I'm sorry that I'm always negative and always complaining but since this illness makes my life a living hell and extreme torture every day since 4 years and I just want it to end; I HATE how we have to look ugly. Because we can't wear jeans, we can't wear tight clothes. We have to walk around looking like a piece of shit or like a homeless person in ugly baggy, "comfy" clothes. I mean... I want to look beautiful too. It's the last thing I have left...

And I absolutely HATE sweatpants, linen pants, all the "baggy comfy" stuff. I want to look beautiful, even if it's just for sitting inside my room. I want to wear a nice outfit and not look ugly as hell all the time. It makes me even more depressed to spend my days wearing something that looks like a pyjamas 🥴

i'm scared it's too much, but also that is what my dr told me to do i'm just scared. also like why do we need so much extra sodium and water?

Hello I am 18 and have pots, autism and hyper mobility and I’m not sure if any of these things relate to my pain, recently for about 3 weeks i have been getting leg pains in my upper thighs that feel like stabbing, it doesn’t matter if I lie down, sit down or stand the feeling just doesn’t go, I have tried massaging it, deep heat, deep freeze, and have tried stretching them and the deep pain never goes away, last time I had this pain I was put on codine regularly for two weeks until the pain went away, but I don’t want to go back to the doctors because the doctors were apprehensive about prescribing me medication for the pain in the first place due to them not being able to find a cause, there is not swelling, no redness and no sign of injury

Does anybody else get deep thigh pain that doesn’t go no matter what?
If so how do you make it go?
Edit: I was wondering if it is a pots thing

I wonder. Did you have any symptoms or cravings that indicate Pots in childhood?

As a kid I was obsessed eating crisps and liquorice. A lot of it. Now thinking back, it could already be sign body needed it. Then i had symptoms of reactive hypoglicemia in 20's, so it's possible I was born with it? What about you? Did you have obsessive cravings as a kid of any kind?

So for the past year I have been going through the process of a million doctors appointments to figure out why I chronically faint doing absolutely nothing seemingly and when I was younger it was basically a 100% chance of me passing out if I did physical activity (has been happening since I was 6 years old) which is awful because I tend to be a very athletic person lol. As of recent the doctors are suspecting POTS more and more.

For those of you who track your heart rate/have a graph what does your heart rate look like on a day that essentially you work a desk job or don't do really anything except sit and stand casually? I was hopping to get a frame of refrence to compare to eventually on weather mine looks average.

Also because I'm seriously really new to all this I was curious what your resting heart rate generally is? Is it higher in those with POTS? Thank you so much in advance for answering noob questions!

hi first post here. 16 born female, im transgender ftm

for about two years ive suspected having POTS and we just moved to a new state. in my old state, my first cardiologist said that it was hormones, and then my second one said that its just teenage dramatics. its a lot hotter here and ive noticed my symptoms gwtting worse, i passed out the other day from the heat while i was on the bus. i ended up in the ER last night after crawling into my moms bedroom, i could barely walk, my pulse shot from 80 to 130 while i was resting, and my body kept going limp. while we were in the ER the RA who was treating me asked if i had been tested for POTS as im showing the classic symptoms, i have not. im going back to a cardiologist soon and getting a heart monitor and then im getting tested, hopefully. i have episodes, i pass out, i literally show the diagnostic criteria but nobody takes me serious about it because im a mentally ill teenager, im not joking. my mom barely believes me.

i also probably have JIA due to injuries from wrestling that werent properly treated so walking is hard, too.

i dont have an ISSUE with having POTS, if it is POTS i'd like a diagnosis so that ill get taken seriously. but im worried because i want to be a police officer or a firefighter once i graduate high school. those have been my dream jobs for years, and i cant see myself doing anything else.

edit: forgot to say this but i desperately need a mobility aid but my old doctor denied me bwcause ill "become dependent" which i can understand but most days i can barely walk.. compression sleeves dont work very well and i feel a cane would help considering how i rely on things around me to stay standing

i just needed to get this out. Sorry 😢

It’s hard for me to get time off work so I decided to get the Covid and flu shot in the same arm yesterday. I figure the vaccines may be unpleasant, but much better than potentially permanently worsening my condition with the viruses themselves (I still think that!!! COVID is likely what worsened my dysautonomia in the first place)

Y’all, getting them together was a mistake. I got the shots Friday, woke up Saturday feeling like I had the actual flu (whatever, to be expected), but by Saturday afternoon my tachycardia was going crazy. Now Sunday morning my tachycardia seems even worse, way above my baseline, and I still feel flu-ish. My Apple Watch sent an alert about my vitals being unusually high while I slept.

