I haven't read this article yet from May 2026, but just came across it. If I get the chance, I'll have a look and pull ut some highlights.

https://onlinelibrary.wiley.com/doi/10.1111/joim.70104

Abstract

Background

Postural orthostatic tachycardia syndrome (POTS) is a chronic form of orthostatic intolerance that primarily affects female patients. There are scarce data evaluating the long-term outcomes in POTS.

Objectives

This study sought to evaluate the long-term impacts of POTS over multiple decades in adult patients.

Methods

Past research participants at the VUMC Autonomic Dysfunction Center Research Unit (symptomatic ≥10 years) were recruited to participate in the study. A custom survey was administered at one time point. Participants were grouped as IMPROVED or NOT IMPROVED based on symptom course over time. Continuous data are reported as median (25th, 75th).

Results

Patients with POTS (n = 44; 98% female) were included in the analysis (62% response rate). Patient age at the time of survey was 48 (38, 54) years, with 23 (15, 27) years from POTS symptom onset, and 17 (12, 24) years from POTS diagnosis. Since diagnosis, symptoms completely resolved in 2%, improved in 46%, worsened in 25%, were unchanged in 11%, and demonstrated a variable symptom course in 16%. Patients who were NOT IMPROVED were more likely than those IMPROVED to have neuropathy, gastroparesis, and overactive bladder symptoms.

Conclusions

In a cohort of adult patients with POTS who received care at a national referral center for autonomic disorders, almost half reported their POTS symptoms as improved 10 or more years after symptom onset. Most patients with POTS experienced ongoing symptoms for many years after diagnosis.

This might be common knowledge or common sense to some, but be careful which cold and flu medication you take!! I just found out today that most OTC medication contains pseudoephedrine and/or phenylephrine which can greatly exacerbate symptoms. Obviously it's not the case for everyone but something to consider

I had no idea and only found out today after I've been taking them and have had a serious flare up which has made me feel even more ill.

Heres a source but there's lots of other info online:https://chronicallysalty.com/2018/06/12/got-a-cold-with-pots-5-tips-for-a-faster-recovery/

Did anyone experience heart rate fluctuation during their tilt table test?? I went from 95bpm resting to 120 when initially tilted and then it went to 130, 133, kept climbing to 146 and stayed up there for awhile but then went back down to 130s down to 116 but then it spiked again to 140s. It felt like it took ages.

I didn't pass out but I thought I was on the verge of it twice. I broke out in sweat, my chest just felt tight and on fire and my legs and feet felt like they could burst like water balloons. My entire body shook and trembled and I had tunnel vision almost the entire time. No nausea or vomiting though I still do not feel well today.

I was NOT expecting to get flooded with emotion. I held it back but I was on the verge of tears. Did any of you get emotional too? I was so embarrassed.

I cried last night and couldn't sleep. Like full on, I miss my mom cry. (I am 40 in 2 months and I lost her when I was 19 to lung cancer), did anyone else experience this? I felt a bit relieved that symptoms were reproduced during the test but I'm so nervous to hear back. I don't want all of this to be seen as psychosomatic as I've been told it was by a few doctors I've seen so far.

I just want to know what's wrong so I can treat. Even if it's not POTS. Did any of you do any particular care afterwards to feel okay again?

My life is falling apart. Honestly. There is no other way to describe it. And it's breaking me down to my very core.
6 months ago I got sick. Normal cold. Nothing wierd. Then I started getting these symptoms... 2 months after that I got another infection and boom. Severe POTS. I got fired and lost my dream job against discrimination laws but I was to broke and sick to go to court.

I lost my health, my ability to function, take care of myself, remember simple things and my body hurts so bad. I get exhausted by everything and stress kills me for days.

I got a specialist in april and was so happy as I'd her so much good things about her. But afterwards I've learned that she just made me sicker by making the wrong calls. And now I have to keep rebuilding myself from an even lower baseline which just feels like the weight
on the world on my shoulders. And I don't even know if I will ever be healthy again.

