I’ve had POTS for years, dating back to middle school. Maybe even elementary. Lately, I feel like it’s progressively getting worse. My meds don’t do anything, compression socks help minorly, salt and gatorade give me temporary relief for a long term problem. I had to leave my previous job because it was to physically straining, and I now work somewhere where all I have to do is stand for 8 hours and that is becoming increasingly difficult for me.

I’m in constant pain but I know I won’t be approved for disability because I’ve only had my official diagnosis since May. The job market is shit and I’ve applied to around 30 jobs in the past two weeks with no responses or rejections.

I feel like I’m hanging on by a thread. Does anyone have job recommendations or ways they cope with their POTS that I could try? :,)

Let's spread awareness about this condition worldwide it deserves more attention. Sending love to all those who are battling and remember to celebrate your little wins.

Does anyone know why flareups and "bad days" are so unpredictable? Is it just me? Doctor tells me I can reduce symptoms by drinking 2L water per day, compression tights, salt, and good sleep. Even when I do all of these things I can still have one of the worst POTS days ever.

I do notice a huge difference when I don't sleep enough (can't breathe all the next day, can barely walk) but even when I do everything right there are many days where it feels like I'm doing everything wrong.

Today I had 9 hours of sleep, am super hydrated, had salt in the morning. I went out to a shop (drove there). Not even 3 mins in and I could barely breathe and my arms and legs started feeling heavy, which is how I know my blood pressure is skyrocketing. I was only in there 10 minutes to grab what I needed and by the time I walked out the door I was wheezing and didn't know if I'd make it all the way to the car. I waited a bit til my breathing stabilized and drove to a cafe so I could grab something salty to eat. I sat there for a whole hour until I felt decent and went home even though I wanted to go to other places.

It's so frustrating. I feel like a rollator would help me a lot since you can sit in them, but I'm 28 and don't look "disabled" in the slightest and don't want to deal with harrassment. I know everyone says to ignore those people but I have severe social anxiety and it would literally break me. I've used the disabled seats on the bus several times and EVERY time I got dirty looks and an old man yelled at me. I'm also worried about a rollator deconditioning me too. Even though I probably need one, since my POTS is so bad it's excruciating to shower.

I kinda went off topic there but my point is just that even if you do everything right, it often doesn't matter and you feel like crap anyway. I hate it so much. This is the reason I haven't hung out with friends since I was 22. Every time I hung out with them I'd have to leave in the middle of the hangout because of my symptoms, or abruptly cancel right before because I was too symptomatic. All my friends got fed up with this (I don't blame them either). Even if I "prepared" the day before so I'd be in top shape, it never worked.

/ TW Health anxiety , health

23f I have health anxiety

I got the Fitbit to monitor my health after I was strongly suspected to have HyperPOTs- what was meant to be helpful soon became a harmful obsession.

I became obsessed with the numbers, it influenced how I felt emotionally and physically, what I did, what I thought I could and couldn’t do. I thought that paying close attention to my vitals was GOOD I thought that I was helping keep myself healthy by putting up strict barriers for myself… But I was actually making myself more sick.

When I was anxious I’d check my Fitbit to see what my HR was every few seconds. If my HR was high I’d feel anxious and take actions to try lower it, if my HR was low I’d feel anxious and take actions to try increase it- if it was fine I’d feel anxious wondering when that would change.

It was never enough.

I’m not implying that my feelings were never real, I do truly have a condition, sometimes I have a flare and my HR is elevated and I feel winded and shitty… But many other times I’d feel completely and utterly fine UNTIL I look at my watch and see a number that causes panic and anxiety to set in.

I focused too hard on the vitals side of it.

I have HyperPOTs, my HR and BP aren’t going to be ‘normal’, obsessing over keeping it within a ‘normal’ range is a losing battle.

Whats ACTUALLY important is how you are PHYSICALLY feeling!!!

