I was wondering if anyone has any suggestions for outlets/hobbies that help release big emotions (mainly anger) that are NOT physical (or can accommodate). I’m 95% bed ridden, entirely housebound besides appointments and occasional outings a few times a year if I’m lucky. I’m a wheelchair user. I have POTS, ME/CFS, MCAS, hEDS to name a few. 24 years old. I would LOVE to run it out or work it out, but unfortunately that’s not available to me. So- what do you guys do when the anger is super big, but you can’t physically release it? (I already meditate and go to therapy and they help a tiny bit but my anger about my situation feels so big)

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.

I start highschool in three weeks and im heavily confused on what i will do for pe. In 8th grade when the highschool consunlers showed up to my school i told them "i have health issues i cannot do pe" and they responded with "you need to have a pe class for graduration credits. So i stared at the paper where i was picking classes and i pankiacked and picked show chior. Problem is i have sevre intolerance to physical activity of any kind and its dangerous for me due to risk of passing out, seziures, and knee sublaxations. Im going to get a doctors note but I dont know how seriously the school will take it. Does anyone have any advice?

I feel like i can always feel my heartbeat and its always somewhere weird like the side of my elbow or my feet or something. And sometimes the heartbeat is so strong too. Its currently in my legs right now and i can feel it so hard in my lower legs by my feet. Im assuming its from blood pooling or something?

I was recently diagnosed with POTS after developing it when I came off an SSRI, and my life has come to a complete stop.
I keep turning down opportunities to meet or date people because even the smallest amount of nervousness makes my heart rate shoot up. It’s embarrassing, and sometimes it triggers a panic attack.
Are any of you still able to date and have relationships while dealing with this? How do you handle first dates and explain your condition to someone new? I’m scared POTS has taken this part of my life away too.

Is there anyone that’s been diagnosed with me/cfs but turns out to be severe pots all along ?

I’ve had EDS all my life but got COVID and been bedbound ever since, I’m wondering if it really is me/cfs because I have PEM but my worst symptoms are : brain fog and orthostatic intolerance.

Edit: please don't take it like I am saying this is a reflection of how I feel about others. This is a reflection of myself and how I think towards myself based off of being dismissed for years, and I want to know how common my situation is. I am over the moon when other disabled people get the help they deserve.

I am undiagnosed, but my condition is being investigated and we have ruled out any chance of heart issues, blood issues, etc. I have full conviction that I have POTS.

I was in public having an appointment. I'm 21f, but I am so physically exhausted. I know how tired I get but I am poor and wanted to save my little money. I thought I could walk; I also have a fear of deconditioning. Anyway, I successfully arrived whilst tired, but upon standing still, I felt unstable and asked if I could crouch. I ended up sitting on the ground and felt terrible. I've been living with the symptoms but they've been worse for the past few months, but I've slowly realised that I have had them for years, especially the main ones like fatigue, which I have actively sought help with for the past 3+ years.

The staff kindly got me a chair and pushed my appointment forward without me asking so I could go home, and I started crying because I felt bad for making a scene. They were so sweet for understanding, however I feel immense guilt over inconveniencing others as people have made me feel bad for asking for help, mentally or physically, so I have been gaslighting myself into thinking I am okay for years.

A man in the centre kindly helped me call my mum and sweetly watched me until she picked me up; he made sure she came right to the place as I was unsteady on my feet. He kept reassuring me that this happens all the time. People being sweet to me throws me off and makes me so teary. I can handle people being mean but I start bawling when strangers go out of their way to be kind. I hope nothing but good for the sweetheart who helped me out, all the staff were lovely. I know if my family were around, certain members would've berated me for 'attention seeking'. They have had zero care regarding my health.

I just ordered this Essense nose ring thing from Amazon (hoping it would help with my nausea and because i work in a nursing home, iykyk 🫪) and it actually helps! I usually get really nauseous after eating or walking around even and i thought i would try it and its working well for me! just thought id spread the word if anyone is interested hahah

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.

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/

22M, This is my least favorite symptom out of every pots symptom I have, I get super nauseous before bed 2-3 times a week and almost always have a bowel movement along with it, it feels like a rollercoaster/butterflies sensation in stomach and sometimes my throat, I have IBS-C, no gastroparesis and mild GERD but this sensation feels like it's not connected to any of those but maybe just dysautonomia, I haven't vomited yet but sometimes I get very close. Zofran only works half the time along with ginger tea, gaviscon, alcohol wipes, and wrist bands I can sometimes control it but I have emetophobia so I almost always start panicking. I can have zero other pots symptoms along with it as well. I'm eating normally and having normal bowel movements as well thanks to miralax. Any tips?

Sometimes I’ll be having a really good day at work. My heart is cooperating, I feel like I can stand longer than I usually do so I put in more effort and exert more physical energy. However, whenever I get home I always feel sick/flu like symptoms. I wish I could feel that this would happen before but sometimes I don’t even realize I’ve overworked myself until its too late.
Does anyone else suffer from situations like this?

How are you doing, are you improving with time, what helped you?

I feel pretty isolated as a man with this condition.

Im 21(f) with hyperpots diagnosis and informal HEDs diagnosis.

