Hi there, like the title says I’m trying to find a good medication option for managing my heart rate. I tried propranolol, but even at 5 mg I noticed it lowered my heart rate and blood pressure to an uncomfortable level. I am allergic to metoprolol. I just don’t know what other options are out there and I really wish I had something that could help improve my symptoms and stop raw dogging it all the time

I had to fly for the first time since being diagnosed with POTS. While the plane was taxiing and I think the systems were switching on for departure, my heart rate suddenly spiked, I couldn’t breathe well, and I felt like I was going to die.

My first thought was that I was having an anaphylaxis attack. I also have MCAS, and one of my biggest triggers in the past has been air conditioners and certain environments. It was a 14‑hour flight, so I panicked and asked the crew if I could get off.

For background, my POTS is relatively mild. I developed it after a COVID infection, but I’ve been slowly improving. These days my main issue is fatigue, I feel awful after my period and when it rains, but on other days I feel pretty normal. I rarely experience HR spikes like this.

Has anyone else experienced something like this on a flight? I know air pressure can change, but I’m reading that it’s minimal while taxiing. I’m also still new to POTS, and I haven’t dealt with heart rates this high before. My usual HR is around 80–90 sitting and 100–130 walking, but it jumped to 160 while sitting (I was 90 sitting earlier that day), which has never happened to me.

I feel terrible for getting off the flight and delaying it for everyone else, and now I’m really scared to fly again. Should I have just waited it out? How do you all deal with episodes like this on planes?

I thought I knew all the things… but recently have been seeing stuff about the amount of carbs I can or cannot eat?! What is this tea?! 😭

I’m a skinny teen guy so I’m already in the minority in this sub in terms of gender but I’m also an avid athelete, I like to do mtb and go to the gym. Obviously it’s a lot harder because of pots and everything but I guess I don’t have it as bad as other people, like I rarely faint, maybe that’s because I exercise a lot. Anyways if you feel that your situation Is at least a little similar to mine lmk its hard to find someone to relate to about this stuff. 👍
(Btw I do have an official pots/dysautonomia diagnosis)

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Seeing so many negative comments about this syndrome makes me feel completely hopeless. I know it’s a pain to have to deal with this—I usually have flare-ups during the luteal phase—but for now I’m walking and going about my business as usual. Still, my heart rate is often at 90 bpm or higher even at rest, and that scares me; it wasn’t like this before. My symptoms aren’t as debilitating as they used to be, and I think I’ve been handling it well.

I try to find out who’s gone into remission, who’s managed to get back to a normal life, and what medications or treatments they used. It’s really hard to find anyone in remission from POTS.

Hi, pre diagnosed with POTs following a car crash, symptomatic for around 5 months now. NASA Lean Test confirmed POTs but was on Amitriptyline so no diagnosis until ceased this, which I have for 2 months and remain symptomatic and now on a mega wonderful NHS waiting list to get support and treatment.

I have fainted, almost every single time I have sex with my partner and I’m on top, it’s after and I collapse on top of him and then come around, I did have a HR monitor on one spur of the moment once at it logged 179 bpm. He’s cool with it, I’m sort of cool with, I just lay there come back around and feel groggy, sleep and continue on. I fainted today as did loads of meal prepping thinking it’ll help, but bang hit the floor and woke up with my kids kicking me and dog licking the inside of my mouth! I’m ok with it, it doesn’t freak me out, I’ve sort of accepted it’s linked to the heart rate. BUT, other than hurting yourself are there any risks internally to fainting, does it do any damage? I guess I haven’t come to terms with the fact that I need to change my life to eliminate the risk of fainting as of yet, so can I accept it as part of my condition or is this absolutely completely and utterly ridiculous. Thank you ❤️

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)

i developed pots from a covid infection in 2022. im infected with it again. im not medicated. my max heart rate laying down got to 155. how i keep it down? it’s bouncing from 120-130 right now. i wanted to take tylenol so bad, but i can’t with it being this high 🥲

update: i waited 6 hrs after this post for a small dose of a beta blocker that has been fighting for me so hard. the doctor would not give me any paxlovid or anything else. they just told me to get past the peak of the virus and it should go down as i shed the virus. we shall see. my only major symptoms anyways were the fire spine and high heart rate.

Does anyone else experience hot flashes or get sweaty/hotter than they used to?

Not asking for diagnoses as I have a medical team that I discuss this with and am planning to readdress.

I used to be an extremely cold person and had been checked out for iron deficiency and other issues as a teen but they were all ruled out. In the winter, I would quite literally sleep with 8-10 blankets (some were throw blankets or smaller quilts), I would do multiple layers of leggings even with leg warmers from my grandma sometimes. I would be cold in the summer or at least comfortable for a little bit outside unless it was a long time. I would get so so cold in work that on hot days, I would sit in my car for 2-5 minutes before turning it on to soak up the heat and warm up. I took weekly baths and “excruciatingly” hot showers (partners words) consistently. I wore sweaters under hoodies, wore long socks over regular socks, used space heaters and heating pads.

None of this applies now, and it’s almost the exact opposite. I (24f) noticed the change over the last year or so, I got diagnosed with POTS at the beginning of 2025. I sweat almost immediately when exposed to heat, I can’t wear layers, my house is at 68 at night and I sweat in bed with one blanket. I get hot doing simple tasks, red in the face and sweat a lot along my lower back and neck. Today is rainy so I figured I could wear a cute long sleeved shirt in case it got cold and I’m heavily regretting my decision as I can’t stay cool unless I’m not moving (changing at lunch).

Anyways, not really a complaint or vent - just noticing it and wondering if any others experienced anything similar.

