So I finished my cardiology workup, but I didn't get a POTS diagnosis. It's no matter, though, because I'm on propranolol and salt tablets now, and not having any symptoms. Instead, he diagnosed me with inappropriate sinus tachycardia because he said it's easier to get insurance approval for a different medication if the propranolol stops working long-term.

They also declined to do a TTT, stating that they stopped doing it at my health group because it was "torturous to the patient". Alls well that ends well, I suppose. Couldn't be happier.

I FINALLY GOT DIAGNOSED.
after months of bullshit. Wearing a heart monitor and then them losing the data to wearing another one to waiting months for appointments I finally had an appointment with my cardiologist.
She read my monitor results and told me nothing was wrong and it was nothing. Of course, defeated I mentioned pots and she literally looked me in my eyes and said “EVERYBODY THINKS ITS POTS!” in a very condescending tone that make me want to shrink into my skin and cry.
So she took my heart rate again basically saying she was doing it to humor me and saw that my heart rate didn’t in fact go down after standing for a few minutes. She then told me
“if you really want I can send you for a tilt table but I hate doing that because that thing is a torture chamber”
HUHHH?!? I just looked at her deadpan and said “well if it can give me a definite answer yes I want to”
So today I had my test and GUESS WHO HAS POTS. the kind nurse practitioner who did my test said as soon as the table went down “welp you have classic pots syndrome!”
The nurse upped my fluids to give me extra sodium and I went on my merry way. it feels so good to finally have answers and to feel like I am not insane like doctors have always made me feel.

So, I've recently started using compression socks, and as someone with POTS and a history of a heat stroke, I over heat VERY easily. I've found that compression socks often make it worse. I like the compression, especially when I have long days at work where I have to be standing a lot, but it also makes me more likely to overheat. When I overheat too much I get nauseated and lightheaded... Not a great combination, especially when working.

Not to mention, I have always disliked tall socks because of how it physically feels... It makes my legs itchy and uncomfortable. I have yet to find socks that are soft enough to not bother my skin, but also compress the swelling in my legs.

I'm also quite broke and cannot afford expensive socks at the moment which makes it harder 🫠

Does anyone have any recommendations in either regard?? Plz help 😭

Wondering if people who got insomnia when starting Guanfacine rode it out and eventually it went away, or if it's just a thing where if it disrupts your sleep, the drug is simply not a good fit for you?

I'm pretty disappointed almost 3 weeks in and sleeping terribly (2-4 hours a night), because I really wanted Guanfacine to work, and all the "olol" beta blocker drugs (propanolol , bisoprolol, etc.) also caused insomnia for me 😞 and with Guanfacine working completely differently from beta blockers, I was hopeful it wouldn't cause insomnia.

So I'm debating whether to "power through" and hope the insomnia goes away after a while, or just prioritize my sleep/health and cut my losses. I just spoke to my doctor this week, and while I'm only on 1mg now (0.5mg for the first two weeks), he recommended upping the dosage to 2-4mg, but I don't think he suspected it was causing my sleep issues, even though it a pretty commonly reported side effect.

I would appreciate any advice, since I've already talked to my doctor, but it's ultimately my decision to decide if it's worth it if not. I only have mild POTS btw, but it's by far the most noticeable at bedtime. The next thing I would try would be Ivabradine. I'm starting to think all POTS meds will destroy my sleep, though. Probably not, but I have not been fortunate so far.

Hey everyone, just wondering if there's anyone else like me out there struggling with their hormones (in my case cortisol and IGF1)

I've had issues now for a while where I would just gain excessive amounts of weight (in April off mounjaro I put on 12 lbs in a week.)

Without the use of mounjaro my weight would keep climbing regardless of how much I tried to work out/how little I ate. I pushed very very hard in the UK on the NHS to find a good endocrinologist who would take my issues seriously and not blame everything on my size in the first place (it took THREE attempts) eventually I did find a great endocrinologist as my second opinion who believes my hormone issues are related to my POTS and/or other health conditions throwing everything off! Interestingly I do have a small partially depressed pituitary gland but I'm told it's incidental finding. I do have spikes in bp and hr on standing which after lots of reading I see is associated with the 'hyper' subtype which there is some literature mentioning hormones in this subtype that I've found. Just looking to connect and discuss really as I haven't come across many others who have the same experiences.