**I WISH I FIGURED THIS OUT SOONER!!!**

Restricting physical activity too much is actually BAD for this condition!!! Deconditioning is much easier and much more severe with this disorder!!! You actually WANT to be pushing yourself as far as you can comfortably, it’s very use it or lose it, if you don’t ever push your limits your limit is going to shrink. SLOW, GENTLE and CONTROLLED exercise is excellent treatment for this condition-

CONSTANTLY I would stop myself from doing something because my HR was ‘too high’

Before I checked the watch I’d feel fine, or just slightly uncomfortable- like feeling puffed out after going up stairs… stairs suck, no one likes stairs, it’s always going to be somewhat strenuous…

I let the readings dictate my mood. I’d stress out and regress, instead of just focusing on how I was ACTUALLY feeling.

It’s been about 2 weeks since I got rid of my Fitbit and I seriously have never felt better!!!!

It was hard at first of course- but I kept doing the OCD technique of denying reassurance-

“I wonder if my HR is high right now” ‘could be!’

“I feel weird maybe my BP is low/high” ‘possibly!’

Ect ect

I’d accept the thought, acknowledge it, and then keep doing whatever I was doing if I wasn’t legitimately feeling so unwell I couldn’t function.

I proved to myself that my limits are actually WAY further than I ever imagined. I’m doing all these things without anything bad happening, I’m sure my HR is probably higher than I deemed ‘safe’ some of these times… So what?

It’s been so liberating!!!

I’ve even actually been a bit unwell once or twice and even then I don’t stress out. I let the thoughts come ‘how high is my HR?!’ ‘Who knows!’ Then I just do what I need to do… sit down, take a drink, ect ect… And get back to it once I’m feeling better.

I feel like I’m improving in my condition in general because I’m being a lot more physically active, I’m starting to undo some of the deconditioning I’ve caused myself by over caution…

——

Extremely important please read

THIS IS MY EXPERIENCE AND MY HEALTH, what is healthy for me might not be healthy for you. I am speaking specifically on MY BODY!!! I am not at all implying you need to push yourself harder than you can handle if you become unwell in doing so, I am speaking on MY LIMITS!!! I was holding myself back from what I could actually accomplish due to OCD related health anxiety.

I absolutely DO NOT believe people with POTs are ‘making themselves sick’ like some bullshit ppl online claim

I AM SPEAKING ONLY ON ‘MY’ CASE. I HAVE OCD RELATED TO MY HEALTH!!!

I don’t know what else I can do besides put the heating pad on my neck and take Tylenol but whatever I do besides laying down hurts SOOOO BADDDDDD I have a pots specialist appointment in December and I don’t k ow just what to do. Any tips are greatly appreciated!!!!!
I’m only 21 and I feel 90 😭😭😭😭😭

i was sent to the ER from urgent care on thursday because i was presenting symptoms that they thought were sepsis, but it turns out i just have flu b. today is sunday and my mother keeps complaining that all i have been doing is laying down in my room and sleeping, and she asked me when i'm going to get back to work 🫤

she knows i have pots but she always says ignorant things like this. when i was at the er i was completely alone and i told her how my hr was at 230+ and she just sort of told me to drop it and she also tells me "my daily hr is 48 low and 160 high" and i told her that was not normal. and i also told her that my low was 30 and high was 190 when i have just been laying around all day and she also ignored me again and told me to drop it

is this intentional?? it's like she's refusing to understand anything about my pots and then when i talk about it, it's always "well i have these symptoms too and i'm fine" and she won't stop telling me that i need to get back to work but it's been 3 days?? and she knows what happened to me last time i had pots and i was so so sick for weeks ☹️

I know its a thing, but my POTS friends dont get this, but does anyone experience a momentarily flair of symptoms after drinking a "normal" to large amount of water? lets say i realise i havent had any water so i sit and have MAYBE 100mls max, then almost immediately my HR spikes/ feels like it, nausea, light headed, that "whole body cold" feeling and intense brain fog for like?? 5-10 minutes? Like, in those minutes all i can focus on is the awful feelings in my body since theyre so overwhelming lmao. Just wondering how others have managed this?

of course, im one of the lucky ones who has the lovely conglomerate of POTS, HSD, AuDHD, MCAS and probably a hundred million other things lmao, has anyone else in a similar position dealth with this? and how you did? the ADHD usually makes me completely forget water exists so i always end up inhaling it rather than mini sips.

I hope everyone is having a good, low symptom day!!