But this last three weeks... It's been absolutely killing me.

First we had a heatwave and my heat intolerance threw me into a horrible flare. My mom chose going to a concert over helping me while I laid in bed alone in my apartment in agony. My boyfriend was at work. He had to, I asked him to go. We are in bad debt because I got sick.

And then the great job my boyfriend got that was finally help fooled him. They lied and withheld information from him to make him quit his old job and take it because they had a staff emergency. So now he works a horrible schedule that is killing us both while he is looking for a new job. He can't quit until he found something new because we can't afford it. It feels like a prison.

Then something else happened with my family that sadly forced me to break contact with them for a while. So my biggest safety net while he was at work disappeared. But I had to and it hurts so bad.

And right before this happened my mom gave me the wrong medication by mistake and instead gave me one that was dangerous for me and I had to spend hours in a hospital and felt like shit for days afterwards.

And my bad neck got a thousand times worse and medical information even had to call an ambulance to check on me so I was in horrible pain for weeks without even being able to sit up most days. And the neck pain made my POTS a thousand times worse.

And when I finally got the call that I was gonna get a physical therapist for my neck after weeks of agony and that I got an appointment in just a few days I said right out "It feels like some good things are finally happening in my life again" AND LITERALLY less than 30 seconds later we heard our cat scream in agony and he got really really sick from out of nowhere so we had to take him to the vet in an emergency which cost us hundreds of euros while we are already broke. And it also broke me to see my baby hurt.

And today. I had a call with my doctor about my sick leave so I can have my small "paycheck". Which just about covers rent and a few of our bills. I missed calling with 10 days. And because of that they refused to do it and said they could only do one from today and start over. I told them about how sick I've been the last month and the horrible memory loss I suffer because of my illness that is also documented in my charts. But they refused to listen. And now I get no money for two months. Because thats how long a new "investigation" into sick leave takes over here. And In the end I lost hundreds of euros because of the 10 days that I will not get back. So this month we are not even sure if we have enough money for food.

I feel like I'm dying. All I do is cry nowadays. I see no sunlight. I don't know what to do.

​

And to add the cherry on top everything started at the same time my first day back to work after a vacation 🙃

Diagnosed with POTS in 2023 following a positive active stand test, but it never quite fit. On the active stand test I had a sudden drop in blood pressure at the 8-9 minute mark, where the test had to be halted to prevent syncope.

Anyway, I implemented lifestyle management recommendations (salt, fluid, compression) for 3 years and my symptoms have only worsened. I now have severe treatment resistant sinus tachycardia at rest, and have seen a huge functional decline. I put off going back to the cardiologist for too long, assuming I was to blame for not managing my symptoms well enough.

Well, I finally went back last week as it got unmanageable. As it turns out, I don't have POTS. Now it's thought that I have refractory NMH - neurally mediated hypotension, and potentially another underlying connective tissue disorder. Awaiting a full tilt table test to fully confirm it. The increase in heart rate has been confirmed to be secondary to BP drops, but not consistent with OH.

The treatment for refractory NMH is different to POTS after first line treatments fail, so I'm hopeful that I'll get some of my life back in the near future with the right treatment.

Just goes to show how important it is to seek a follow up if things change or your treatment isn't feeling as effective as it could be.

My mom is desperate to find a “specialist” for me. I keep explaining it’s most likely a scam when it comes to these clinics that want a few thousand up front.

So back in November I was trying to fall asleep and started having what I thought was a seizure. I went to the hospital and they had me in there 12 days giving me epilepsy medication thinking it was epilepsy, but it was making me worse (later research told me that epilepsy medication makes pots worse). While in the hospital my hr would go up to 180s then I would have seizure like episodes.

They gave me 3 eegs all negative so they ruled out epilepsy and tried to say it was psychogenic non epileptic seizures. I was then told by my nuerologist my hr got to high for it to be pnes, and he wanted me to go to a epilepsy monitoring unit. I went and after reviewing my hr, etc. During a seizure like episode he suggested dysautonomia/pots causing too much adrenaline which can cause seizure like episodes.