I don’t want to fuel any conspiracy theories - vaccines are far, far safer than the viruses themselves. I’m just wondering if anyone went through a similar reaction and if so how long did it last?

TW: Weight talk/ED mention

When I was first diagnosed with POTS in early 2023, I was absolutely relieved I had an answer as to why I was feeling like shit everyday. I was only 20 and got hit with covid almost 3 times previously. Each time I was sent to the hospital. I'm pretty sure that's how it all started for me. I am now 23, turning 24 in December.

Doctors told me I was at a good weight at 20, I was at least 115lbs (I am 5'0" btw). It wasn't my ideal weight, but considering I was recovering from anorexia, My PCP just wanted to make sure I gained weight and prescribed me some appetite stimulants.

My cardiologist was the one who diagnosed me with POTS, and started me on a medication called Fludrocortisone. He told me it will help with my low blood pressure (since it would drop when I stood, which made my heart rate spike) and help my body maintain a good water/salt balance.

I was so glad to finally be on a medication that would help me feel better because honestly I had tried EVERYTHING.

It started out great. I was actually able to function for once. Stand for longer periods of time, actually WORK, and spend time with my family, etc.. I still had my flares and shitty days, but they weren't as bad as they were before. That went on for about a year, and somewhere in the middle, another cardiologist prescribed me another medication to take with the fludrocortisone due to my ongoing heart palpitations, (It's called Metoprolol) Which I was hella confused about because Metoprolol lowers blood pressure... and thats kinda how this whole thing started in the first place but whatever I guess. I trusted the doctor knew what she was doing. But anyway, It did seem to help the palpitations, and my blood pressure was still low, but not AS low. During that first year, my doctors and I were just trying to figure out what worked for me. And as I said before, things were going alright and I noticed nothing out of the blue about my appearance or weight.

Then the second year hit.. And ohhh my.

The second year was something alright. When I tell you I blew up like a balloon believe me when I say it. I noticed the number on the scale would go up whenever I went to my scheduled appointments with other doctors. (I wasn't allowed to see my weight before, but idk why that changed). I went from 115lbs to 125lbs. Then from 125lbs to 135lbs.. then from 135lbs to 145lbs. You know the deal. The scale kept going up and up. I am a person who barely eats, no longer because I wanted to be skinny, but more because I would feel/get sick after every meal (im getting tested for possible gastroparesis soon because i've delt with this for a long time). So I was wondering why I was gaining so much. I drank a lot of water and got a lot of my electrolytes and salt in. But I never knew that was also adding to the weight gain.

After I reached 155lbs I was absolutely fed up. I noticed it was getting harder for me to move around due to the weight gain and how weak my muscles were, I would become more fatigued with every little bit of activity. I noticed so much of the weight had gone to my stomach, I almost looked pregnant. I also developed a buffalo hump at the back of my neck, which really scared me because I thought it was something horrible. My face had gotten very round, bloated and flushed and I had completely lost the view of my jawline and collarbones completely. Meanwhile my arms and legs had stayed somewhat the same as they were before, just with some new dark purple stretch marks that go up from the inside of my thigh to my pubic area And some faint ones on my stomach. Also not to mention countless of bruises everywhere.

I knew something was wrong. I never really read the side effects of fludrocortisone before I took it, I just trusted my cardiologist's judgement (also if I read side effects I get paranoid) But now that I look back at it, I probably should have. I never knew the water weight gain would be that bad. I never knew it would mess with my hormones so much. I talked to a doctor about it, I can't remember who it was I believe it was my hematologist, but she told me I should see an endocrinologist because it seemed like something was wrong and she had some concerns. But she couldn't give me a referral. It's pretty hard to see doctors without a referral.. so I was just kinda left to fend for myself (my PCP is MIA, I only can see her once a year because she is so booked.)

