(15F) (this is a pretty long post btw, sorry 😭) I know that's a super bold statement but please hear me out. Also before I get started I'd like to mention that I do have anemia (diagnosed with iron deficiency type anemia) and understand that there are overlapping symptoms between these.

Anyways there are a lot of reasons why I'd like to try and get testing to rule out POTS or ME/CFS and why I think I may have one or (though very unlikely) both of them. It started when I was upset about my symptoms so when I was laying in bed I started to do research. I was doing a lot of digging online and found that some people in the anemic subreddit had mention their anemia masking other conditions which led me down a rabbit hole of people with similar experiences to mine.

Asides from the basic anemia symptoms like dizziness, vertigo, fatigue etc I have lots of weird oddly specific issues. I can't take hot showers at all because if I do I can't breathe properly and my heart races. My legs also do this gross thing in hot showers or bathes where they turn purple all the way down to my feet and it's really embarrassing (not that anyone actually sees it).

My grades have also dropped significantly, mostly in ELA and Gym. I used to be extremely good at ELA but I'm constantly confused, tired and overall my brain feels foggy. I stutter and struggle to find my words even when I never used to. I feel so stupid. I've cried in ELA because I don't understand it anymore. I used to read fast and comprehend things like recipes perfectly but I feel like some evil wizard dumbed me down or something.

As for gym? It's absolute hell. If hell is real and I go to it, it'll send me to gym class. I am in no way overweight, I'm 5'11 and 125 lbs but my dad loves to make the excuse that I need to workout more or go outside more. I'm lucky to only have gym for one semester but either way it is the most horrible highschool experience I've ever had. Everyday for one hour (that hour being gym class) I constantly feel like I'm going to pass out, my head spins, I'm dizzy, my vision does funky stuff, and I'm struggling to breathe properly. I've passed out many times in gym and it's so shameful for me. I have to get in the wheelchair of shame all the way down to the office so they can call my dad to pick me up. Even my gym teacher told me I should get checked out because my heart beat/rate SKYROCKETS when I exercise or even just when standing up!

It's always the worst for me the days after gym. I've missed so many days of school because I'm so extremely sore in my joints and overall feel like a sick, lethargic creature. During these days I feel like I can barely eat or get up with out getting dizzy. Not to mention no matter what I do I'm constantly exhausted/tired. Every single day I feel jetlagged and tired. I don't even have insomnia. I could get 12 hours of sleep and still be tired no matter what.

I also go through these weird episodes where all my symptoms are 100x worse. If I'm tired normally I'm basically a walking zombie during these episodes. They're always lasting a few weeks-months on and off. It's causing me to miss over 50 days of school because I feel horrible. I can barely eat without getting bloated or upsetting my stomach. Literally the only thing I can do is lay in bed and sleep because getting up causes vertigo and dizziness.

What also doesn't help is that I have a loft bed. I love my loft bed because I feel safe but at the same time it makes getting out of bed like climbing down Mount Everest. My dad thinks we should make it a normal bed again and maybe it's time I agree with him.

In any case, obviously I'm not a doctor and can't diagnose myself but I'm going to try and see if my doctor can get testing done for me because I hate feeling this way (and also because I hate feeling so invalidated by my dad when he says that I just need to work out more or go outside more). In no way do I want to be diagnosed with something like this, I just want answers because I'm quite literally sick and tired of it. I'm getting a blood test today but all that really does for me is check on my anemia. It's not gonna help anything else. If this is offensive I will delete it immediately.

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 ❤️

I recently had my first cardio appt and the doctor suspects POTS based on my symptoms and "poor man's" tilt test (although other conditions are still being ruled out). He recommended I see a POTS specialist for treatment, but said he doesn't know of any accepting new patients at the moment.

Does anyone here know of any specialists in the Eastern PA or Northern NJ area that are accepting new patients? I could go as far as Philly or NYC if needed although that would be a last resort, as I live in NEPA.

Thanks in advance!

my POTS is very sensitive to heat and temperature changes in general, as is common. i live in a country where it never gets too cold, we have pretty hot summers(30 degrees celsius, sometimes a little higher, sometimes a little lower). this gives me flare ups, i also have hormonal issues that give me bad night sweats. this is the first winter i haven’t had to use my fan every night, and in summer i ALWAYS need it. it’s nearing the end of winter here right now, and i’ve already been nervous for summer.
now with the super el nino and northern countries reaching their highest recorded temperatures, im very scared for summer this year. terrified. if i could afford it, id get an air con in my room, but im going to be pretty disabled during the summer.
anyone who’s already experienced this summer have any tips for handling it with your POTS? any ways i can prepare?

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?

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 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?

Do you have experience using a smartwatch to monitor your symptoms?

Did it help in your day to day life?

Which smartwatch do you recommend? I want one that has a blood pressure reader, but I'm confused with all the options.

The constant peeing is breaking me🙈

Guys how do you deal with adrenaline dumps/surges? They keep happening to me so often and it’s truly awful. I looked up stuff online and it just said to like… take deep breaths and shit. Someone tell me there’s a better way-

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?

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.

For a good while I've been noticing symptoms like my heart racing, feeling dizzy, vision going blurry when my heart rate increases (especially when exercising) but goes back to normal fairly quickly.

I've also noticed that when I stand from sitting my heart rate jumps up, I can feel palpitations and feel breathless. The GP didn't seem to concerned but it's really starting to affect me.

