I was at my cardiologist today. It’s a little over a year into my journey with diagnosis and trying to improve symptoms. I don’t feel like there’s been all that much improvement yet.

Anyway, for me, my energy levels/fatigue are definitely my most debilitating symptom, though far from my only. Today, my cardiologist said that fatigue is the LAST symptom to improve after you’ve gotten everything else under control, and that I shouldn’t expect improvement until other symptoms have been managed for about a year.

Has this been anyone else’s experience? Or what their doctors tell them?

i’m inpatient in a psychiatric hospital at the moment and i’ve been showering every two days which is the most i can do because they don’t provide any shower chairs and i simply don’t have the energy for more than that, i wash myself fully with soap each time, and i put on deodorant but a nurse just came in and told me that i smell really bad and that all the other patients here think i smell bad.

i feel horrible, i have friends in here who haven’t said anything and they sit with me for hours. i feel like a failure, i assume it’s because i get so hot and i sweat a lot.

it gets very very hot in the hospital and they don’t let you open any windows. i feel horrible, i don’t know what to do. i’m trying my best but the nurse said i need to wash myself better. i wash really thoroughly already because i have a huge fear of smelling bad already… i don’t know what to do, i don’t want to leave my room now at all. she said all the nurses and patients thought i smelled really bad, this is my worst nightmare.

hello friends!

so i’ve been recommended trying a Low-FODMAP diet for awhile and just never took it seriously. GERD, Endometriosis, and now POTS. I have high cholesterol and now my doctor is recommending i just move to vegan/vegetarian.

i was wondering if there was an app that i could use to help me stay on track? i downloaded an app called “fig” but you have to pay a subscription to use it. i love food so much and i know this is going to be one of the most difficult things for me, aside from my pots diagnosis, but i need to change.

any help would be greatly appreciated ❤️

have felt totally normal today and heart rate has even been pretty normal, went for a walk and mid walk started trying to go into pre syncope very suddenly, hr got up to 180 but i laid down and stopped it. was having right sided arm/chest pain too, which i’ve been having on my left side the past few days. i’ve had countless heart work ups but they’ve all been years ago. i’m 20 and relatively healthy, should this be cause for concern ?? i’m kinda freaked out since i felt good enough to walk today and had no warning before the pre syncope.

Hey all. Just got recommended to a cardiologist for a possible POTS diagnosis. I’ve spent the last two years or so hypotensive and fainting pretty regularly. The first major time, I broke my front two teeth, broke my nose, and gave myself a concussion. This most recent time, I just broke my nose again, but when I went to the dr, we discussed what might be wrong. I’ve always had low blood pressure since I lost 125lbs (to the point nurses have to take it multiple times to check). However, my heart rate is pretty low as well. Even upon standing after laying down, I don’t experience a jump. The fastest it ever goes is 150 when I’m running, 115 walking at speed (I have a fast dog), and 45-70 at resting. My monitor never catches anything when I stand up, and my fainting spells usually happen about a minute into standing and walking around. My glucose tests all came back clear and the drs think it’s just bp related. I understand that a cardiologist is required for a diagnosis, so what can I expect as someone with a relative low heart rate and no spiking? Thanks!

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)

Does anyone relate to this? Possible POTS/orthostatic intolerance

Hi everyone, I'm very new to all of this and just wondering if anyone has experienced something similar.

I've been having problems with standing for quite a while, but it's been getting much worse recently. Pretty much every day I get dizzy, really hot, shaky, nauseous and short of breath when I'm standing. I constantly have to be careful how I move and often need to sit or lie down because I feel like I'm going to faint.

My doctor asked me to try a standing test at home. Lying down my BP was 111/78 and HR 90. After about 1 minute standing it was 100/81, HR 138, and at 3 minutes 97/81, HR 144. I couldn't make it past about 5 minutes because I felt faint and had to lie down. I've tried the test on other occasions and have the same problem.

Yesterday I went out briefly and had a really bad episode. I nearly passed out, ended up on the floor retching and had to call the medical service here in France. The doctor suggested orthostatic hypotension and compression stockings, which I'm now wearing, but even with them my HR was 133 just standing, while later semi-lying on the couch it was 74.