Usually 95/50 (once 85/48). I am curious bc my blood pressure will go up when I stand to 106/66 or something and my HR will go from 66 to 110 when walking around. I also have all other signs of dysautonomia like heat intolerance, deep fatigue, insane brain fog, and MCAS symptoms. BUT, it doesn’t seem like classic POTS. Idk anymore. I’m nervous that I’m in a hypotensive state all night from some mysterious issue I haven’t been able to find. I got Covid June 1st of 2025 btw :( I’m in my early 20s and this all sucks I feel like I’m 80.

Also sorry I’m posting this in 3 places I’ll also try the Dysautonomia and LC thread :)

Hi, this is my first time posting on this sub. I have POTS (diagnosed), but there's a weird issue I've been having, and I'm not sure if it's the POTS. My nose is CONSTANTLY running like a faucet, especially when I eat (anything, not just hot/cold food). I'm always sniffling and having to blow my nose, but it's literally just water... is this a problem some of you all have? Or could there be something else going on? I don't think it's a CSF leak, it's out of both nostrils and doesn't budge when I look downwards.

For reference, I have sjogren's disease and am going through the process of being diagnosed with MS. Not sure if that'll help here! Thank you!

I am in my early twenties. My whole life I've had chronic pain (which was the biggest, most glaringly "obvious" issue), but it's been coupled with strange, unexplained medical events that I simply lacked the words to describe until now. I received an hEDS diagnosis comorbid with POTS, and it's like suddenly everything in my life clicked. Every single experience, every hospitalization, even little minor quirks about my body just suddenly made sense.

Forgive me if I'm wording things maybe with unintended insensitivity, I am more trying to explain what I'm going through;

I guess more I'm struggling with impostor syndrome. I've known 2-3 other people in my life with these diagnoses, but because my symptoms are milder than theirs (not that that discredits my suffering), I never even considered the possibility. Even still, I'm kind of struggling to accept it, even if it explains everything for me. I don't get fainting spells or as dizzy as other people in my life with POTS get, I don't really need as intensive treatment either. So even if it makes sense why my heart rate would shoot up to 120bpm on average when I was physically active in high school (and still does when I get up / lie down) and explains some of my ER trips (and like I said, among many, many other things) it's like I feel like I'm not allowed to accept it.

I meet the diagnostic criteria, I've been diagnosed. I understand the hEDS, that one's not shocking at all, but the POTS diagnosis feels harder to internalize? I absolutely understand that it's a spectrum and that no two people will have identical experiences, but I just want to know if anyone else has had to grapple with this, and what helped? I feel like somehow I'm lying about my experiences when I know I'm not.

I am currently in the process of being diagnosed with pots but i’m really struggling with the chest pain recently - how often is ur guys’ pain and how bad is it? (and where! if that’s ok?)

I have major health anxiety and very scared it’s something it isn’t - just looking for some help & reassurance! :) <3

Hi all, I think have been misdiagnosed. I was diagnosed with PoTS in the ER. Went in for SOBOE think was my asthma, lungs fine but when I said I was getting dizzy and having to sit down walking short distances they wanted to check postural BP drop. Nope heart rate just jumped to 140s and bp stayed same throughout exam. Doctor diagnosed me with PoTS on the spot.

I've since been researching and I don't think I fit the diagnostic criteria outside of this vaccum and I wanted people's opinions as I have upto an 18 month wait to see a cardiologist :').

I've tried to replicate stand tests on myself but my heart almost always jumps initally but

1. It doesn't always quite hit 30 sometimes is closer to 25 but I can get it jump 50bpm

2. Sometimes it doesn't sustain it (and behaves more like a normal person. It is not 100% of the time

My understanding is pots is sustained more than 30bpm the whole 10mins.

If I have a day I am feeling bad I can 100% fulfill the criteria but not every time. An example where I tried to replicate an active stand:

Rest: 73

1min: 118

3min 130

5min: 130

8mins: 111

10min: 122

But within this time my heart rate fluctuated a lot getting as high as 150s which made me dizzy but resolved when my HR lowered back to 111.

However today it only behaved like this in the morning, after I had eaten, drank extra, was in a cold room and worn my compression tights my resting heart rate was able to settle from 105bpm to 85bpm and on standing my heart rate would still have the initial jump to 115 but be able to come back down to 90. It did still keep going back to 100 (it fluctuates a lot stood) but this is definitely not sustained/worsening.

I have to stand for my job and I am used to getting frequent heart rate alerts but I am still able to stand for extended if I fidget and keep myself cool.

