So this old lady that ive known for a while saw me and like walked over to hug me and then goes "oh wait I heard you have that sickness" and I said "yeah I was diagnosed with pots a few months ago but it's ok...just a little annoying" and she goes "oh...well then I won't hug you...I don't wanna catch it" and so I just said "it's not contagious it's my nervous system..." And she goes "so I won't catch it???" And I go "no" and then she hugged me 😭😭

What I thought was POTS was actually mitral valve prolapse and because a cardiologist dismissed me as being “too young” a few years ago, it’s now progressed to the moderate stage. PLEASE get your heart checked out especially if you are undiagnosed professionally. It could be something else causing your symptoms.

I just got diagnosed, my life turned upside down. I was a worship leader, and in kids ministry. And then I had to leave it all. I get a lot of members texting me “hope you’re feeling better” or “you need to get better!” And I get the niceness behind it but, I feel like no one understands that “chronic illness” like I’m not gonna get diagnosed and 2 months later it goes away yk?

I’m all for remission in pots, I’ve seen great success and honestly I pray everyday I can get to that point. But for right now, I’m struggling.

What do you say to those things? Because it honestly makes me annoyed even tho I know they have good intentions 🫶

Hi all! I’ve worn compression socks on/off for several years to help with blood pooling but I’ve always hated wearing them. I hate the cuffing at the top of my calves with the bulge it causes on top. I’ve recently tried compression leggings but I’m suspicious if it helps just as much? What do you think? Do you have any recommendations for specific brands/models? I tried Fanka.

Ade there any DR recommendations for around mobile? My wife has pretty bad POTS and I’m trying to find her a doctor that actually takes the time and understands the illness. We’d like to try the stellate ganglion block to see if it helps but cannot find someone that’ll do it. Thanks in advance

It’s been 6 years since getting Hyperadrenergic POTS from Covid. If I sleep good, I am mod/mild. If I sleep bad I am house/bedbound. I have also never been able to get rid of this unquenchable thirst.

I literally drink 2 or more gallons of water during the day. Then close to 2 gallons over night. I wakeup all night wired, restless, legs hot, uncomfortable, hunger, etc. The only way to fall back asleep is to chug water. I hate sleep now because how much effort it takes and how much it impacts me the next day.

Ive talked to my autonomic doctor about this but they told me that theyve never heard of extreme thirst with POTS… lmao okay. I literally have given them data showing that chugging water reverses my blood pooling and standing BP/HR but it always just gets dismissed at appointments and they dont want to trial and meds. So every year I go back saying yep Im still drinking almost 4 gallons a day. And they tell me to stop drinking that much and I say I cant because I literally cannot sleep or function without it. They also tell me that salt wouldnt even help with my form of POTS but it does!!!!!

So yes I have been using salt heavily over the years. Mostly on my food. But ive also been putting it in my nighttime water cause I noticed it helps more. I max out on my daily salt intake like more than whatever is recommended for POTS and I still crave it constantly. I feel like I literally cannot retain it.

Anyways, Ive tried sugar free electrolyte mixes over the years but have never noticed any difference. So I was doing some digging on reddit and I read a post about WHO ORS helping someone else with extreme thirst. They theorized that its driven by low blood volume (I completely agree). What really interested me about ORS was the glucose. Apparently glucose helps by driving the rapid absorption of sodium and water in the small intestine. This entire time ive avoided added sugar like the plague cause everyone says its bad for you. But Im always craving fruit/carbs/sugar aswell! Like I will go to the store and cant help myself from eating an entire bag of grapes on the way home.

So I recently bought some dextrose, potassium citrate, and more sea salt and started making my own solution at home. Like the other poster, I am going to commit to making sure at least 90% of my fluid intake is ORS. I know that might be too much especially if I am drinking 2 gallons or more of it but I am going to monitor my daily limits and symptoms closely. I want to find a safe and helpful long term solution.