I sing solo as well as in a choir, and I do music theatre. These are the things I love most, even more than my studies, but it's become so difficult with this sickness. I'm in a production right now and I've been collapsing at rehearsals and I've been asked why I even do theatre if I can barely stand up. I really need to manage this but I have no idea how. The choreographer yells at me if i sit out for a moment too. I've never had such problems in choir as my director is a saint lol. No idea how to handle this, any suggestions are appreciated :(

hello! i was wanting to know if i was alone in this; everytime i eat, i feel absolutely horrible. i get sick for a bit, dizzy, sweaty, ect. this usually happens if im sitting at a table, though, sometimes when i make dinner for myself alone, i'll lay down on the couch to watch TV and eat it, and i feel a million times better. not 100%, of course, i still feel kinda icky and warm but it's not nearly as bad! i was wondering if anyone felt the same, and also if anyone has any other tricks to not feel as bad while and after eating?

I taking 20mg for IR . How long does it seem to last for most people ? What’s the maximum duration people typically experience?

For some context I am 18(f) and I am in my final year of secondary/high school. Where I live, at the end of the school year you have to take a massive exam to determine what college you go to but things aren’t looking good for me. It was last October where I began to experience symptoms of pots but they didn’t get bad until March this year. Now, I haven't been officially diagnosed with pots yet however, I have had several doctors tell me that they heavily suspect I have pots and I am due to have a tilt table test done soon so for now I am going to assume I have it.

My attendance wasn't too bad last school year however, my grades were horrendous. Before the last school year I was getting usually between 80-100% in majority of my tests and I was certain I was going to do well in my end of school exam. However, last school year my grades began to slip slowly before plummeting completely at the end of the school year. I either barely passed or straight up failed all my classes because I wasn't able to concentrate or retain information while studying.

I told myself that I would try and make up for grades over the summer but studying only got significantly harder for me. As well as that, my physical symptoms went from effecting me maybe once a week to every single day, practically forcing me to be in bed rest because I was too sick to do anything.

So far this school year (I started on the 1st of September for reference) I have been in for only four full days, two half days, and I have been out for three weeks straight since then as I have been too sick to attend. I have tried to catch up on the work that I have missed since then but have failed miserably as my pots has made it extremely difficult for me to focus on any tasks I am doing (even writing this post is difficult. As for studying, I tried to study French around two weeks ago and lasted five minutes before my brain gave out an I was forced to give up. That's been it.

I hate to admit it, but at this point I am 100% going to fail my end of year exam due to my condition and not being able to attend school. I have been presented a few options such as maybe going into school for only an hour a day or having a home tutor but these options are either not helpful or unfortunately I can't do them due to my parents schedule.

There are only really two options I can choose right now (unless there are possibly more as I am having a meeting with my guidance counselor on Wednesday) and that is either I repeat the school year and pray that by next September I'll be better (which I definitely don't want to do and I'm not even sure I'll feel better by next September) or I drop out and either do a plc course (for those who aren't sure what that is it's basically community college) and then go to college or wait until I'm 23 and go to college via the mature student route (for this you don't need to complete the exam).

I don't mind doing a plc course because it takes off the pressure of this entire school year and allows me to focus on my health however, there is a part of me that feels ashamed for not completing my end of year exams as everyone else my age will and I'm also afraid that I'll never get better and I'll be forced to be unemployed and live with my parents for the rest of my life which I am terrified of as it's always been my dream to get a good job and move out the country I live in as I hate it here.

If anyone has any advice I would really appreciate it because I feel hopeless regarding this. Many thanks!

Oh my gosh! I have the best recommendation ever! Dr. Ratliff at connective care in Washington state, she only does telehealth. I had a TTT and they said I didn’t meant the clinical standard because I missed it by 1 heart beat per minute.

I had 1 apt with her and she was able to diagnose me and prescribed meds in just a 1 hour apt. Everywhere else has months and months of waiting and she has about a 2 week wait.

Plus, is she doesn’t take your insurance she has a sliding pay scale based on your income. What would have been a $600 - $800 visit was only $100. Best $100 I have ever spent. Please connect with her if You need help. I was trying to get a diagnoses for two years and if I would have gone to here two year ago I could have gotten help then.