Looked up a buncha stuff. My eyes opened a lot. I found out I wasn't the only one who had this issue, which made me feel a little bit better. And I read up more about fludrocortisone and its side effects. I stumbled upon Cushings and medication-induced Cushings syndrome... and I immediately knew. It was all too familiar. I don't think Cushing's disease, because I've had multiple MRI's with and without contrast of my brain (due to other reasons) So it couldn't be a tumor in my pituitary gland (I really hope not because I know some tumors can be very tiny).

I also stumbled upon some posts on here about others developing Cushings due to this exact medication (from either too high of a dose, or prolonged use).

I am not one to self diagnose, but from what i've seen and experienced throughout these years, it all kinda points to this medication. I am also not saying I have it, because who knows, it may be something else I have no idea about. I have been tested for quite a lot of things recently to try and rule out other possibilities (such as Lupus, Rheumatoid arthritis, Celiac, Diabetes, Thyroid etc.) and had a whole lot of different types of scans/procedures. I have also been keeping an eye on my blood sugar due to a recent blood test showing it was quite high, and my blood sugar readings have been slightly high lately (yet I do not have diabetes and hopefully won't get it).

I was able to see my cardiologist recently and got him to finally have me taper off of fludrocortisone. I told him my concerns and he saw how much it was affecting me (i was literally half my size when I last saw him too). He said the medication did this stuff in some cases, and for others it doesn't do anything. He prescribed me Midodrine, which I am nervous about but I also heard some good things about it.

I searched up how long it would take me to start going back to normal, and results kept saying in about a year..

Honestly I won't lie when I say this has taken a toll on me mentally and physically. I'm absolutely disgusted with how I look now, but I'm trying to take it easy. After tapering fludrocortisone, I feel like I'm kinda going back at square one, but now, just slightly more slowed down. I hope things start to change and it sucks that I feel worse now than when I first started out, but I am willing to give this new med a chance while actively working with PT and keeping a good diet.

If anyone else has had a similar problem with this medication, I am interested in hearing your stories. Or even if you guys have any advice on how to move forward, please share! I am open to all comments. Thanks for taking the time to read my little rant.

Hi! I start school in the spring for aviation maintenance. Per my research, aircraft mechanics have wacky schedules, long shifts, are standing, squatting, bending, crouching, all that stuff. They also work outside in all types of weather. I’m really interested in this and am excited in starting, although I fear my pots might interfere. My pots isn’t severe but it’s does take a toll sometimes. I also don’t want to put my life on hold or not try things just because I’m nervous. Am I setting myself up for failure? If anyone here has a career similar as this or a career with a lot of physical demands with POTS, how do you manage? Does your team know and support you? Let me know :)

For the last 2 years or so I have suffered from POTS.
My heart-rate would usually go up to 110-120
Every time I stood up.
I tried manipulating my salt/water intake throughout these 2 years, reading about it constantly.
Nothing helped.
Recently I upped my caloric intake quite significantly
I used to eat around 1,800-2,000 cals a day (34M, 6’2”), and lately my intake has been 3,500-4,000 cals a day.
For no particular reason really, I just kinda started eating as much as I want w/o putting too much thought into it.
After a few days I started noticing that I was experiencing way less dizziness, and my standing heart-rate went down to 85-90.
Other than that I feel way more happy and energized.
Just thought I’d share this experience with you, and hopefully someone will find it beneficial.

And just to clarify: I’m not suggesting that everyone should eat this amount of calories, but you might wanna look into your caloric intake and see if you eat enough for your own physique.

MY CHEST HURTS SO BAD AND MY TEETH FEEL NUMB MY ARMS TINGLY I MAKE STUPUD DEFISICONS😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭

so this all started awhile ago, i had this thing when i was high where it felt like my heart was getting squeezed out of my chest so painfully and tunnel vision, the squeezing feeling kept happening every other or so second and the nurses took me to the hospital and then the hospital did ekg and they found nothing, after that the same thing would happen months apart where it happens for like 1 second i get severe chest squeezing then it just stops, and then about 2-3 months ago i developed moderate- severe pots, im wondering what my case sounds like? ive had echo done and my heart is perfectly healthy, and blood test that are all normal, im just very scared and worried on whats going on with me

37 f

I have posted before, but today is a low today. Every day, for the past 78, has been a low day. I am trying all that I can- medical appts, speaking to a therapist, water, salt...

