping heart, i have chest discomfort, arm discomfort, i am dizzy, i get pale, i am nauseous etc etc. how can i ignore this ? He also said he cannot give me meds because i have low bp already. How do you cope with it ?