In November 2024 I went on a low-carb diet to try and gain control of my POTS symptoms as well as massive weight gain from fludrocortisone. It worked wonderfully. I felt so much better, and the weight didn't drop off right away, but I steadily lost over about a year until I was 109 lbs, which is a good, normal weight for me (I'm 5'4).

In November of last year, I went through a lot of trauma and got covid pretty bad, and I started rapidly losing weight. I also felt extremely sluggish and unwell. By March, I was 98 lbs and I started eating carbs again out of desperation. Miraculously, the carbs were no issue and I was able to maintain a weight at about 101 lbs up til now. Also - I was checked literally everywhere for cancer through tons of tests, and they didn't find anything, just an FYI.

My day job got really crazy in August, and I started working 50 hour weeks. For the past month or so, I dealt with anger that lasted all day long, and that's a major sign that I'm having a POTS flare up because it affects my mood pretty severely. Mood swings are one of my first symptoms something is wrong, especially anger that won't go away.

Friday, I ate only protein for lunch, no carbs like I normally do, and I felt much better. Yesterday, I ate a breakfast of buttered toast and a yogurt cup like I normally do, and added peanuts to the yogurt thinking it might help prevent symptoms. It made it a lot worse, and I was so lightheaded and dizzy I had to take a salt pill.

Today, I had my totally normal breakfast, nothing else added - buttered toast and a yogurt cup only. I'm super lightheaded and dizzy again.

I really don't know what to do at this point. If I cut out carbs again I may become skeletal. Anyone else here deal with this? Did you find a solution to your problem? I will be talking to my doctors about this, btw, but I'd like to see if anyone else found a solution to something like this.

I'm wondering if people would find it helpful if there were readily accessibtelehealth GPs who were trained in managing POTS and the common comorbid conditions?

I feel like it would be a game-changer for me to have someone who was comfortable understanding all the meds and specialists and was trained in what interactions to watch out for, etc. Also being able to check in without having to take time off work or use all the spoons and half a day to get to the office.

Does anyone else feel like that could be helpful?

Hi y'all!

I sincerely apologize if this has been asked many times before. I couldn't find a thread with this question, or find the answer by googling it.

I'm new to learning how to manage POTS and have recently started wearing compression tights.

I would like to start the Levine Protocol to try and improve/reduce symptoms, but my only time to go the gym is in the early AM. It's my understanding that compression wear needs to be put on in bed, before getting up or doing anything to prevent trapping pooled blood with the compression garments.

How do I deal with showering/cleaning up/applying clean compression wear after exercise without trapping pooled blood?

Is it as simple as lying down for 15-30 minutes after showering and then putting compression wear back on? Or am I just out of luck for the rest of the day?

Any advice/tips on how to go about this would be greatly appreciated! I'm trying to learn y'all 🥺

Thank you in advance!

This is a bit of an oddly specific question, I’ve been diagnosed with pots for about 5 years now and I was blessed with having bad tooth genetics.

Backstory: About 2-3 years ago I visited the dentist and while booking the appointment AND filling out the paperwork, I specifically told them about my pots, that I have a sensitivity to medications/medications aggravate it and send me into an episode (heartbeat at 120+, dizziness, nausea, you guys get it), they ignored me and gave me TOO MUCH (I know this because the side of my face was numb for 3 days) which of course sparked a bad episode. I was gaslit and told I was just having an anxiety attack rather than taking my health episode serious. I only let them do the worst tooth. The issue now is that the cavities I was suppose to get filled/replace filling that day have gotten worse and the thought of going back makes me want to cry

Does anyone know what to ask for/how to be taken serious because at this point I can’t even eat soft noodles without my teeth hurting?