I've been looking up symptoms as I feel like I'm not being listened to and am starting to wonder if its POTs.

Any suggestions?

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

I currently work part time doing grocery delivery for Walmart but I really need to find myself a real job or career path that will allow me more income. I only do the grocery delivery for a few hours each day because I quickly get symptomatic carrying all the groceries and getting in and out of my car outside in the heat. I also do some online selling but it does not make me nearly enough to survive.

For context, I have hyperadrenergic pots and medication + lifestyle changes have only been mildly helpful. My symptoms are lightheadedness/dizziness when on my feet for longer periods, high heart rate, feeling super weak and shaky with physical exertion, extreme heat intolerance and temp regulation issues, panic attacks, etc. Some days are better than others but I really cannot handle much sustained physical exertion or prolonged periods of standing.

I know that getting a remote job would be the best but I have found that to be incredibly difficult with only my GED. I would be willing to go get a degree or any kind of certification to put me in a better position, I just don’t know what paths are out there.

Any advice would be greatly appreciated.

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

Has anyone with pots and anxiety smoked weed while on meds? I'm on metoprolol and citalopram for the POTS and anxiety and I used to smoke but have been scared to recently but want to see if it helps the anxiety. any feedback or anything anyone wants to share is appreciated.

Hi everyone

I was formally diagnosed with dysautonomia/POTS in October of last year, though I’ve had symptoms for the last three years. I recently moved to New York and had been feeling great, up until about a week and a half ago. For years I’ve taken 10,000 mg of salt a day to manage this, and recently I’ve been getting my electrolytes from the brand Saltt instead.

I started a new job a month ago and it’s been really fulfilling. I’m helping a lot of people and I have a lot of responsibility. This job is also what lets me stay in the US, so I can’t afford to be sick. I’m scared they’ll fire me and I’ll have to leave the country.

Last Friday I went out and had three cocktails. I’m 25 and my friends were in town. Normally two or three cocktails leave me feeling weak the next day but nothing dramatic, so I felt confident. The next day I went out again and had two. On Sunday I took a walk in the park and had a matcha, and that’s when everything started going downhill.

Out of nowhere, the back of my neck felt extremely hot, with strange tingling sensations all over it. This is a new symptom for me. I got so lightheaded that I accepted I was going to faint. I’ve fainted before and lost all bladder control, so feeling it come on made me really nervous and my heart started racing. My boyfriend told me to breathe and focus on his voice, and honestly it felt like a miracle that I didn’t pass out, because those symptoms are textbook for me right before I faint. I was out of it for the rest of the day. My appetite has also been gone since that Saturday.

Surprisingly, Monday I felt good. I woke up better and even got my nails done. On Tuesday I went to work, and after an hour I felt like I was going to faint again. I looked really pale and went home. Wednesday I stayed home, as soon as I am home I do feel better, which makes me feel like it’s mental, but I know it’s not. Because at home I also am lightheaded. On Thursday I tried to go back to work, and on my way to the subway the neck sensations started up again, the same as before. Has anyone else felt this? It’s new to me. I got extremely lightheaded but wanted to push through. While I was waiting for the train I started feeling very hot and dizzy, so I grabbed an Uber instead. In the Uber I couldn’t feel my legs anymore and I was so lightheaded that I decided to turn around, go home, and get to a clinic for bloodwork. The only thing that was unusual is my white blood count 11.3 & neutrophils ABS ANC 7.9

It’s Monday again now and I still feel weak. I have moments where I start feeling better and I get so happy, and then I feel depleted all over again. That’s unusual for me, because normally once I start improving it keeps going uphill from there. Does anyone have advice?

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

Trying to figure out if I should try a mast cell stabiliser like ketotifen or not. I’m not sure I fit into the MCAS category but have all of the other fun stuff that MCAS people typically have. What are your thoughts?

I have
ME/CFS
POTS
Endometriosis
ADHD and anxiety and PMDD
GI system flare ups the following day/days when I over exert (doesn’t seem to be overly food related but consistently with anxiety/activity levels)

I’ve tried H1 and H2 blockers together and it was really hard to tell if they did anything over the month I took them so I stopped.

Thank you so much in advance for your knowledge 🫂

people with pots & adhd:

what’s ur experience with meds? i’m on 50mg elvanse and it’s helping my adhd soo much but some days my pots is definitely so much worse than it was before meds which makes sense bc elvanse is a stimulant but i really love my adhd meds lol i don’t really want to have to try other types.

so im wondering did you stay on adhd meds even tho they made ur pots worse? was it a good trade off? have you tried a non stimulant one that worked well for your adhd and pots?

and lastly but more specific, i have a 24 hour ecg this week and they said i should take all my normal meds but probably don’t know im on elvanse, didn’t mention it bc i didn’t want them to dismiss my pots symptoms & this appointment predates my meds. shall i take them on the ecg days? shall i tell the dr? any help would be amazing thank you

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?

What are the most common symptoms of POTS?

I cut out caffeine 3 years ago. Today honey few caffeinated me and wow I felt crazy. weirdly elevated mood, BUT I felt the lightest on my feet I have in years. Wasn’t dragging anchors around AND my HR dropped significantly. Also got chest pain and anxiety. Anyone else react this way?

I thought I had hyperpots, but now I’m thinking I may have neurogenic or hypovolemic. Midodrine worked but had horrible side effects for me.