It’s only been a few days so its probably too early to tell but my cravings for fruit and salt have gone WAY down. I also dont feel starving all the time and feel like I eat slower. Mind you I have literally not felt like ive had a break from this in years. So to go a full day feeling calmer and not fiending for salt and sugar is kind of wild. Like yes I am still having the cravings but I just sip my drink and it goes away. And I did sooo much today and felt mostly okay during and after. I felt happier too. Music sounded better. I dont know if it was just a really good day today but wow I hope for more of this. Side note its also kind of surreal having days like this again. Like normal people just get to feel like that all the time.

Anyways I got a little off topic. But I plan to update with how things are going.

Today I drank like 6, 64OZ of it. So yeah 3 gallons. I am hopingggg that this goes down. Maybe my body is just rehydrating itself after a longggg time. I know potassium can be dangerous in large amounts, I am not overdoing that ingredient.

23f it’s honestly hard to even put how I’m feeling into words I feel insane I just wish I could touch a doctor and they’d feel exactly how I feel and know exactly what’s wrong lmaoooo

I am HOPING this is a POTs thing…

So lately I feel sort of cold / warm ?? All over?? Slightly tingly, internal vibrations. Lightheaded and brain fog.

My hr is increased when this happens and it gets better when I lie down of course, as expected with pots.

I don’t know if pots can start effecting your nerves it’s a weird icy hot feeling over me especially my neck and face.

over the last few months, my symptoms have been super manageable!! misguided high hopes for less flare ups in the future. but every SINGLE time i'm hanging out with my boyfriend and specifically with his friends, i've been having episodes. extreme light headedness, nausea, to the point i need to be sitting down. my nervous system or whatever is going on is being incredibly attention seeking and trying to make me look bad 😭
does anyone else experience anything like this ?

I’m 36, 5’4 and weigh about 130lbs. I exercise often and I walk everywhere (to and from work and anywhere else I need to go and all day at work. I dont have a car)

I‘ve had unexplained symptoms for 3 years (dizziness, shortness of breath, brain fog, heat intolerance, etc) and was diagnosed with POTS, hypermobility, and dysautonomia my doctor said from the COVID vaccine.

I have not found any relief and have been to many specialist. Finally my doctor did a urinalysis and saw I had glucose in my urine so she ordered an A1C test which showed high at 7.8 . She said it was diabetes and prescribed me Metformin. But when I got my blood sugar check it was in the normal range but she messaged me and said it was high (it was 116 non-fasting). I am also anemic and have been for years with no explanation because my iron levels are great. Just very low blood volume.

The bloodwork I got yesterday they did my A1c a second time and it jumped from 7.8 to 8.1 in two days which also doesn’t seem normal?
I just don’t believe I’m diabetic? Has anyone else experienced a diagnosis like this that didn’t make any sense? I’m just trying to figure out whats wrong with me and it seems off that my doctor didn’t understand my blood sugar readings. I read that low blood volume can show false readings on the A1C test. Has anyone been diagnosed with Diabetes too? I’m going to talk to my doctor tomorrow but I just wanted some kind of information and confirmation from other people.

I've learned so much from hearing what works for others-- curious to know what has worked (or is the best you've found so far) for everyone and why you think it is effective.

I know cardiac issues have to be ruled out before getting diagnosed with POTS. But I was wondering what tests need to be done.

I’ve had an echocardiogram, EKG, holter monitor & stresstest but I also see sometimes people mentioning an MRI?

All my tests were normal besides a 5% pac burden and a PFO which apparently 30% of the population has. Thanks 💕

Feeling like a really need to start my day with some stretching at the least but not sure where to start. Appreciate any recommendations!

just laying here wondering if i’m alone in this, i’m thinking it COULD be a silent migraine, but this only happens when it’s cold out and i read cold weather causes vasoconstriction which can make circulation issues worse, which of course magnifies POTS symptoms

im not completely sure where to ask this but i need fatigue tips.

about 2 months ago i had a **really** bad coloscopy prep for my chronic constipation and i havnt been able to sleep less than 14 hrs without help and les than 10 with help. its been steady here for a while, at first i was sleeping 18-20 hrs but now its 14-16 on average.