I saw a new internal med dr today after three years without one. It was my first appointment with them and idk how I feel about it😵‍💫

They looked over my history but my old internal med dr never sent over my records which was a frustration. This dr seemed very skeptical of my hyperpots cuz when we did vitals nothing really spiked that much but I was symptomatic. He literally caught me when I nearly toppled over upon standing, so embarrassing!

I did take my meds before the appointment (10mg Propranolol) so it makes sense. My main goal was to seek a dose increase since I've been on the 10mg twice daily for five years. It's not really effective as it used to be and my symptoms are draining me so much; I wanna be functioning when I start my internship in September.

ANYWHO i got the increase of 20mg Propranolol twice daily so woohoo! Dr mentioned waist compression to help with symptoms such as a faja. Has anyone got any good ones that aren't a bazillion dollars? I'm a broke uni student. ✌️😔

I was just prescribed this today for my high heart rate (and inconsistent Afib) as well as migraines. I haven’t seen anyone else on this 3x a day so I’m wondering if this is normal? I’m honestly nervous to take the dose. I suffer also from anxiety which could be my high HR. I guess I just need some reassurance 😭

​

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

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

**Warning: Long**

I got my POTS diagnosis today after months of searching. It's bittersweet. This is gonna be long, but I feel like I need to get my frustrations just off of my chest. Maybe it will help someone else feel like they aren't alone too, if i'm fortunate. Thank you to those that take time to read and even more so if you wish to reply.

I have diagnosed anxiety/c-ptsd (parental death + medical trauma), major depression, adhd neuropathy in my left leg, suspect hEDS and now there's the POTS. It all started with constipation that was worse than usual. I have what's called a tortuous colon, so it's larger than it should be for my body and it takes longer for me to digest. I noticed some severity begin and my medical trauma causes me to be hyper vigilant when I notice something new or different. When you've been surrounded by people dying from cancer always telling you they wish they didn't put off going to the doctor and they regret shrugging things off or being optimistic... you tend to overcompensate.

Anyway.. with the uptick in early diagnosed colorectal cancer and with me approaching 40 (i lost my mother when she was 47) I decided because of my history that I would get an early colonoscopy. I was reading about prepping for it, and suddenly my throat closed and my chest got tight. I lost all feeling in my hands, my face turned white as a sheet, and i ran upstairs to have my partner hold my hands.

A panic attack caused by sudden bodily symptoms. I have had many panic attacks before so I thought it was normal at first. But then, I woke up at 4-5am drenched in sweat. Panic again. I calmed myself and took my rescue med and it didn't touch the feeling. Spoke with my PCP and my SSRI was increased. Every single day after this I was having these attacks. Sometimes back to back. This had never happened to me in my life, even unmedicated. He prescribed me Propranolol and that helped the racing heart but I still had so much fatigue and brain fog that I could barely think straight. I could feel the adrenaline surging but my HR was blocked from going into tachycardia.

I told him it wasn't helping after doubling my dose. He asked if I was open to trying something and he said try pepcid (Famotidine) and it actually did help the panic moments to start to go away. Then, it was colonoscopy time. I noticed during prep that these symptoms like my lungs feeling inflamed, wheezing, dizziness, palpitations etc started subsiding after I couldn't eat anything. UNTIL I had 2 bowls of chicken broth (high in histamine) and everything came rushing back.

I had been keeping a diary since doctors are supposed to love those and took note. colonoscopy had a polyp and it was benign and removed. after, i decided i wanted to look into dysautonomia since all of my symptoms together shifted and were systemic and body-wide. Boy, did I not realize what a can of worms I opened. I first went to an allergist and got poked and stuck for allergic reactions and I did the whole 5-hIAA, catecholamine, n-methylhistamine 24 hr urine tests. Everything was normal. She ended up saying most of my symptoms were caused by acid reflux.. even though prior to seeing the test results, she said it sounded like I was producing too much histamine.

I asked in tears what to do because a stronger antacid wasn't going to help me. She said she didn't know and talk to my PCP. No direction, no advice, nothing. she was yelling at me. I told her that she failed me and I hung up. When i brought her the diary that I kept for 2 months, she held up her hand like she didn't even want to look at it and I knew from then that she didn't want to hear what I had to say. GERD, Vocal chord dysfunction.

So then I went to the cardiologist. The simple lay to sit to stand for a minute in the office gave me a 25bpm increase to which he said wasn't alarming, but he was concerned about a fall I had when i blacked out after i got up from bed. I described all the symptoms and he ordered an echocardiogram, a CAM Monitor for a week, and then the dreaded tilt table.

I went from a resting rate of 77 to 150. My entire body trembled. I wanted to cry, I wanted to pass out, my legs felt like they could burst but the nurses didn't stop it and i thought that if I beared the entire length of the test that maybe someone would believe me. My own PCP had started to tell me a week or two before that everything was likely Psychosomatic. But it wasn't. Follow up call today and the cardiologist confirmed POTS. Im so relieved that i can be believed now with some of my symptoms... but i still have Histamine Intolerance that's unaddressed and an allergist that told me MCAS hysteria is caused by social media disinformation and is also life threatening and i do not have it.