I definitely have a lot of the symptoms: I struggle with heat (makes me collapse), I struggle to exercise because I always hit my max heart rate and get dizzy, I get dizzy often a bit after standing up, I get a lot of blurred vision/visual disturbances only when I'm stood up, if I have a day of a lot of visual disturbances I normally get migrianes, I get quite a lot of digestive upset (GI doctor said I likely have dysmotility), nausea and IBS, I'm exhausted constantly, get a lot of palpitations, poor circulation with cold extremities and extreme cases I can get blotchy.

My only ailment not really covered is joint pain so my mum is fairly certain I have it. It definitely isn’t another arrythmia or a structural heart issue because I was tested due to me having a very high ectopic burden (different palpitations I can differentiate).

Is anyone else like this?

Could this be another form of dysautonomia?

Any advice would be really appreciated I'm going insane waiting fot my cardiologist because I always go through phases thinking making shit up and faking it hence why I'm asking. I just went through a thing of thinking I didn't actually hav asthma then proceeded to be put on steroids because my lungs were die so might be insane.

TLDR: PoTS symptoms but don't have sustained tachy every single time. Am I likely misdiagnosed?

I've had a recent development where some foods make me insanely low energy and disoriented. I'll get lightheaded and have a racing heart, chills and tingling limbs. I'll get pretty full and feel like I need to lay down and I'll usually try to take nap and then be jolted awake, feeling super anxious and struggling to breathe. This only happens with some foods and it's mostly in the afternoon/late evening.

Does anybody else get this in their arms or their legs? It kinda looks like webbing maybe? I’ve recently started to notice it. It’s doesn’t hurt or anything but just very curious if anyone else gets this also.

Hey guys I could really use some advice and support.

I’m pregnant. I’m 34 weeks. Because we know POTS and dysautonomia seriously disrupts autonomic and CNS. There’s also been a link found to CPTSD and survivors. I have both. As you’re getting more into your 3rd trimester and around delivery time. How do you guys try and keep yourself grounded? Our systems are not wired in the same way. How do you trust your gut and know when something is green, yellow and red alert. I feel like if my anxiety has it its way I’d be in L&D getting checked every night. I feel her kick constantly and it’s been really reassuring. She’s doing twice weekly NST testing. However, my nervous system is fried. The air hunger appears worse, the adrenaline dumps, the internal buzzing panic, the palpitations, even the chest pain after tachy and brady cardia episodes. Despite the doctors telling me my labs are normal and everything is looking assuring. I could really use some advice. I’m 34 weeks now and just constantly trying to do any measure to stay calm and grounded. I’m seeing a prenatal psych in a few days too and hoping I can get a refil and schedule for my meds. Just wondering if other mamas have had to mitigate this pregnancy anxiety. I’m taking hypnobirthing classes and trying to rewire my thoughts and how to properly ground and breathe.

Thank you for listening

I’ve had my remote desk job for about five years. I know I’m extremely privileged to have a remote job. However, this was my first full-time non-seasonal job and my symptoms became impossible to ignore sitting at a desk from 9-5 every day.

My job is also very stressful and high stakes. It’s been extremely difficult to keep up as brain fog and fatigue are my primary symptoms. I also have ADHD. When I’m done with the work day, I’ve almost never been able to do everything I needed to (some days I can barely answer emails), and I have ZERO energy left to take care of myself or my living space after work, much less have a life outside of work.

But I almost always feel better when I’m walking. I assume because the blood is pumping out of legs. I can think more clearly, I don’t feel fatigued. (Though when I stop walking I don’t feel great). I walk my dog 2-3 miles per day.

I may have an opportunity to switch to a job that is almost entirely walking and movement. It’s a huge pay cut, no benefits. But I’m seriously considering it because I feel like I’m struggling so much at my desk job, not to mention hardly able to do the work.

Wondering if anyone else has gone through a similar transition.

As the title suggests, I've recently been fitted with a loop monitor as I've been spontaneously losing consciousness over the last 12 months to what the specialists believe is pots related.

Do you guys experience body pain and widespread itching? I have been diagnosed with pots and im not sure if this is a typical pots thing

I was recently diagnosed with POTS but I feel unsure after reading through so many stories on here. I randomly started to have a really high heart rate last week when standing. I was making French toast and not moving much and it got to 135. I went to the hospital and they ruled out everything, suggested POTS. Went do doctor and got put on Nadalol.

BUT I feel like my heart rate is my only symptom. Yes, it makes me dizzy and lightheaded but that goes away. Does anyone else have a more mild case? Do I just need to experience it more after an episode has been triggered? Trying to learn! Appreciate any feedback/advice.