So I went to a Cardiologist who said he doubts I have pots without testing anything because according to him "an increased hr can't cause seizure like episodes". Well i still didn't care what he said and knew something was off so decided to try a pots clinic. Luckily there was one near by.

First meeting with the doctor there she said "I definitely believe you have pots, I want to order a tilt table test." They also had me do the poor man tilt table test there where they test ur hr sitting vs standing and my hr went from 70 to 130.

Fast forward to yesterday I do my tilt table test. They say they are gonna tilt me up for 30 minutes until I have symptoms and if I dont have any put me back down. So they test my hr and blood pressure laying down it was 108 (which is high for me laying down but I had like 4 hours of sleep and was a little nervous), my bp was like 140 also high for me.

They then tilt me up, I can feel my heart pounding so I tell them my heart is pounding and my hands and arms are cold, then I start shaking worse then I ever have before and I hear her say my name but can't respond. Next thing I remember im being put back down and the doctor just says "write pots confirmed, not a seizure its from lack of blood flow to the brain". She told me I beat the record for fastest diagnosis at only 30 seconds. They put me back down after only 30 seconds because my hr went up to 168, and I was shaking, and passed put, and my bp went to 155!

Here is the results:

Description of Procedure:

The patient was in the supine position for minutes with vital signs

recorded every 5 minutes, IV fluids infusing at KVO, and protective straps

in place x3. Upon arrival of physician, the patient was tilted to 70

degrees upright for 30 minutes with vital signs recorded every 2 minutes.

See details in hemodynamic report.

Symptom(s): Patient developed significant tachycardia with heart rate of

168 bpm after tilt. Developed symptom of dizziness, palpitation,

seizure-like activity with whole body shaking, numbness in both arms and

then had syncope. Heart rate returned to normal within few minutes when

patient was brought to supine position

Conclusion/Recommendations:

Postural Orthostatic Tachycardia: symptoms of orthostatic intolerance

accompanied by sustained elevation in heart rate (>30 BPM over baseline)

with no significant decline in blood pressure.

For those who take ivabradine twice a day and take their first dose at 8 a.m., what time do you take your second dose? My tachycardia starts coming back after only a few hours.

I was diagnosed with POTS and GERD in the emergency room 3 years ago. The doctor didn’t write it down and my Mom gaslit everyone into thinking that I was completely normal and healthy. My symptoms have been flaring up. I get nauseous easily, I keep fainting after getting up, I got random anxiety attacks when I was in Florida, I throw up stomach acid, and I sleep like 15 hours a day. There’s no food in the house, he acts like it’s a chore to buy me anything other than dinner. Breakfast and lunch items run out fast, and he blames it on me “eating too much” despite me losing over ten pounds in around two months. I’ve been trying to get a diagnosis again but none of the doctors believe me and swear on me getting an H.Pylori test or blaming it on my low iron. I’m tired.

since there has been an obvious rise with POTS (post covid) i’m PRAYING they will research ways to get rid of blood pooling..something that can make the veins tighten to circulate it correctly. i don’t want to have to constantly wear compression socks, and IM TIRED OF WALKING AROUND PURPLE!!!!!!!! i look like a gross alien

So I thought I couldn't get pregnant due to my PCOS just wanted to have fun one night and now I'm pregnant. With pots and pcos. I'm at about 8 weeks and feel like shit I've been to the emergency room twice for hydration. I can't keep my drink packets down. Any suggestions from someone experiencing at least 2 of these at once. Last night I couldn't even sleep due to my pots. I legit feel like I'm slowly dying. What are some suggestions for the nausea. The nausea is going to kill me I know it. Idk what to do. I can't function like this at all

Haven't posted here in years. Last time I did I was constantly stressed and anxious about everything to do with my body. I developed an unhealthy addiction to monitoring my heart on my apple watch, with the paranoid fear that one day out of nowhere, my meds would simply stop working. Well not anymore.