She even went as far as to have her office call me when she saw the catecholamine blood labs ordered by my cardiologist to specifically tell me i already had those labs and it was a waste of money and time. I verified with my cardiologist and he asked me if I took the labs standing and i said no. he followed up with, "then it's medically necessary. for certain subtypes of pots, catecholamine levels will go up after standing" which I didn't know. how can this allergist be so up her own ass that she calls when I'm seeing someone else to discourage further testing?

But yeah.. I want to try to figure out the histamine intolerance but i'm not sure where to go now. and it's not like I have infinite money or time to keep going from specialist to specialist. Just the current appointments and testing that i've done so far has drained all of my PTO and we dont have sick days at my company. I feel like I need infinite naps and some therapy after all of this. hahaha

Do you think I should persue looking into hEDS or just do the diet switch and hope for the best? What would ya'll do in my situation? If you're still reading this, thank you for sticking around.

I'm a 24F. Suspected HyperPOTS.

So I've had a HRV averaging around 20 for over a year. It is consistent every day, so not varying much from the 20s range. The highest it's ever recorded was 30, but that was an outlier.

I wear a Fitbit. All my other vitals are normal from what I'm aware, just a stupidly high heart rate and I'm on atenolol for that.

I'm aware that POTS can cause low HRV, but apparently this is really bad according to articles I'm reading?? Some people even told me that 20 is not even possible, let alone for someone my age.

Is this normal? Should I mention it to my doctor?

I’ve been diagnosed with POTS for almost a year and have always been on the lower end of the spectrum. Like 60-70 in the mornings getting up for the first time then 30-40 the rest of the day. My highest has been maybe 170-180 but usually it’s around 100-120 on a regular day. It feels like POTS isn’t what’s actually wrong with me, I feel my heart all day, everyday but it’s not the main symptom I get daily. I struggle hardest with breathing and physical activity, I’m almost never breathing “correctly” and it feels like a brick on my airways. My chest always hurts, like constantly and occasionally like a few times a week it’s a sudden stabbing pain that just refuses to leave. Like all the symptoms apply but I feel like I’m on the line of this diagnosis and it being wrong. I have gone into syncope three times very briefly but usually I don’t get pre-syncope or flares unless I’m out in a the sun or extremely hot (ex: showers). I don’t know, it doesn’t feel validating even though I know if it was any worse I’d be more limited. I constantly feel like I’m shaking and visibly it’s so little most of the time when I ask people to look I seem insane. I get little twitches in my face, neck and fingers that go completely against what I’m trying to do in the moment. Sometimes in my legs/feet as well. I want to ask my doctor but she genuinely seems like she doesn’t care and is just trying to do her job, but maybe I’m reading her wrong. I feel dramatic but I can’t change providers. Is there any other reason I could be feeling like this without it being POTS?

Has anyone else tried yoga sculpt classes? The other day I tried a new workout class labeled as a “strength class” and it was basically a yoga sculpt class. It was super hard in general but it was also super hot that day with minimal ventilation in the room lol. My HR was at 160-180 for half of the hour long work out. I felt mostly fine throughout class but I could tell I was pushing myself so I would modify certain things to not overdo it and make my HR too high. I felt fine after class but I did have a slight headache the next day (but it could’ve been because I didn’t sleep that great either). I usually take mat pilates classes like 2-3x a week and my HR average throughout class is usually 130-140. My body got used to mat pilates and can handle it now but I definitely had to get my body to learn to tolerate it. So I guess my question is do you think it’s bad to do a work out where your HR is high for a lot of the time? Or will my body eventually learn to tolerate it as well?

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.

My fiance is extremely ill (POTS, MCAS, CSF leak, ME/CFS, probably others) and in a bad flare. We’re waiting for various potentially helpful treatments over the next few months but in the meantime she’s fully bedbound and miserable. One of her few comforts is Delta 8 but she recently realized that it interacts with Ivabradine and has stopped taking it. Sublingual and inhaled aren’t really options for her.

Does anyone on Ivabradine for POTS also take edible THC or delta 8? If so, how do you time them to avoid liver strain?

Hi, everyone! I first developed POTS at the end of 2024, I’d had COVID twice and was just recovering from bronchitis when I began having symptoms (palpitations, dizziness, fatigue, etc.).

The palpitations went away, but honestly ever since then I’ve still dealt with many of the symptoms, especially the high heart rate and all the negative effects that come with that. While some months I feel better than others, I am definitely prone to flare ups, mostly if it’s really hot out or during times of high stress.

My most recent flare up has been pretty bad and quite long — I’d say at least since the end of June. It’s been accompanied by shortness of breath and awful anxiety/near panic attacks. I was supposed to have my period at the end of June and I missed it for the first time in my life (I’m not pregnant). I guess I chalked it up to high cortisol levels from anxiety/stress plus it was a hectic time at work. But now I haven’t had a period in 50 days and I feel like that could be making my POTS symptoms worse.

So a couple of questions — like the title says, have POTS flare ups ever caused you to miss a period? And do you often feel like your symptoms are worse around your period with slight relief once you start or at least once your cycle is over?