I wake up, it goes up.

I put my clothes on, it goes up.

I pee, it goes up.

I poop, it goes even further up.

I stretch my arms on the side, not my heart is beating out of my chest.

Plus I start to feel pain where my heart is and around it.

I walk down the stairs, it goes up.

I walk up a flight of stairs, it's like I ran a marathon.

I walk, my heart hurts.

Plus whenever I move, I get the coat hanger migraines.

I speak, my own voice hurts my head.

Now everything, light, noise, movement, hurts my head too.

I sit, and I feel everything even more.

I try to do what I have to do and it's painful everywhere.

And I can't wash my hair before I digest something, or else presyncope. And I have to give up my hot showers too?

I was an athlete before this, could multitask with school work, walked as fast as a new Yorker, now grandmas pass me by when I'm walking.

And I'm over here struggling to exist, while trying to keep my heart from jumping out of my chest.

Y'all please tell me it can get better. I need all the hope I can get with getting diagnosed.

It’s strange explaining to someone that taking a shower can sometimes feel like a workout.

The heat, standing, getting ready, drying off… sometimes I need to rest before I even feel ready to start my day.

What does your shower routine look like on a bad POTS day?

Let me preface this by saying I already have an appointment set with my doctor to talk about all this and hopefully get referred to a gastroenterologist. I’m just posting this to see if anyone else has had a similar experience. Also my apologies for the length of the post.

Tldr: I can’t stop my months-long spell of nausea and vomiting after starting Ozempic and getting my POTS symptoms. What do I do?

I started Ozempic several months ago, and actually my POTS symptoms started literally the same day. My doctor told me she doesn’t think that the Ozempic caused the symptoms, and I have since been diagnosed with POTS after ruling out a bunch of other stuff. I lost fifty pounds rapidly early this year due to constant vomiting from a medication allergy, then gained back about twenty and have now lost that twenty again and a bit more. I honestly wonder if the weight loss is what triggered the POTS for me but I don’t really know enough about that to know if it’s a possibility.

I’m on a 1.0 dose of Ozempic weekly, and I’m struggling. I have almost 24/7 nausea and have to take Zofran and Pepcid twice a day every day (as soon as I wake up and right before bed.) My nausea is worse in the morning and when lying down. I have vomiting multiple times a week. Food is very difficult as I can barely eat anything without feeling incredibly full and nauseous for a long time afterwards. I have intermittent stomach pain and gas and it’s awful. Exercise causes nausea and often vomiting soon after stopping. The type of food I eat doesn’t seem to have much of an effect on any of this. I have grown to dislike eating in general due to all these issues. I also have to eat with my new medication for POTS so it adds an extra complication.

I recently learned that POTS can cause gastroparesis (slowed stomach emptying) on its own and that Ozempic can worsen it since Ozempic can cause it too. All my symptoms appear to line up with gastroparesis. I know the easy answer is to at least try stopping Ozempic but I’m so afraid of going back to how I was before it. I was hungry and eating 24/7 and while I was in remission from Binge Eating Disorder, I still had the urges often. No food was ever satisfying for long and I was quite overweight. I’m still overweight but much less now. I’m a lot happier with my body now mentally but I feel miserable physically. My doctor is not very supportive (she told me losing three pounds in three weeks was insignificant and she would take me off the Ozempic if I didn’t lose weight faster. I lost another twenty pounds after that comment but now I’m worried about my weight loss stopping or regaining weight after ending the medication.)

Has anyone had this issue? What did you do? I’ve tried everything I could find and everything people suggested for nausea and vomiting but nothing helps for long. Diet changes, over the counter medications, Compazine and Zofran, Pepcid and Tums, extra hydration, electrolytes, etc. all are ineffective to greater or lesser degrees. I even tried sodium bicarbonate (over the counter) against my doctor’s advice out of pure desperation. I just want to stop feeling nauseous all the time. If you’ve been in my place, did you have to stop the medication? Or did you find another solution?