I've accomplished great strides in the past year. I moved myself and my furniture out of my apartment and back home after college, no issue. I conquered a ludicrous hike called the "dragons back" up in mammoth mountain; 1.5 miles of switch backs, low oxygen, and generally low cardio training, but i did it. Now i'm back in the gym, hitting legs and arms, and slowly introducing cardio via bike machines and swimming. For once in the last 5 years of having pots, I feel good, and excited. I have energy for once, and I'm finally not worrying about my heart, or what foods i can eat to mitigate flairs. I feel i function like a "normal" person again, granted, I do take medication.

To be honest, I'm not really sure what changed... It's almost as if over the course of a couple months a year ago, my body just started adapting, like it understood my condition and is doing its best to function despite it. Maybe it's remission? Not sure, don't think so, cuz i still need my meds, or i'll feel terrible. Maybe age? I was formally diagnosed at 20, now i'm 24. Honestly no clue, But it's improvement, and i'm so happy to finally have some of that.

I'd say my biggest help has been ivabradine. My biggest issue wasn't my heart racing during exertion, but that it would continue to race, for hours and hours after the fact. Taking out the trash when i was at my worst, would result in a resting rate of 105+ bpm for atleast 3 hours. It was horrible, but ivabradine really got my heart beating steady.

I'm curious on other peoples' progress. Did you feel your symptoms get better with age? Did it just randomly get better?

Hope everyone here is finding their peace and improving, even in the smallest of ways.

I'm getting used to being tired so well that I don't even notice that I shouldn't be. I'm disconnected from my body so that doesn't annoy me that much

But now I look sooooo tired. Anytime I look at the mirror I look like I didn't sleep in days. My skin looks bad and my dark circles are blackkkkk

I was fine with it before but even my eyes look tired, and they are the one thing keeping me from not liking my face

This is so frustrating

Why can't I just be sick without it having effect on how I look?

Thank you in advance ! 🫶🏻

I’ve been having weird symptoms the last few days and I keep thinking what if it’s an infection or something else but I have no fever when I check my temp yet still feel hot in the face or just my head area I don’t know how to explain. I also feel woozy not exactly dizzy but a little lightheaded. I also feel it when I lay down

Man, it’s been a few months since I’ve had a real proper surge and this one scared me quite a bit.

I felt it coming on as the sensation started to rise in my body. I took a couple swigs of orange juice, water, and electrolytes but it kept building.

Then I literally felt my heart go quiet and then BOOM. It’s show time.

Visibly shaking, panicking, sweating. I thought I was dying even though I’ve felt this before. It’s so freaking scary. My coworker notices and I say that I need to lay down.

45 mins later, the panic is gone but now I am FREEZING and shivering. It’s been over an hour now and I’m still so cold. The brain fog is setting in too. I’m slowly sipping on more water and electrolytes. I knew I shouldn’t have eaten that fucking bagel…

I have an hour long drive home. I hope I can make it…

Hello everybody I have pots and Health anxiety. I have an up coming trip to New York from Europe. I have very but insomnia when I travel and for this I got prescribed temazepam. I am always very scared to take any new medications previously I’ve used oxazepam and that worked quite well for me. I’m scared to take this sleeping medication because I’m always very scared when I have presyncope episodes usually I don’t faint. I just have a very bad presyncope with my pots and an unreal feeling. My anxiety for my upcoming trip is very bad as well, and I’m actually not excited to go that far from home in a country that is unknown. I’ve been having a flareup since April and I don’t know how to make it better.

Hello! I had my appendix and gallbladder removed last Thursday because I had an over reactive gallbladder. But I also have severe pots. I’ve been bed bound for a little over six months and just feel crappy. I’m on ivabradine and fludocortisone and midodrine. I’ve been feeling very out of it and dizzy more than usual but blamed it on just the hydrocodone the doctors gave me, but it’s been two days and I’m still feeling out of it. Almost like I’m falling, and trying to catch onto something. My nervous system is so messed up if someone talks to me I start getting nervous. Tremors are just terrible, and no it’s not my blood pressure because it was 112/70 which is really good for me since mine drops out. If anyone has went through this please comment!

