I had to do a stress test yesterday on a stationary bicycle but I passed out after probably like 6 minutes into the test. I'm in bad shape because I experience a lot of symptoms during/after exercising so I tend to reduce exercising (which probably isn't a good idea oops) Does me passing out have to do with POTS or is it just because I'm in bad shape?

I didn’t know mobility aids were a thing until after I was diagnosed and looking into it. I realize and understand now why people use them as I’ve always just dropped back into bed, sat down on toilet, or sitting on the grounds/floors anywhere I go for the longest time. I really want to get one that I can use at my apartment (carpeted) and anywhere else. My boyfriend however thinks I should wait until I see the specialist for treatment to see if it helps first. But I don’t have insurance anymore and I feel like he doesn’t get how miserable it truly feels in the moments and the desperation to have some sort of seating. (He’s an an amazing boyfriend my supporter and he ultimately said its up to me but I know he will make fun of me cuz that’s what we do to eachother we bully eachother it’s all love I promise 😭💕 ) also how do you explain it to others if you don’t necessarily need it ALL the time because you don’t know when the flare ups are going to hit. Also how do you deal with people if they’re like “well a doctor didn’t tell you to get one so it doesn’t seem necessary” (i haven’t had that opportunity to discuss it or try medications with a specialist due to no insurance anymore)I know I need one every day at home for getting ready and doing tasks there. What kind do you find most beneficial. And just uplifting encouraging thoughts and words of empowerment. Because no one seems to understand how miserable this condition is except for us. Please help me if it’s worth it. I mainly just need a place to sit at all times. Also carpeted floor makes it hard and I live on the third floor.

Hello! Earlier in the year, I had a tilt table test ordered by my primary doctor. I am 21, 140 lbs and 5'4. Symptoms included: random fatigue, unable to tolerate heat, syncope when standing, general dizziness, vertigo when standing for longer periods of time, and probably more I can't think of from the top of my head. I had done the tilt table test without the medication. They had me fast for 6 hours prior. They had only shifted me from laying down to standing straight up, taking my pulse and blood pressure constantly, while test took about 30 minutes. Test results from the doctor said that my results looked normal. When I was up vertically, my hr ranged from 120-150 consistently. When lying down it was 70 or lower, he said there were no indications of a medical issue. I'm not a doctor or anything, but isn't what my heart rate did, POTS? I'm going to bring it up to my primary next time I see her because I'm just an average person and don't have any medical background, I was wondering if you guys might have opinions as well? Thanks!!

hello!

i was diagnosed semi officially by my allergist with a “poor man’s tilt table test” - and will be getting an official diagnosis in about a week. i apologize if this question has been asked before though!!

my question is: do yall struggle with dizziness / vertigo / nausea while walking long-ish distances? i feel like im slowly inching towards the point of needing to use those stupid electric wheelchair things they provide at stores. is this a POTS thing, or something in and of itself? i want to do absolutely everything in my power to not need a wheelchair, but every day i feel like im getting closer and closer to it.

thanks in advance :)

Is this common in pots or maybe something else? My hr and BP are fine and as I'm supine I'm not blood pooling

I even feel like this waking up in the morning before I've got out of bed

I don’t want to write a sob story on here, because I don’t think many will see it, but im just feel lost. I was diagnosed in September with POTS, and my experience has been sort of mellow for the most part. I haven’t had extremely bad flares or serious symptoms.

But as of lately it seems to be bothering me more often, and I’m starting to lose hope. I get dizzy when I stand up, and I get these phantom feelings of my heart racing even when it isn’t and it scares me. I have severe anxiety and it only makes things worse, and I can’t tell anymore if it’s my anxiety or the POTS making me feel the way I do.

I’ve never had serious enough symptoms to take medication everyday, because when im laying down or sitting my heart is normal and it can be normal when im walking around sometimes too. And on the days I feel like I need it I avoid taking it out of worry I’ll always need it.

Will it always be hard? Do I have to live like this forever? Do I ever get better and get to live how I did before? I feel like I’m throwing my life away being stuck in my bed because I feel like shit. Please help me.