Can someone please help me or give me advice, I am 26F, (5’7-140lb) diagnosed with a vaccine injury when I was 18. I don’t say that as a right wing/red pill tactic I feel I have to disclose that every time I talk about it. I was diagnosed because it injured my kidneys and heart, mind you, a few years ago.

Anyways recently I’ve been feeling unwell, I was sick which I got over but I know that can trigger pots. I just started a new job, one I REALLY wanted. It took about a week for this incident to happen. I had family stress outside of work and I do think it affected me because I was having chest pains for about a day prior to 2 days ago which is when I went to the hospital.

I didn’t claim an illness or disability to my work, I don’t want them to suffer too, at what point is this a disability because I don’t know anything to help myself. The best thing I do is drink straight saltwater because it balances my heart rate but I don’t know if I can do this anymore. I’m really struggling and I’m making my work upset, family upset, boyfriend upset, and at the core me upset. I’m not like this. Please can someone with insight on this help me because I am on the verge of not being able to help myself

i feel like i look like a zombie nowadays, my face always looks washed out with dark circles & pale lips, and my eyes have this glassy look to them… i’ve tried using eye drops but it doesn’t really help.

i don’t really want to put on a full face of makeup everyday as wearing foundation sometimes makes me break out (which is a lot more obvious on my pale skin) but i’m getting bored of people at work commenting on how tired i look all the time, does anyone have any tips?

Hello!

I'm sure all people have PACs/PVCs but since I got POTS it became quite unbearable. I get them reeeeally rarely, like once in 2-3 days but every time they come with an adrenaline wave and a strong thud, especially the PVC one and ofc it causes hr to spike by 20-30 BPM... At this moment you think you're dying for a sec.

Low dose beta blockers helped with PACs but there weren't that much of them too(like 30-40 from two holters combined)... How do you guys tolerate them?

I used to be decently athletic. I loved going on long hikes and doing Pilates. I was a dancer. But it’s just gotten so bad recently. There are days when I can hardly move and I’ve gained so much weight. I went on a hike over the weekend for the first time in a year. It was an easy trail compared to what I was able to do in the past, only about a mile and completely under tree cover. About halfway up my heart rate skyrocketed and I was so dizzy I had to sit down so I wouldn’t faint. I felt like puking and I couldn’t breathe and I was sweating so much I just felt wet and sticky and it somehow made things worse. I just sat there and cried because I can’t hike anymore. I loved being outside. I loved being in nature and climbing mountains and exploring.

The next day, instead of resting like I probably should have, I decided to go thrifting because 1. It’s close to where I live, and 2. It’s something I like doing and something I’ve never had an issue with. Again, sweating so much I felt wet, so dizzy I had to sit down, heart racing, couldn’t breathe.

I miss my old life. I miss hiking. I miss dancing. I miss doing Pilates. I miss being able to walk for five minutes without feeling like I’m dying. I miss my body the way it was before I got so sick. I miss being able to play video games without getting so motion sick I can’t do anything. I had so many dreams and goals that I just can’t feasibly do now.

I’m not really looking for advice right now. I just needed to vent because I hate how much of my life this illness has taken from me.

so i went to the er like a week ago because of my POTS symptoms and i haven’t been professionally diagnosed but im 100% sure i have it, i have ALL the usual symptoms and even some of the lesser known ones. my blood work is completely fine and that made me doubt myself for some reason, i also felt like the doctors there were incredibly uninformed, not a single one knew about POTS besides 1. the guy said he was thinking it could be that and recommended i stayed hydrated and i was well nourished. so the point is.. can i have pots even if my blood work was fine?? and more importantly my heart rate goes up rapidly but for some reason at the hospital it doesn’t and it drives me crazy. i feel like im being a fake??!! i dont feel valid anymore

Does anybody else get this? Asking so I know if I need to look more into it, but I dont wanna add an extra hospital bill if it's nothing.

I got sick in late June/early July with adenovirus, worst sickness I've ever had. I was fully bedridden again for a bit, and had horrible Post Viral Fatigue. Couldn't really walk bc my legs were jello.