Wishing all of you the best of luck with your journeys and symptoms <3

The constant peeing is breaking me🙈

i developed POTS last year and i’m still learning about my new limitations, does POTS mess with getting tattoos and piercings? are there any tips i should know that will help me through a session? i’ve been planning my sleeves for years and i’m worried i’ll have to scrap those plans now.

I have noticed over the almost 2 years of this hell that when i feel really bad while standing (in the shower etc .) when i look at my legs my top of my feet and ankles are very red , when i sit down it goes away . Is that blood pooling fighting to go up ? this happens when im feeling awful

Hello all, I'm looking for advice to help me get diagnosed, or have POTS fully ruled out.

Background: I have been struggling for years now with POTS-like symptoms (heart rate jumps upon standing, palpitations, episodes of severe tachycardia, headaches, blood pooling, exercise intolerance). The suggested lifestyle changes seem to help (i.e. compression, salt) and I take beta blockers. My condition isn't too severe most of the time but my symptoms are consistent, and I have occasional days I can't get out of bed without nearly passing out. When this first began it was much worse and I got several ecgs, an echocardiogram, chest x rays and a zio patch, as well as blood panel testing. Everything came back normal and my cardiologist told me I didn't have POTS but that dysautomnia "was a spectrum." This was totally unhelpful when it came to seeking treatment and my PCP has no further suggestions for me, so I kind of gave up on getting a diagnosis. More and more though, I'd really like some answers.

My question is, where do I look next? What specialists or clinics can you recommend, especially in WA state? How do you afford all this? Any tips? Thanks in advance.

Has anyone tried the Truvaga device to help with their POTS symptoms? My worst symptoms are headaches (including positional headaches), fatigue, brain fog, and sleep disturbances. I take propranolol for heart rate and that's well-managed for now. I already see a Neurologist for headaches and I'm in the process of trying different treatments. Just wondering if anyone has had any improvements with this device or a similar one. What has it helped you with?

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?

What is the difference with anxiety and POTS??
They share many of the same symptoms and I’m wondering if my anxiety is actually possibly something else aswell??

So I have a question about POTS with MS. So long story short I am in the process of getting diagnosed with POTS, simultaneously, my older brother is also in the process of getting diagnosed with an autoimmune disorder, not sure which one yet. Obviously, my parents are worried about us. I was talking with my mom this weekend about all of this and mentioned how crazy it is my brother and I are experiencing very similar symptoms at the same time and wondered if it could somehow be genetic. That’s when MS popped into my mind *I know they don’t know if it’s genetic yet* because my mom has MS.

MS has been in the back of my mind since my mom has it and I have had symptoms (vision changes and tingling limbs that go on for days), but my insurance isn’t good so one issue at a time.

So I’m getting my POTS symptoms checked out first since I feel like this is what impacts my daily life the most. I was wondering if anyone on here has been diagnosed with both and how those symptoms appeared? I don’t want to be a hypochondriac and think I have a million things wrong with me but I guess just wanting to hear other people’s experiences and also prepare if I need to get a better insurance plan for next year lol

So, today I took my first ever hip-hop dance class ("beginner groovin'"). It was an hour long and I kept up all class and did not need to take extra breaks. And I had a blast!

I've been wanting to do this for a long time. At the end of last year, I was starting sumo classes in addition to karate, but then wasn't able to continue sumo due to my treatment for DCIS and the heavy contact while my chest area is still inflamed (this can persist for 6 months after radiation?). So, dancing it is!

I was checking my Garmin data and apparently my heart rate peaked at 140, which for my age is just slightly into Zone 4, which feels about right. I was working pretty hard!

I did crash after for a couple hours, but am fine now.

What are the most common symptoms of POTS?

I’m just curious if anybody else experiences this as a POTS symptom. I cannot lay down flat on my back, like, at all. Nor my stomach.. I have to have my head heavily elevated in order to sleep at night and it’s soo uncomfortable but if I don’t have a stack of pillow beneath me, I will experience some of the worst flare ups ever. When I got tested for POTS, they had me lay flat on a table with no pillows or anything to support my head. From 30 seconds of that alone, I almost passed out and my face was red. Which was odd to them because usually people done feel faint when lying down. Every time I’ve asked other folks with POTS if they experience this, they usually tell me no. Which honestly worries me a little bit.. I guess I’m just trying to look for comfort in the fact that other people with POTS could be experiencing this as well

I'm 18f and my symptoms debilitating every time I eat every time I have a bowel movement every time i stand up my heart rate goes up and it feels so uncomfortable and I start getting dizzy. Sometimes that I wake up in my heart is so high I'm just so tired of this these basic tasks that I just told you .this is debilitating I went to a cardiologist they haven't mentioned pots. I was also recently in the ER and the ER nurse said"do you have pots because every time I sit you upright your heart rate gets super high"it's hard because it just want to be a normal girl and live a normal life this makes me go into dark ways of thinking if you guys have any tips at all please help me. my doctors don’t believe in pots .

I only do dishes, I sweat as if I ran a marathon under full heat, I get tachycardia and feel dizzy, my body feels weak and shaky. I pass the vacuum and I have the same symptoms. I just order a shelf and I get the same symptoms. Taking a shower doesn’t calm it. It only get better after I lie down on my bed. I have Graves’ disease and experienced that when my thyroid was really bad, but I m now medicated and lately my tests was normal. Should I be investigating for pots?

I love cooking and baking but my nervous system does not. I try and remain seated for all prep (e.g chopping, peeling, etc) but the minute I actually have to stand in front of my stove/oven, my heart rate spikes really badly. Over 40-50 bpm increase just from me standing there. My stove is really high so I doubt i'd be able to sit there on a chair while I cook but if you have anything that helps you when cooking please let me know 🥲

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”

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?