For me this is what I would assume to be discribed as groin ( inner tendon feeling from crotch to inner thigh and down) pain/strain, without cause. (on both sides), feels, "snatched" together (pulling on both sides), or like I want to ride a saddle (stretch them)- all other typical POTS symptoms with it, at typically triggering times. I didn't ever experience as starkly, as after hospital stay with potassium low ect. , this is the only thing I'm distinctly experiencing outside of hose discribed typical symptoms..

** and I experienced a recent few ER trips with a finding of "low potassium", and I haven't had a day without varying symptoms since.

How to limit symptoms; particularly nausea and dizziness after waking up? I am ✨struggling✨🫠🫠

Y'all I'm taking any and all suggestions.

The issue is I throw pillows and blankets off of my bed in my sleep if I get too hot. I can't keep anything fragile near my bed for this reason because I'll break it. The issue is in the winter, I'll do this but then wake up cold, and have to gather my things and fall back asleep. The only tips I find out there seem to be getting side rails. But I'm skeptical...it would probably work until I found a new way to throw things off. Materials of the blankets only seems to make a difference in the summer when it's hot. In the winter, the moisture wicking materials don't allow me to get warm enough.

I know that chronic fatigue and brain fog is very common with pots patients. I’m not yet diagnosed but the more I learn, the more convinced I am that it’s what I have despite my doctors hesitance to diagnose and explain the condition while treating me as if I have the condition (and it helps) That being said, I went to my doctor recently just wanting some clarification on tracking my hr and blood pressure and whatnot. We ended up talking about my chronic fatigue and brain fog being so persistent despite being on beta blockers, qulipta, and having a very well rounded diet of high protein/low carb/ along with reasonable amounts of fiber. I’m very serious about my health and am as active as my body allows. Swimming regularly as a lifeguard and slowly incorporating more types of exercise like yoga,Pilates, weight training, and walks. She decided to test my vitamin d levels and apparently they were very low along with low but within normal b12 range. Is this common in pots? I only ask as many posts have indicated brain fog and fatigue being the hardest parts of the condition to treat. And if it is common, (I start b12 and vitamin d supplements the doc is prescribing soon) I can let yall know if the supplementing helps.

This happens worst when I have a flight longer than 2 hours but I flare and it effects my calves like they feel heavy and tingly is it just me? Is there a reason

That’s all that’s the post

I (19f) saw a cardiologist today (I know some of you guys say they’re no help - but I do have a family history of heart stuff) and we’re running all the normal tests (7 day monitor, echo, stress test) before moving on. He took me very seriously and listened to my concerns, which I was very worried about because I’ve heard some horror stories.

He validated my concerns by telling me what I’m experiencing is very much not normal, but all my EKG’s and recent bloodwork have been A-okay. (which is comforting knowing I have a history of heart problems in the family)

My primary care doctor talks to me as if I do have PoTS and referred me to cardiology to be safe before jumping to conclusions.

He told me today that if nothing is structurally wrong or nothing is TOO abnormal in any of the tests, then we can discuss medications and lifestyle changes if I so wish and what our further options are. He made it all very clear there are multiple options and I’m pretty much in control of what happens with my body but that he wants to help to the best of his ability.

I never name dropped any names of conditions, just my list of symptoms, making sure to emphasize the ones that I have daily and that “bother” me the most since I’ve gotten used to most of it

I’m just very relieved that I was taken so seriously and not asked if I’m just anxious all the time and that he wants to rule out any serious issues it may be genetically

One step in the right direction..and I’m grateful to have someone take me seriously

Has anyone tried using a chiropractor to help with your POTS symptoms? Apparently there is a chiropractor clinic in my city that specializes in the nervous system/ dysautonomia. Has anyone tried and has any success with it? Wondering if it's worth trying it.

For those of you who have been or are currently taking beta blockers, do they lower your BP? Which beta blockers won’t lower BP?