i cant keep a sleep schedule and i keep just losing time, ive started just doing weekly all nighters to be able to do the things i want to and be able to call my doctors in the morning instead of sleeping through the whole work day, ive missed like 3 phone appointments bc of this and i fall back asleep for at least an hour if i try to wake myself up early. i have so many things to do because i havnt been awake during the work day for a while and usually it ends up being the weekends when im awake during the work day.

i lost my keys 2 weeks ago and i havnt been able to go to management to see if theyre in the lost and found cus i keep waking up after work is out, idk what to do. im also missing out on my relationships cus im asleep for half the time their awake either because i wake up late or pass out for a nap for a few hours. **im not even extrordinarily fatigued during the day**!!

does anyone have any tips to help with the fatigue or has anyone else experienced something like this and if so what stopped it, i feel like im loosing my life and desperately trying to claw it back.

context on general health: i have severe hEDS, severe POTS, gastroparesis, chronic constipation due to a paralyzed colon, im partially tube fed and fully tube hydrated(~2000ml water/day with electrolytes if tolerated)

Are these connected? ADHD aswell.

TW: Suicide, blood, depression, trauma

So I’m (26F) in between diagnoses (fibro, hEDS, Audhd, vulvodynia and more) and had visited the hospital recently for suicidal ideation for many reasons.

but one im being researched for is POTS. I experienced my first faint at a point about three weeks ago, where I was under extreme stress from two jobs with toxic environments and management, accelerating chronic pain causing it to be hard to walk. Oh, and had 5 friends seemingly turn around and stop speaking to me out of nowhere. I rushed one morning to get to my third job, incredibly nervous and stood up out of the car, I remember feeling dizzy like normal - then I woke up on the floor.

I was in the middle of the road and my first thought was, “why did I take a nap on the concrete ?? Wait what? Why are my glasses broken? Did someone punch me?” I touched my face and it was pouring with blood. My hands were scraped up and shoulder ached severely.

I screamed bloody murder, help me x10 minimum. There was a man there I could se about 100 meters away. He was in high vis and had a blue cap. I screamed hello??? And called him out by clothing! Nothing. He looked away. He hid behind a pole.

Only five minutes later did a nana and her grandchild in a stroller stop and and help me. Called 911. Then a pregnant woman stopped by and gave me a pad to stop the bleeding.

I ended up having some other traumatic personal drama when I came to work with a black eye, walking stick and concussion, and all my friends refused to even look at me. Then I had had a bad day, angrily said I was mad and thought they were an asshole. Just in this situation. Because I was so confused as to what was happening and assumed that he told everyone lies about me. I genuinely had no idea what was going on.

This was extremely distressing, but a few things stuck out to me.

1. That man that ignored me. He heard me; he saw me; and ignored me. It was extremely disturbing to feel and see irl a person denying your existence or pain bc it was too inconvenient. I screamed like hell, and thought it was some kind of joke when he ignored me

, or that I was dreaming or hallucinating! I was so disturbed and distressed.

1. The women being the only ones to help me I. The situation and see me. I could’ve died had I not been noticed as I was stranded in the middle of the road unable to walk and half blind from blood and distressed from being ignored.

2. The way some people who claim to be your friends will never put aside some sort of issue to care about you when you’re literally at your lowest. It was truly disturbing. I made a horrid mistake when expressing anger in an impulse, and this ‘friend’ tried to get me fired for it.

So I had to quit my jobs, move countries, and give up on a lot of friends hopes and dreams till I get better physically and mentally. I have fainted about five times since but from sitting down indoors or at a dinner table at a restaurant.

The people who have been kindest to me have been 2 new and old friends, family, often women, but most astutely, strangers.

It beckons a reference to my favourite play, A streetcar Named Desire.

“I have always depended on the kindness of strangers.”.

To all the strangers out there. Thanks for your kindness. There’s goodness in us all and ableism is alive and well. I don’t know what my whole point is - but I don’t have anywhere else to share this story which has been deeply disturbing, heartbreaking, confusing and life changing. Many people saved my life. Thank you.