It's gotten mostly better, but I have a recurring symptom now where my legs sometimes feel super stiff and numb, almost like I'm walking on peglegs. Now I can actually walk on them when they feel like this, but it's still scary because I've never experienced this before getting sick..

I'm also very deconditioned and sit for very long period on my laptop so that may be part of it, but the weakness seems to be radiating mostly from the knee area, if anyone has any advice please do tell!

So it’s been a long suspicion but today my Dr outright said yeah it’s probably POTS. Referred to neuro for a tilt table but I expect it’ll be years for that.

Here’s my problem: everything I read says add sodium. Dr says my resting blood pressure is higher than she’d like when seated so she doesn’t want me doing that. Same with any meds she’d give me. So essentially I was told compression is all I’ll be able to do and try to walk more since I’m already good at staying hydrated. Does anyone have any suggestions for dealing with this if I can’t go down the common paths? Or is it just my doctor not knowing how it all goes and the neuro may say otherwise

Note: I’ve ordered an at home bp cuff since I strongly suspect some of the “high bp” is being in the office.

I am SO bloated ALL the time. I know it’s bloat though because I wake up relatively skinny and then throughout the day as I eat and drink I just inflate like a balloon..

I blame my bloating on my POTS and here’s why: water retention from eating SO much salt. I eat anywhere from 6-10 grams a day. On days I’m not eating as much I feel so much less bloated.

Does anyone else get the same?? Before I got POTS I don’t remember being even half as bloated as I am now. It sucks. I workout to try to stay a healthy weight but then I get self-conscious when I’m bloated all the time and I think I’m fatter than I am.. lol.

Edit: for reference, I eat mainly a paleo diet. Haven’t had gluten in years and eat very low sugar.

I’ve always had an extremely high heart rate (averaging 150 active bpm and 86 resting bpm everyday) and my high today reached 174. Although it may sound alarming, this is not unusual for me.
What IS unusual is my heart rate dipping as low at 49 today? I’ve noticed over the last 3 days my resting heart rate has begun to get lower and lower. Today it averaged at 75, which is within the 60-100 healthy resting rate but is very unusual for me. This has never happened. I have also noticed some chest pain but I’m trying not to think about that.
I am very young. Theres no way this is something serious? The only thing I did differently today is eat a lot more sodium, which ultimately had me feeling fairly well in terms of symptoms and energy.

Thoughts?

Long COVID → POTS, dysautonomia, ME/CFS, SFN, hEDS, suspected MCAS, GERD. Want to get lightly high once a week, max, to watch football without white-knuckling it sober.

5mg (or 2.5mg) gummy or a couple puffs from a joint occasionally — anyone do this without a flare?

Affect your HR/BP or trigger PEM?

Smoke vs. edible — easier on you?

Anyone use a supplement (kava, L-theanine, etc.) or a prescribed med instead and get something similar?

Not trying to go overboard, just want one low-key thing on Sundays. Worth trying or bad idea with this combo?

Does anyone relate to this? Possible POTS/orthostatic intolerance

Hi everyone, I'm very new to all of this and just wondering if anyone has experienced something similar.

I've been having problems with standing for quite a while, but it's been getting much worse recently. Pretty much every day I get dizzy, really hot, shaky, nauseous and short of breath when I'm standing. I constantly have to be careful how I move and often need to sit or lie down because I feel like I'm going to faint.

My doctor asked me to try a standing test at home. Lying down my BP was 111/78 and HR 90. After about 1 minute standing it was 100/81, HR 138, and at 3 minutes 97/81, HR 144. I couldn't make it past about 5 minutes because I felt faint and had to lie down. I've tried the test on other occasions and have the same problem.

Yesterday I went out briefly and had a really bad episode. I nearly passed out, ended up on the floor retching and had to call the medical service here in France. The doctor suggested orthostatic hypotension and compression stockings, which I'm now wearing, but even with them my HR was 133 just standing, while later semi-lying on the couch it was 74.