I’m taking 2.5mg of bisoprolol (been 2 weeks) and my blood pressure is normally on the lower end but it has consistently been anywhere from 90/50 to 99/60. It’s making me lightheaded and short of breath but it’s helping my heart rate. I’m wanting to see if a different med will help me more without lowering my BP. I’m not sure if my cardiologist will let me and I feel like he’ll tell me “I told you it would, they all will lower your BP” so I wanna go into my appointment asking for a different medication and knowing facts. If he doesn’t want to put me on a different med I’ll stay on bisoprolol bc I refuse to go back to no meds

(Bonus if you were on bisoprolol and switched to a diff beta blocker for the same reasons as me)

I already have a tilt table test scheduled, but I have been monitering my heart rate and almost everytime spikes up 41 to 50 bpm immediately after standing but then it calms back down. Does this indicate I might have pots? I've heard some people say your heart rate has to stay high for the 10 minutes but if it spikes and then goes down is that okay? For example, just a minute ago when I tested it was at 66 and spiked up to 108 and then went back down to 100. It can spike more than that though

Is coat hanger pain related to stress?

Hi everyone, I've been dealing with a lot more struggle walking around for even a short period of time without becoming out of breath or light headed. And because of that I've been thinking about ways to help,I'm fully diagnosed and was prescribed medication but I still have this problem, so I was thinking about getting a cane to assist me but I don't know if I should, so could the people who use a cane give me their opinion or information? I really appreciate anyone who looks at this and gives me their time.

Hi!

I ask because I was recently diagnosed and prescribed metoprolol. I already take depression/anxiety medicine daily as well as a GI medication that I’m trying to get off of. I really want to try my best with lifestyle changes first, as I don’t want to add another medication with another possibility of side effects and difficulty weaning if I ever need to come off. Also, I’m just worried about the long term impact of taking all of these daily tbh. I’m feeling kind of bad about my decision, like I’m doing the wrong thing by not just taking the beta blockers, but I noticed a lot of you are also not on medication for heart rate either. Is there a reason why?

Is this normal? I literally cannot control my body temperature anymore. I was walking around the grocery store shivering. I was wearing a thick denim long sleeve dress and couldn’t stop shivering. I live in CA so it’s about 65 degrees not bad. But I kept forgetting things so I kept walking back to aisles and staring at the items because I was so cold. I forgot to take my medication today. I know it helps a little but I have been super forgetful lately and the looks I got today shivering in the grocery store made me want to just be swallowed by the floor. I got home and have been under a blanket and still feel freezing. Am I crazy? Does this happen to anybody else?

Today, I went to the cardiologist to find out, what has been my affliction. After explaining my symptoms, and holter/blood. He immediately said POTS. No tilt table but he did order a Stress and ECG. I would just like ideas on how to manage my symptoms, as it will be a while before I can take the tests and possibly medicine.

Seeing a new cardio who does tilt table testing to finally see if I have pots. But I’m super scared I’ll be sick for days following the test. Are tilt table tests the absolute #1 best way to diagnose pots? Would love to hear your experiences!!! Tia :)

Hello all, this is my first post here and I've been lurking for a bit. I recently wound up in the ER for the first time, where they kept me overnight, ran a battery of tests, and basically gave me two Gatorades to drink in the end. This is the abridged version, but I have been seeking treatment with my doctor since then, and her working theory points to POTS. I have an appointment with a cardiologist in two weeks to continue figuring it out officially.

While I wait, what I'm struggling with is hydration. More sodium is helping. I have Trioral, Liquid IV, Redmond's salt, and Magnesium Glycinate on hand. I'm drinking 3+ liters of water a day, most with 500-1000mg added sodium or sodium + added electrolytes. And it is helping.

But it feels like there's no balance point. Sometimes when I drink a big glass of water with sodium, it feels like there's too much water and I'm not getting enough effects of the sodium. It's helping, but it's not helping enough.

Sometimes I'll mix up a concentrated glass of 8 oz water and 1/2 tsp salt + Mio, and slowly sip that until my heart palpitations and dizziness die down. And then I often start to get a distinct kind of headache that only goes away if I drink more plain water. Like it's too much sodium at once, not enough liquid.

It's like no matter what, the ratio is wrong somehow, but I don't know how to fix it. Every cup feels like it's either too concentrated or too diluted, and no matter what, I either have heart palpitations or a headache by the end of each day.

I've seen recommendations to drink 2L of water a day (so... less?) to 10L of water a day, but clearly the amount also depends on what you've added to it, because too much water alone feels like it will just strike me dead at this point. I keep making jokes to my husband that I'm a vampire and I don't have enough of my own blood, because dark humor is the only thing keeping me going. (Sidebar: I would absolutely love to hear your jokes, too.)