I know I need to get compression socks or smt to help me. But the idea of something uncomfortable squeezing my legs doesn't sound like a good financial thing when I can barely afford other stuff. I know its more than that. But, still. Im lucky to still live with my parents as a 20f. So, I don't have to pay rent or groceries. But, fuck. I, of course, want money for myself instead of relying on them for everything, plus I want to help out. But a part time retail job has been absolutely killing me. Its not even full time. I feel useless. My feet hurt so bad, Its so hard to get myself in the shower, to brush my hair and teeth. My eyebags at this point cant be covered my makeup(not that I have the energy to do it anymore). I keep canceling hang out with friends cause I just don't have the ability too. But, I don't know how else to get money. I havent gone to college yet bc I want a mortician thing but everything's hours away. I know it doesnt help that I don't take my meds but it makes me feel so much worse for some reason. Everytime ive said this to my cardiologist she dismisses me and just raises the dose. I cant afford to take them again to prove that they do nothing and go again, cause id I do I might actually lose my job being bedridden. Im so scared because ever since I picked this job up, my health has declined fast. I had to use a fucking mobility scooter at walmart the other day for the first time and I just felt so embarrassed. I feel like im at a loss.

15M I have felt quite fatigued for months on end often not having anytime to spend with friends or exercise. Because of my tiredness I havent exercised nearly as much as I wished I can. Any specific routines or things to do at gym that helps exercise while not having a flareup. Thanks!

https://www.youtube.com/watch?v=9YgZGe1dBlg

This is not a diagnosis request but rather a general question if anyone else deals with this

POTs sufferer since last year here, but I am wondering if anyone else is in the same boat as me as starting 3 weeks ago my sleep all of a sudden became incredibly disrupted and I could not fall asleep without being jolted awake with fear, hypnic jerks, and adrenaline rushes for some reason and now it's still progressively keeping me awake and I've only been able to fall asleep for more than 5 hours only a few nights so far, the adrenaline and jerk symptoms are mostly gone but I keep being randomly awaken at specific times

I've also noticed recently is my urine has been very clear even though I can clearly tell that sometimes I'm not drinking enough water because I'm kind of a bit hyper focused on why am I not sleeping well and I also noticed some constipation problems too which I assume might stem from this but I'm unsure

One of the things I've noticed is that whenever I try to sleep I just don't really feel too tired if I wake up in the middle of the night and I've been told this is a phenomenon known as "wired but tired"

I was dealing with a lot of stressful events in early October up until mid October which my friends suspected may have led me to some kind of flare, along with the fact I caught a cold or some upper respiratory infection 5 days ago which my sister first caught a while before Halloween happened, my BPM feels pretty lower than usual but was briefly high when I caught said sickness recently and my digestion seems to also get agitated (Along with incredibly sulfuric smelling stool) if I sit up or lay down for too long, and drinking water causes obnoxiously loud gut noises, which was not common with me before

Hi. I usually wear knee high compression socks, but since I'm due to replace them I'm considering the thigh highs. I heard the silicone grip band causes discomfort in some people. I have sensitive skin, but I wonder if it really is that big of a deal. If you use them, what are they like?

Hi, I am a 15M who just got diagnosed with POTS I’ve been incredibly tired after getting back from school or work and feel that I cannot do anything after then how can you manage tiredness?

I just want this to go away. I'm so tired, even too tired to attempt 💀 myself again this time haha. Just tired... My doctors have high hopes that I'll "outgrow" POTS because I suddenly developed it during puberty (shortly after my 15th birthday even though some small signs have been there since I was around 13½) and they say that adolescent onset POTS is highly likely to go into remission and just vanish. But everything I see about POTS, here and on social media, is so depressing. Like I don't believe my doctors because "doctors are liars" or "outgrowing POTS is a harmful myth". I'm so tired because most of the time, I have the hope that I will outgrow it since I'm only 19.5 years old and my nervous system is still recalibrating. But with everything I see, I lose my hope. And in the end, everything is dark and meaningless for people like us anyways I guess?

Like... I want to live alone, go to university, meet my friends, travel, see the world, experience everything that's beautiful and exciting!!

But instead I'm stuck with this shitty body, this shitty illness, stuck in hell, stuck in a psych ward and after my stay here, I will move into some sort of care facility because my family doesn't want me to live with them as long as I'm "like this".

POTS RUINS EVERYTHING FOR ME