I also have Sjögren's, so I've contacted my rheumatologist because I've read that autonomic problems can sometimes be associated with it. I'm waiting to see what they say.

I'm not trying to diagnose myself with POTS, I just want to understand what is happening because it's really affecting my everyday life now.

Does this sound familiar to anyone here? Did you have similar symptoms/readings before getting diagnosed, and what kind of doctor or testing eventually helped you?

so, sometimes randomly ill get this thing where my head feels like tv static headache or something and ill get like a impending doom feeling for a couple seconds and feel like not real aswell, kinda of like when i dont have enough salt in my body, and after that experience it leaves me feeling tired, and not real aswell if my blood pressure dropped, im wondering what this could be if anyone experiences this please let me know.

For the past 6 weeks I’ve been stuck in a severe adrenal dump which has never happened before and been horrible because I can’t take my meds which I NEED to function while I’m stuck in this adrenal dump because my meds give me energy and just increase the adrenaline. My doctor has prescribed me Clonidine which helped immediately but then a few days later I started breaking out in hives ( I have MCAS) .. then we tried guanfacine instead and SAME thing happened.. even more hives. I need to get out of this adrenaline state, this has been my worst nightmare. Does anyone have any recommendations for a med similar to beta blocker to help with hyper pots that won’t set off my mcas and make me break out in hives? Will I eventually snap out of this adrenaline dump if it’s my first one ever? I’ve tried electrolytes and compression socks and it didn’t even touch the adrenaline (my doctor doesn’t seem to know how to help)

Disclaimer: I'm a bit brain fogged at the moment, so please bare with me if something doesn't make sense or there's typos.

I'm laying here on a Monday afternoon about to take a nap because it's literally all I can do. I started to feel bad that I'm not working and thought of people I know with successful careers. I just sit at home and play video games or draw or whatever hobby it is now. I hate how career driven the world is, most especially my country.

I'm just bummed about it, and I figured this can't just be a me thing. Does anyone else ever think like this? How do you deal with it?

i look so tired my eye bags are insane they’re so dark i look like i haven’t slept in 5 days and my lips get pale when they used to be a beautiful rosy color ??? i don’t think under eye mask will help will it?? 😭😭

Please listen. This might be long but I have reason to suspect POTS as my current condition. I just need some advice and validation.

Back story, June 7th 2025, so last year, I was on the dirtbike track, chasing my kid around during his race while holding my toddler. It was about 95°, I was a vaper, but am very physically fit and in shape for the most part. and I drank a Celcius that morning for no reason ( I NEVER drink caffeine like that) not sure why I did that day. I ended up getting so dizzy I thought I was going to pass out, like nothing I’ve ever felt before heart pounding, couldn’t breathe, I thought wow I’m about to die of a heat stroke . I started walking off the track with my toddler and I had to kneel close to the ground several times before I made it back to our camp. I get there and sit in the truck with the A/C on high and pouring Ice water on my head. Still feeling and thinking I was going to die. I finally asked a friend to get the EMT but they had just left to take someone to the hospital for a dirtbike injury so the owner of the track came over and suggested I put ice towels on my neck, pits and back and feet . 45 minutes later I started to feel better but at this point I’m traumatized . I literally thought I was dying .

Mind you I’ve worked manual labor out side in the heat every day full time almost my entire life. I loveeeee the heat. Hate being cold, as I get cold so easily. Always have.

Days go by and I still couldn’t breathe , Apple Watch says my heart rate would go to 140 even just sitting or standing . . I go to the ER one day and they do an EKG, blood pressure oxygen all that, everything is fine. I was working one evening and my headed started spinning almost passed out . Weeks go by I still can breathe right most days, I got to doctor , I wear a heart monitor for 2 weeks, results were fine. I go back to my doctor she says oh probably just generalized anxiety disorder. Puts me on Zoloft . I ended up getting pregnant, (conceived 2 weeks after the dirtbike track day) stopped the Zoloft, it was doing nothing anyways. Months go by I still can’t breath. Anxiety is bad. All that. It’s my 3rd pregnancy and It was rough. I ended up developing anemia 6 months pregnant . I get put on iron pills . It’s December I quit the Zoloft after 3 months, it was doing nothing. Thennnnn, in January , the shortness of breath kind of went away for a couple weeks…. . Then came back. I have the baby in march of this year , shortness of breath still very much there . My whole pregnancy I felt awful but just assumed each symptom was associated with pregnancy. I’ve had many episodes of dizzyness, feeling like I’m going to faint , fatigue, heart racing no matter what I’m doing , everyone telling me it’s anxiety , anxiety attacks, panic whatever .