Hello! I had my appendix and gallbladder removed last Thursday because I had an over reactive gallbladder. But I also have severe pots. I’ve been bed bound for a little over six months and just feel crappy. I’m on ivabradine and fludocortisone and midodrine. I’ve been feeling very out of it and dizzy more than usual but blamed it on just the hydrocodone the doctors gave me, but it’s been two days and I’m still feeling out of it. Almost like I’m falling, and trying to catch onto something. My nervous system is so messed up if someone talks to me I start getting nervous. Tremors are just terrible, and no it’s not my blood pressure because it was 112/70 which is really good for me since mine drops out. If anyone has went through this please comment!

I’m about to start it but worried for how it may affect my pots, I’m already so tired and worry this will make it worse, just wondered what others experiences were, many thanks

I had success getting mine for my POTS and was wondering if anyone else has done the same!

Hi everyone! I've learned so much from Reddit during my fight with Long Covid and wanted to see if y'all could help me figure out my path forward. As I feel like I have exhausted every option available to me, I am extremely grateful for any advice you may have!

Timeline:

- Covid Infections in Jan 2022 and April 2024

- Symptoms began 4 months after first infection, went away, and then came back Jan 2024. Disappeared again in April 2024, then reemerged in Jan 2026 and have stayed for the past 7 months

Symptoms:

- Dizziness, Nausea, Heart Palpitations, Ear Ringing, Ears feeling like I am underwater, Eye floaters, Vision following head movements, Fainting, Anxiety and overwhelming feeling of dread during "episodes", inability to drive, overwhelming feeling with sounds and lights, paleness, trembling, brain fog, breathlessness, inability to exercise or stand, heat intolerance, poor circulation

- I have episodes now about every day.

There two types of episodes

1. Heart racing episodes: I will get a chill down the back of my head/neck and then my heart will take off and have multiple "take offs" over the span of an hour. I will begin violently shaking for about an hour after these as well. These episodes leave me bedridden for about a week afterwards where more little episodes may occur.
2. Episodes where my heart rate stays normal (70-80s) but I will overall feel horrible (dizzy, lightheaded, nausea, ear clogged feeling, vision following head movements, stomach pain, paleness). These will last days if not weeks and make it near impossible to do things like drive, read, or even watch TV.

Doctors I have seen:

- Cardio, Endo, Rheum, POTS Specialist, Pulmonary, Sleep, Long Covid Specialist,

What I have tried:

- Tilt Table: Diagnosed with POTS and Vasovagal Syncope (passed out after 20 min)

- Propranolol 10 mg and Ivabradine 2.5 mg (only during heart racing episodes - I switched from Propranolol to Ivabradine since my BP is already pretty low)

- LDN: I was prescribed 1.5 mg last week (per Reddit, I have started with .3 mg in the mornings and plan to work my way up slowly)

- Inhalers: I was prescribed inhalers since my doctor found that I got Covid induced asthma

- Zyrtec: I started taking this once a day to try and combat the brain fog and dizziness

- Brain MRI: Normal

- Echo: Normal

- Microbiome Test: Normal

- Loads of bloodwork: Mainly normal with consistent low TSH, high C-Reactive protein, high IgA, high ESR, low MCHC

- I consume around 7,000 mg of sodium each day for POTS

- Lots of Naps

Things I want to look into:

- My TSH levels have always been very low and I am wondering if that could play a role

- My low blood pressure (this is something that runs in my family): I tried Midodrine to combat this but it started giving me "brain zaps" so I quit

- Anything y'all recommend

I have chased every avenue I can think of with no luck or improvement over the past 7 months. My Long Covid and POTS doctors seem to be stuck. I am currently on disability at my job since this illness has left me mainly bedridden and extremely discouraged. I will continue fighting each day but would love to hear if anyone has anything similar to my "episodes" and anything that has helped you! Thank you in advance and bless everyone fighting this! We are so strong!