So my questions:

• Is it possible to exist in a balanced state for longer than half an hour at a time? How do I get there?
• How do you figure out how hydrated you are in any given moment?
• How do you know if you need more sodium, more water, or both? Like what does it feel like in your body?
• How TF do you stay ahead of it when every single liter of water and electrolytes feels like it was mixed with the wrong proportions?

Back in May I suddenly got super dizzy and sick after getting up from my lunch break and ended up leaving work early. I went to urgent care where they did a EKG and took my blood pressure while sitting and standing and found nothing abnormal and said it could be POTS and then I went to my PCP for a follow up where they used the one test that sits you up and turns your head really fast. It came back negative but even the doctor said it was a pretty unreliable test. Got another EKG done and some blood work. Went back to my PCP and was diagnosed with Vasovagal Syncope. All the symptoms match my one major attack and by the time I saw my PCP the second time my symptoms pretty much vanished. Well recently they’ve come back and I’m a bit hesitant to say it’s just Vasovagal Syncope mainly because my BP and Pulse go up instead of down when I sit or stand up. Is this worth going back to the doctor for and bringing up the suggestion of POTS? My symptoms tend to come and go but when they come they can get pretty bad before I’m fine or they’re super super mild for a little while.

i finally got to see a cardiologist, get a tilt table, had the cardiologist basically confirm i have POTS (but didn’t put an official diagnosis in my chart??). cardiologist then gave me a referral to neurologist who specializes in POTS, so i can get further treatment. months later, today, i got a letter from the neurology office saying they received the referral and booked an appointment for me that was the ‘earliest available appointment due to high volume’. the appointment is NEXT YEAR!!! November 2025. i’m so frustrated. i feel like i really need to see a specialist atp bc i feel like shit constantly. and now i have to wait all that time, and the eventual appointment will probably ultimately be short, disappointing, and unhelpful anyways bc the doctor probably sees a million other people a day just like me. :/

i’m going to look for other neurologists in my network who can see me sooner but this shouldn’t have to be so hard to begin with and it’s hard to find ones that specialize in pots :/

Are there any vitimans that you guys take to help you out ? Or any supplements that help combat the exhaustion?

I’m just wondering if anyone else experiences this. You can’t breathe and swallow at the same time obviously but when im eating and swallowing food my body freaks out and thinks I’m not breathing and I get a surge of adrenaline like I need to breathe immediately. This also happens when I’m trying to fall asleep.

I don’t have POTS, I have a similar condition called inappropriate sinus tachycardia. Basically I have a high heart rate that doesn’t necessarily correlate with changes in posture, and I don’t really know what causes it.

Anyways, I almost always have shaky hands, but especially when I’m having a flare up. This might sound a little silly, but I’m really tired of people pointing it out. Oftentimes people lightly joke about it, attributing it to my mood, in my head I want to correct them and tell them I’m just like that, but that absolutely kills the vibe. It also happens with people who already KNOW I have that issue. They’ll joke like “are you good?” “she’s so excited she’s shaking” and it really makes me feel insecure and shitty.

I feel like it always gets pointed out but I also don’t think it’s fair to be like “actually I have a heart condition” when it’s supposed to be lighthearted or out of genuine concern. It just annoys me so bad I wish it would go away. Sometimes I even play into the joke to deal with the awkwardness. I don’t really care enough to bring it up on its own bc I just don’t think it really needs to be addressed unless someone has genuine questions about it.

So I wanted to open a discussion about a weird scenario I've been experiencing. I have the flu and last night I could obviously feel I had a fever. It was severe enough there was no denying it and my body hurt SO bad and I had really bad chills. Also I felt better after taking fever reducers so I KNOW I had a fever but it wasn't registering on a thermometer.

In fact it was at first and I was watching it climb, checking it over 20 minutes and it went from 97.6 to 99 and then started registering again at 97 even though i could feel it still getting worse. I checked to see if the thermometer worked on other people and it was accurate plus I've used it in the past and saw regular POTS fluctuations registering.

I've also tried 4 different thermometer and the same thing has happened the last 2 times I've had w flu and covid. The reason this worries me is because I can't tell how high my fever is getting. Does anyone else have this issue? I don't even know what logic could be behind it but I know I have thermal regulation issues.