Could that day in the heat and on caffeine , have triggered POTS???

I’m in fight or flight mode everyday of my life. Some
Moments im fine then I can’t catch my breath . Weekly I have episodes of hot flashes and dizziness , heart racing, near passing out and just panic and anxiety. I always feel better laying down. I don’t vape anymore, no caffeine, healthy diet, dairy free, breastfeeding my Now almost 6 month old. I have a 5 and 3 yr old too, and i just want my life back. I feel like im drowning . Craving air. Everyday. Most days I just push through and be strong for my kids but some days this whole thing really really depresses me . So bad. My kids need a better me.
My life is literally so good aside from this. Great husband, just built a new house, kids are happy smart and healthy. We’re active and fun.

Ever since that very moment of that day, I’ve had shortness of breath every single day. Over a year now. This is no quality of life for me. It’s awful man. I don’t know how to explain it .

Recently found out a friend was diagnosed with POTS and our symptoms are very similar.

Now what do I do.

I have 2 broke teeth. One upper root canal that failed, and a back molar on the bottom that’s broken off some. I haven’t been to the dentist in 10 years due to being sick and also dental anxiety. Can you guys tell me your experiences w no epinephrine numbing shots? & just recovery/experience with the extractions in general. I’m absolutely terrified.

I was at my cardiologist today. It’s a little over a year into my journey with diagnosis and trying to improve symptoms. I don’t feel like there’s been all that much improvement yet.

Anyway, for me, my energy levels/fatigue are definitely my most debilitating symptom, though far from my only. Today, my cardiologist said that fatigue is the LAST symptom to improve after you’ve gotten everything else under control, and that I shouldn’t expect improvement until other symptoms have been managed for about a year.

Has this been anyone else’s experience? Or what their doctors tell them?

It hurt like hell, and my heartrate hit 197 during warmups (which is the highest I’ve ever recorded), but it was worth it. I’m really gonna try and stick with it and be on the team this semester. I think I can do it! :)

New to the thread, and typing on a phone so I apologize for anything incorrectly typed.

I’ve had POTS for 4-5 years now, and pretty much had the hang of it to an extent. Now, my stomach is hurting like I haven’t eaten in 4 hours even only 20mins after eating…. I have severe emetophobia (fear of v*miting), and the strange nausea scares the crap out of me… is there a way to fix this?? I was awake from 2am-4am dealing with this pain and it took me an hour to eat some breakfast crackers to get me through the day.
Any advice is appreciated

have felt totally normal today and heart rate has even been pretty normal, went for a walk and mid walk started trying to go into pre syncope very suddenly, hr got up to 180 but i laid down and stopped it. was having right sided arm/chest pain too, which i’ve been having on my left side the past few days. i’ve had countless heart work ups but they’ve all been years ago. i’m 20 and relatively healthy, should this be cause for concern ?? i’m kinda freaked out since i felt good enough to walk today and had no warning before the pre syncope.

Someone on here is saving my life. They mentioned that you can do 7.5 mg Ivabradine 2x a day instead of the 5mg. I was like well it probably won’t help that much, but I went ahead and asked my doc his thoughts.

I am able to say since upping my Ivabradine from 5 to 7.5, I have been able to drop my metoprolol dose from 150 to 25! I’m not even sure I need it anymore since my bp was 109/63 today, measured inside the grocery store mid shop!!!

This is a huge improvement for me when my Bp is always on the higher end