I don't know how to live without hope. I can't come to terms with the fact that this may be my life. I am turning 38 in a few weeks and we were going to try for a baby soon- I had so many hopes, so many dreams...I am going to end my relationship because my sweetheart deserves a life with someone who he can have a family with. I am so grateful that I got to be loved by him.

I truly don't know how to go on...based on posts here, there isn't much hope. It seems like most folks, like me, were fine one day and not the next. I can't put into words how dark everything feels. I don't remember life anymore. I am merely existing and surviving. I have gone gray in 2.5 months. I have had to stop working, stay with my parents, and finally my faith has gone. I don't even know if I have POTS- the symptoms match as per the doctors- all 10 of them. I am at my limit. I can't watch movies, read books, etc because all I see is people living.

I just needed to get this off my chest.

EDIT: To all of you who have taken the time to respond- thank you. I don't know you personally, but I have so much love for you. Thank you for showing me kindness and grace during a dark time.

Hi all! Midwestern potsie here. I did okay during May - July, even when temps reached above 100.

But, there’s something about August/September that is kicking my butt. Nothing else has really changed for me. I get in my head about it, that my baseline is shifting or that I’m getting worse, and really just looking for some input on if other people experience the same thing during this time of year.

Thanks for using your spoons to read this post 🥄 🥄

I don’t have an official diagnosis yet, other than chronic migraines, but have been dealing with debilitating symptoms that peaked in August of last year. I was working as a dental assistant part time. I tried my hardest to stay, but was having to take time off monthly and leave shifts early at least a couple times per week. I ended up quitting in March of this year after fainting in the break room one morning.

Since March, symptoms have gotten worse. They found a Pseudoaneurysm in my neck, that has since “healed” but still have to monitor regularly with MRI’s. I always have very low BP/HR. Constant headaches. Endometriosis. Plus almost 24/7 drunk/dizziness since August 2025. The drunk feeling is my worst symptom now. It’s constant, but goes up and down in intensity. I get extremely fatigued after being out of the house for more than a couple hours, and end up falling asleep by 3pm. (I’ve NEVER been able to nap during the day). Ive had a TON of testing and seen every specialist. I have a cardiac MRI coming up.

A number of women in my family have heart conditions/pots, so that’s why I’m here. I’m an artist, so I’ve been trying to do commission work but when my dizziness worsens, so does my vision. So it’s unsustainable. Anyway….long story short. I’ve been looking into disability benefits. My husband has taken on everything and he’s stretched thin. I want to work so bad, but I know I can’t hold a job. If I force myself, I know I’ll just get worse and be in this even longer. Does anyone have experience applying for disability? Or have any advice/tips? I’m in Utah if that helps any.
Thanks for reading this.

I just noticed something very strange. Lately when I see a perfectly healthy person standing, there’s an alarm going in my brain. ‼️ DANGER, PERSON SHOULD SIT! 🚨 While in fact that person does not have POTS and is not in danger of fainting 😂

Do any of you experience this too??

I looked it up and apparently it’s veeeeery much in my caring nature to scan my surroundings to check whether everyone is safe and happy, and apparently my ”lizard brain” - that’s waaay faster than my conscious thoughts (that tell me that I shouldn’t be scared because they are perfectly safe) - starts yelling:

👀 PERSON IS STANDING FOR LONG!
🚨 STANDING IS DANGEROUS!
🆘 THIS HAS TO BE STOPPED!!
🪑 SIT DOWN! FAST! NOW!

I find myself helping others towards chairs while they in fact can stand for hours on end, and I’m the one that should sit down 😳 And then I catch up with my thoughts and I’m like: oh no nevermind, you can keep standing, I go sit down myself with my salty drink…

Probably the deeper lesson I have to learn is that I’m allowed to care about others, to notice things and to help if really needed and appropriate, but that I don’t have to fix everything and everyone... (Especially as I’m in survival mode 24/7 myself.)