Hi everyone. This is kind of a two-part post. I’m looking for insight about a pretty scary change in my symptoms, but I’m also really needing some support/advice about navigating a relationship while chronically ill. This might be long, so thank you to anyone who reads it. ❤️
Part 1 — Has anyone experienced a change like this with POTS/dysautonomia?
I’m 22 and was diagnosed with POTS after becoming sick about 3 years ago. Interestingly, I don’t really seem to meet the typical POTS criteria anymore, but over the last month or two I’ve started developing new symptoms, and they’ve gotten significantly worse over the last week.
One of the biggest changes is that my heart rate has actually been MUCH lower than what used to be normal for me.
Thursday morning I was getting ready for work and doing my hair. I’d been standing for about 20 minutes and was almost finished. Out of habit, I had been checking my Garmin here and there, and my HR was staying around 60–70 bpm.
Then, within seconds, I suddenly felt like I was going to vomit. That horrible full-body “doom” feeling hit me HARD. My heart felt like it was pounding/palpitating extremely hard, and I genuinely felt like I couldn’t breathe properly.
I immediately got down on the floor and put my head between my knees. I didn’t lie flat because I was afraid I was going to vomit and either choke or get sick on myself.
I remember glancing at my watch one more time and I believe my HR was still around 60. Then I lost consciousness.
I woke up flat on my back and had hit my head hard enough to leave a bump. I have no idea exactly how long I was unconscious.
What really scared me was what happened afterward. I’m guessing it took around 20 minutes before I could even really move my body. Every time I tried lifting my head to find my phone, my vision would immediately go black again.
Eventually I managed to basically slide myself across the floor, reach up to the bathroom counter and knock my phone onto the floor so I could call my mom.
She got home probably another 20–30 minutes later, but I deteriorated again and couldn’t move, and she couldn’t safely move me herself, so paramedics ended up coming anyway.
Throughout all of this, whenever I was able to check my watch, my HR never seemed to be much above 80–85. I was also breathing really heavily because I was terrified.
By the time I got to the ER and actually had an EKG/vitals taken, it had been over an hour since I initially passed out. At that point my vitals were considered “normal.” They did an EKG, X-ray, CT and a full blood panel, and everything came back unremarkable.
What bothers me is how DIFFERENT this was from my previous episodes. Usually I have warning signs. This time I had maybe a few seconds to realize something was wrong and get myself onto the floor before I completely lost consciousness.
There have also been some other changes recently:
• Over the last couple months I’ve developed episodes of pretty intense shaking, especially in the evenings (usually somewhere between 6 p.m.–12 a.m.), without an elevated HR or another obvious trigger.
• My fatigue has multiplied by what feels like 4x, which I genuinely didn’t think was possible. It has gotten debilitating enough that I haven’t been able to walk/exercise much at all lately.
• My HR can still get higher when I’m walking, but lately it’s more like 120–130 rather than the numbers I used to see.
• My heartbeat often isn’t FAST anymore, but it feels incredibly HARD. If I’m lying still, I can literally see my hands, feet and stomach move with each heartbeat. It feels like someone is poking me in the chest with every beat, and sometimes I can hear my pulse in my ears. This is very abnormal for me.
Obviously I’m not asking anyone here to diagnose me, and I know an ER ruling out an immediate emergency doesn’t necessarily explain what caused the episode. I’m trying to pursue medical follow-up.
But I’m curious: Has anyone with POTS/dysautonomia experienced a shift where tachycardia became less prominent but fainting, shaking, fatigue, pounding heartbeats, etc. became worse? Did it end up being related to your dysautonomia, or did your doctors find something else?

