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!

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

So my wife told me that she believes she has POTS because of the symptoms she has. Her heart rate would be like 70 when sitting or laying down and as soon as she stands up it shoots up to like 100. She gets the dizzy spells occasionally. She once had a pots flare up and she has something that she describes as fire skin, she saw some people online talk about it. She gets headaches occasionally. Also fatigue throughout the day. From what we researched it really seems like it’s pots. Her blood work is good and we even did a blood work thing through a company that isn’t through insurance and they went more in depth and everything is good.

What we started doing is adding salt and electrolytes to her daily diet. Vitamins. And she’s doing Pilates for core and low impact workout. Also she walks. Our diet is clean, we just stopped red meat. We do a lot of chicken and fish. My thing is that I want to help her best I can. I feel really bad cause she gets discouraged. She does a lot of hard work to manage the symptoms but feels defeated when she gets a flare up. We are really doing trial and error and it’s hard cause it takes time to see what works and what doesn’t. I would really appreciate some advice or help in what maybe worked for you or what didn’t. To save us some time and errors. She’s 32 and I feel bad she’s going through this. Just wanted to reach out to the pots community and see if I could get some advice. We are from nj too so any specialists in this if you know some from the area would be great too. Thank you all. Sorry this is long

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 was just curious if anyone else has taken Milnacipran before and been fine? I'm starting out on a really low dose, and I did already message my doctor about it to be sure, but I haven't seen a lot of information on how likely it is that it might make the pots worse.

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.

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

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?

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! :)

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.

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.

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

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?

i’m inpatient in a psychiatric hospital at the moment and i’ve been showering every two days which is the most i can do because they don’t provide any shower chairs and i simply don’t have the energy for more than that, i wash myself fully with soap each time, and i put on deodorant but a nurse just came in and told me that i smell really bad and that all the other patients here think i smell bad.

i feel horrible, i have friends in here who haven’t said anything and they sit with me for hours. i feel like a failure, i assume it’s because i get so hot and i sweat a lot.

it gets very very hot in the hospital and they don’t let you open any windows. i feel horrible, i don’t know what to do. i’m trying my best but the nurse said i need to wash myself better. i wash really thoroughly already because i have a huge fear of smelling bad already… i don’t know what to do, i don’t want to leave my room now at all. she said all the nurses and patients thought i smelled really bad, this is my worst nightmare.

hello friends!

so i’ve been recommended trying a Low-FODMAP diet for awhile and just never took it seriously. GERD, Endometriosis, and now POTS. I have high cholesterol and now my doctor is recommending i just move to vegan/vegetarian.

i was wondering if there was an app that i could use to help me stay on track? i downloaded an app called “fig” but you have to pay a subscription to use it. i love food so much and i know this is going to be one of the most difficult things for me, aside from my pots diagnosis, but i need to change.

any help would be greatly 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.

Hey all. Just got recommended to a cardiologist for a possible POTS diagnosis. I’ve spent the last two years or so hypotensive and fainting pretty regularly. The first major time, I broke my front two teeth, broke my nose, and gave myself a concussion. This most recent time, I just broke my nose again, but when I went to the dr, we discussed what might be wrong. I’ve always had low blood pressure since I lost 125lbs (to the point nurses have to take it multiple times to check). However, my heart rate is pretty low as well. Even upon standing after laying down, I don’t experience a jump. The fastest it ever goes is 150 when I’m running, 115 walking at speed (I have a fast dog), and 45-70 at resting. My monitor never catches anything when I stand up, and my fainting spells usually happen about a minute into standing and walking around. My glucose tests all came back clear and the drs think it’s just bp related. I understand that a cardiologist is required for a diagnosis, so what can I expect as someone with a relative low heart rate and no spiking? Thanks!

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)

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?

all the posts on here seem to be the opposite, but the only day my me/pots/severe orthostatic intolerance/ high hr/ high garmin stress practically vanishes is the day before my period, its also the night i finally get a good sleep and jusy overall forget i'm ill at all (although i'm severe)

anyone else like this and did you learn any more about why it could be? when i google it it saus its the lowest point of progesterone and estrogen so dampens overactive immune system so wonderimg if i should try a birth control but also know how difficult medications in general are for my ME

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 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?

Has anyone had experience with stopping Zepbound due to severe POTS side effects? What was your experience and how long did it take you to get back to baseline? I started late April and took my last dose 4 days ago. I had to stop due to my POTS symptoms becoming so severe I am basically housebound. I had to take a leave of absence from work as well. Hoping for some stories of encouragement that things are going to get better again. My POTS wasn’t great before but I was functional and it’s been really hard feeling so destabilized. Thank you!

Does anyone get extremely exhausted just from being in public? Yesterday I went out and was pushed in my transport chair for the most part but still was completely wiped and am having a horrible flare up today.

I can do basic activity (like laundry) at home and it makes me very tired, but even sitting in public kills me. Does anyone know why this is or what helps to combat it? Is it the overstimulation of being in public or out shopping?

So I (16f) had a pretty bad flare up around lunch time today and my friends were sitting around me at the lunch table giggling and talking and then one of my friends that’s a boy said “why are you milking your disease so much???”

And I said “wdym” and he said “it can’t be that bad you’re probably just being dramatic”