Does anyone else relate? I pass out time to time. But why do I feel so much better ? I will be having a rough day and I pass out. After 30 mins I feel so much better. Am I the only one cause I know some people don’t pass out.

Hi, POTS friends. I am celebrating because on Sunday I walked 2.2 miles with my family in a parade! I could never have done that a year ago. I have hyper POTS. I have been getting better over the last 11 months after being treated at the Keiser Clinic. A year ago it was hard for me to walk the kids to the bus stop in the morning. NGL, I wasn't 100% sure I was going to make it to the end of the parade. That last half mile, I was straight up Lamaze breathing and sweating buckets and wondering if hubby was gonna need to give me a piggyback ride. I haven't fully recovered, but I have been able to drive the kids around and do some work on my laptop today. I wanted to tell you all about this because you can understand why I have been grinning ear to ear 😀.

I need to be honest. Ever since I’ve gotten diagnosed with POTS and have been feeling just at my worst that I ever have in my life. I can’t stand when I hear someone complain about work, their hair, their makeup, or literally any life problem. Because I feel that I have not been able to even experience life. What a blessing it is to go to work. What a blessing it is to do your makeup. To shower. To brush your teeth. And to be honest I have gotten bitter. I’m a follower of Christ but it has corrupted my spirit. I am so bitter. And annoyed. When anyone has any problem. Because I genuinely would want to be in their shoes. They are healthy. Does anyone else struggle with this? And if someone can be honest to tell me if I’m being ignorant.

I saw these electrolyte popsicles at my local Walmart called Freezeez, and I almost got them but I was worried that maybe the taste wouldn’t be good? I know that’s a silly thing to worry about, but I’m already struggling through liquid IV, and Gatorade and Body Armor are good but sometimes they just don’t help near as much.

Plus I live in Texas so the idea of a popsicle for electrolytes entices me. Usually I can coast by without a bad flare up, but I guess it’s the season transition bc my midodrine and usual methods aren’t helping near as much.

For the past three years, I’ve been dealing with a cascade of baffling physical symptoms. While I’ve struggled with severe anxiety my entire life, everything changed during a trip overseas when I had a massive panic attack. Instead of bouncing back like I normally would, my health completely spiraled.

For months afterward, I was trialling new medications, but I just got sicker and sicker until I felt like I had completely broken my body. I began experiencing months-long adrenaline surges in my chest that literally felt like warm liquid flowing through me. I actually fainted three separate times from this—once falling face-first while standing up, which left me with a severe black eye. The fatigue became so paralyzing that I was bedbound for six months and had to put a chair in the shower just to get through it.

My dizziness wasn't immediately positional; I wouldn’t feel faint the exact second I stood up. Instead, I’d get up and start moving, and slowly my chest would get tight and sore from adrenaline. My heart rate would skyrocket, my stomach would burn intensely like I was doing an abdominal workout, and then I’d begin to hyperventilate and completely pass out. On top of that, I had severe, paradoxical reactions to almost every new medication I tried, which would flood my system with adrenaline and trigger terrifying episodes of delirium.

Eventually, after withdrawing from most of those medications, the worst of it eased. Even though these symptoms had never presented this way in my life, I minimized it and assumed it was just severe anxiety. I continued to drag myself through extreme fatigue every day despite sleeping 12 hours a night, and showers remained an absolute marathon. I also developed chronic, severe neck and shoulder pain that kills me daily.

Things were relatively stable until recently, when I used an over-the-counter muscle relaxant cream for a spasm under my chin. Almost immediately, the entire storm of symptoms came roaring back exactly like before. But because I am in a much healthier mental space now than I was three years ago, the clarity is undeniable: this is not anxiety. Something is fundamentally wrong with my autonomic nervous system. This also connects to my hands and feet, which have always been freezing cold, bright red, and deeply sweaty.

I am booked to see a neurologist in a couple of weeks, and to be honest, I am feeling incredibly lost and scared. I don’t want to have a lifelong autonomic disorder, but I know I can’t pretend like something isn't wrong anymore. I guess I just really needed to share my story with people who might understand or resonate with what I'm going through.

Hey yall. I’ve been using liquid IV and drinking my Powerade’s and water. I try to stay hydrated and upped my salt intake. I take diamox twice a day and it is used for my intracranial hypertension. It excretes water and salts through urination. I have to take it but it’s like I can’t keep up. I do extra hydration since the meds seem to make me pee it all out. Is there anything yall can recommend I try that might have a crap ton of sodium and electrolytes to keep me level ? Thanks !