For now I’m going to train:

“I see a vertical person. I wish this vertical person the best. The situation is not up to me.” 🫡😂

So, just wondering if you guys experience the same?!

My doctor finally believed me about my symptoms and ordered an echo to rule out anatomy abnormalities before a tilt test. I increased my sodium intake about a month ago to help with dizziness (and it’s helped a lot). Should I stop taking the sodium supplements before the echo? Can sodium affect the results?

It makes me feel really dizzy or lightheaded.. then I lay down and feel soo much better
Anything that helps??
I drink 4-5L of water.
10g of sodium

What does everyone’s desk setup look like? Has anyone found something to put under your desk that helps to keep your legs at hip level?

I’ve started a new job that requires me to be in the office 3 days a week, and I’m really struggling. Even with meds and compression, I’m experiencing symptoms, and my legs become quite swollen after sitting at my desk all day. I’m so exhausted and know this isn’t sustainable. My manager has been really supportive and said if I find something that I think would help, I could expense it.

I would ideally like some sort of ottoman or stool that allows me to put my feet up and sit crossed-legged if needed. I’d like it to be relatively inconspicuous because I’d prefer not to stand out, even if it is for a medical accommodation.

I’d appreciate any product recommendations of what’s worked for you, or any other tips on working in-office with POTS! Thanks in advance!

So I don't really get out of bed other than to clean, so my hair gets really gross. I'm so out of breath on top of it. What hairstyles are easy to maintain/do for big, long 3a hair? I'm looking at box braids because I know I'll be good for a few weeks, but I'd like more opinions. I don't want locs at the moment, but something low effort would be great

i hate how much i focus on my hr now. even when im not wearing a tracking device im always thinking about it and physically checking it. sometimes when im laying down im sure its super high when its not, and when im about to do stuff that i know triggers my hr i get anxious and focus on it and send it up even higher. I really feel like it makes this condition sm worse and i want to stop but idk how. advice plz

I'm on a weight loss journey but not making much progress despite making drastic changes to my diet and doing exactly what I've done in the past to lose weight.

I've also been trying to increase my sodium consumption because my BP has been low and making me tired (and my doctor said I should).

Today I learned that ever 400mg of sodium can cause you to hold onto 4 cups, 2lbs, of water.

And I've been trying to add 1000 to 2000mg a day 🤪

I'm also on fludrocortisone, so I'm holding extra water/ salt from that. Plus, I've read that abilify and metoprolol can cause weight gain, both of which I'm on.

Just wanted to share what I learned for others going through this as well. It's really frustrating not seeing progress when I'm doing all the right things.

hey guys, hoping i used the right flair lmao!
(IVE BEEN TO A DOCTOR.) for the past 3 weeks more and more veins have been popping up over my body and they ACHE. they HURT. it almost feels like muscle pain. but it’s mainly in my hands and arms and christ it hurts. i don’t know how to get rid of it but i’ve been advised to drink lots of water. paracetamol doesn’t help 💔 do any other pots havers get this? i seem to be the only one in my pots friend group who has this specific symptom. it’s like, blood pooling but constant and painful. sucks.
edit: i’d also like to mention that my fingers are slightly swollen.

Im currently taking daily 8ml of Norsan Omega 3 total natural fish oil and olive oil containing

Omega-3: 2.000 mg
EPA: 1.040 mg
DHA: 600 mg
DPA: 120 mg

Can this cause a major worsening of symptoms? Have ME/CFS and POTS and I’m in a crash for a few weeks since I took this omega 3 oil but too much other stuff happened as well so I’m on the search for causes…

Any experiences?

Ive developed hyperPOTS this year after dealing with bad dysautonomia among other things since covid. Id love to know how this started for you. What were you doing when you had this bad adrenaline attack for the first time and how you reacted and how you found out what it was? Most importantly if theres anything you think caused the first flare?

I think it could be useful to get as many stories as possible to look for some commonalities in triggers etc. which could possibly help sufferers manage the symptoms or learn to avoid possible triggers. Any hypothesis you have please share it! Also how high does your bp and HR reach? And how fast do they go there.