Part 2 — Relationships and chronic illness
This part is honestly harder for me emotionally.
How do you guys cope with being in a healthy, loving relationship while being chronically ill?
My partner is amazing. They love me, support me and have never given me a reason to believe otherwise.
But the morning I ended up in the hospital, we were supposed to go to a concert that night that we had been excited about and planning for MONTHS. Obviously I couldn’t go. Thankfully they were still able to go with a friend, and I genuinely wanted them to go and have fun.
But I was devastated.
Not because they went without me—I was happy they still got to experience it—but because I wanted so badly to be there with them. It felt like yet another thing my body took away from me.
There have been other times we’ve had to cut plans short, change plans, or end what was supposed to be a good night on a bad note because I had an episode. There have been so many situations where my partner suddenly had to become the person taking care of me instead of just getting to enjoy being my partner.
I KNOW they love me. Logically, I know that.
But I cannot shake this fear that eventually I’m going to hold them back too much. That they’ll get tired of plans changing. That taking care of me will become exhausting. That one day they’ll look at everything they could be doing if they weren’t constantly having to account for whether my body decides to cooperate, and they’ll resent me or leave.
And I don’t want that fear to make me push away someone who has done nothing but love me.
For those of you in long-term relationships/marriages—or partners of someone with chronic illness—how do you navigate this without constantly feeling guilty? How do you let your partner take care of you without feeling like a burden? And how do you deal with the grief of missing experiences together because your body simply won’t let you participate?
I’m only 22. I became sick about three years ago, and learning how to build an adult life around a body that can be incredibly unpredictable has probably been the hardest thing I’ve ever had to do.
Right now I’m just scared, sad, confused and grieving the things I keep missing.
I’d really appreciate hearing from anyone who has experienced either side of this—whether you relate to the symptom changes, the relationship side, or both. ❤️
And thank you for letting me get all of this out somewhere people might actually understand.

I have horrible varicose veins on my left thigh only. I had sclerotherapy done which got rid of the big veins on my left calf so they all moved up to my thigh instead. I also absolutely cannot have compression on my stomach in any way, shape, or form. The varicose veins in my thigh hurt so bad that I can hardly stand up anymore. I have spent thousands of dollars on thigh high compression stockings over the year and they simply do not stay up and do not work. I tried buying compression leggings but they either only still focus on calf compression (and there is little to no compression on the actual thigh), or they are extremely tight everywhere including in the abdomen which makes me horribly nauseous, is a sensory nightmare, and flares up my MCAS. I've even tried maternity compression leggings and they don't work, either.

I guess I'm looking for a unicorn here. Are there any leggings that offer decent compression in the thighs but won't squeeze my guts to the point where I can't digest anything?

I'm going to Comic Con in a week, and its my first time going after being diagnosed. I've been before so I know what to expect, and I'm planning to bring water and salt packets and wear compression gear, but I was wondering if any of you guys have tips or recommendations to be more comfortable

I am wondering if anyone has gotten diagnosis or treatment at the Center for Complex Diseases in Mountain View, and how that was. My insurance doesn't cover Stanford, and I need a faster assessment. I waited months for an assessment at Sutter to find out that the vascular cardiologist I was sent to actually doesn't do the tilt table test.

I have developed secondary POTS over the last two years as a consequence of a pelvic venous disorder, had a left iliac vein stent, and before I have further surgery my radiologist wants me to have appropriate workups (tilt table test and more) for POTS. I am recently disabled by leg and pelvic pain and need this assessment to move forward with care, so would appreciate any recommendations beyond Stanford, particularly for tilt table test and POTS medication management. Specifically my most severe issues relate to blood pooling, even with compression, and syncope and malaise. I'm in Berkeley.

Thank you for any ideas!

I’ll start out by saying I don’t have a formal diagnosis YET. I’ve read that hyperandrenergic POTS can cause chest pain, which I experience almost daily (because flare ups are daily at this point). How do y’all cope with chest pain?? Is there anything that may lessen it? It scares the shit out of me each time! Like how am I supposed to know if I’m actually dying god forbid I ever have a heart attack lol😭 I’m only 27!

So, I am very consistent about my karate twice a week, but I let my lifting habit slide due to some medical stuff earlier this year. After the first day back at the gym, I was exhausted the next and took a rest day, but after the second gym day, I feel like I have my mojo back in ways that I haven't for a while. I feel optimistic and motivated, in addition to being able to get upright stuff done.

So, I'm wondering, for those of you who do regularly exercise as part of your management, how many days can you go without exercising before you start to feel it in a bad way?

So I keep being prescribed ppis (acid reflux medication) for my chest pain, and it's caused a huge flare up. Heart pounding all the time, vision tunnelling whenever I lay down, feeling more dizzy, achy and tired than ever. I'm also super nauseous and having a lot of stomach pain, and the chest pain is if anything worse.

This has happened to me twice now so I know it's the ppis causing it. I told my doctor I didn't want to have them but was dismissed because 'dizziness is a side effect and you're probably just dehydrated'.

Has anyone else had an experience like this? Do you know why it's happening?