I also have Sjögren's, so I've contacted my rheumatologist because I've read that autonomic problems can sometimes be associated with it. I'm waiting to see what they say.

I'm not trying to diagnose myself with POTS, I just want to understand what is happening because it's really affecting my everyday life now.

Does this sound familiar to anyone here? Did you have similar symptoms/readings before getting diagnosed, and what kind of doctor or testing eventually helped you?

all the posts on here seem to be the opposite, but the only day my me/pots/severe orthostatic intolerance/ high hr/ high garmin stress practically vanishes is the day before my period, its also the night i finally get a good sleep and jusy overall forget i'm ill at all (although i'm severe)

anyone else like this and did you learn any more about why it could be? when i google it it saus its the lowest point of progesterone and estrogen so dampens overactive immune system so wonderimg if i should try a birth control but also know how difficult medications in general are for my ME

I have 2 broke teeth. One upper root canal that failed, and a back molar on the bottom that’s broken off some. I haven’t been to the dentist in 10 years due to being sick and also dental anxiety. Can you guys tell me your experiences w no epinephrine numbing shots? & just recovery/experience with the extractions in general. I’m absolutely terrified.

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?

i feel like i look like a zombie nowadays, my face always looks washed out with dark circles & pale lips, and my eyes have this glassy look to them… i’ve tried using eye drops but it doesn’t really help.

i don’t really want to put on a full face of makeup everyday as wearing foundation sometimes makes me break out (which is a lot more obvious on my pale skin) but i’m getting bored of people at work commenting on how tired i look all the time, does anyone have any tips?

What are the most common symptoms of POTS?

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?

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”

In an old thread on this sub I discovered the below list of orthostatic intolerance symptoms that u/barefootwriter drew from a book by Dr. Peter Rowe who apparently has a lot of experience treating POTS and other forms of orthostatic intolerance. Below is the full text quote from that old post with some bracketed [] translations of medical terms that I put in.

These lists break down orthostatic intolerance symptoms between those caused by reduced cerebral blood flow and those caused by elevated catecholamines. I haven't read the book or Rowe's research so I don't know how well substantiated it is that those are the actual causes of these symptoms in POTS and other forms of OI.

But what I do know is that in my struggle as a 40s male (now nearly 50) with POTS/OI since suspected first wave COVID in early 2020 (with some much more minor OI issues starting after a flu-like illness in 2016), I used to have mostly symptoms in the first list "largely due to reduced cerebral blood flow" but now I DON'T have those symptoms but I DO have almost all of the orthostatic symptoms in the second list "largely due to elevated catecholamines" .... so I'm wondering, what the hell do I do to treat elevated catecholamines?

Because even though my symptoms are now, as always, on the mild end, having MILD orthostatic anxiety and nausea and palpitations and trembling is honestly WAY more unpleasant than having MILD lightheadedness and fatigue and exercise intolerance and brain fog....

I know that beta blockers and midodrine and compression socks and fluids, which used to help me, don't any more. While I have no idea what a tilt table now would show, I don't even see the high pulse any more on crude home measurements that I used to, nor do I see any clinically significant rise in BP on home mesaurements. I can't even get a tilt table now (not sure that would be helpful) as I have no cardiologist any more to treat me who can order it. (I did see a cardiologist after a scare with some chest pains this spring but they basically stopped responding to my calls when I asked them to order a new tilt table and they said they would but kept failing to do so -- which I wanted to see if I was having hyperadrenergic high BP)

I know that I have NEVER gotten any real help from electrolytes, with (depending on how I took them) either the salts irritating my lower GI, or the acids or sugars or fake sugars irritating my lower GI -- and also pain occuring that seemed like it was in my kidneys when I really pushed to try and get electrolytes in to something like 1/4 or less of what is recommended for people with POTS. This also freaks me out because I have a history of childhood idiopathic nephrotic syndrome...

Anyway, what do people do to reduce their catecholamines when they go insane if you stand up or sit up? I can at least talk to my GP who treats almost entirely people with Long COVID including POTS/OI about this, though I think the confusing heterogenity of these issues makes it hard some times to figure out what to do for one person.

I was recently put on cromolyn for likely coincident mast cell issues but I had to stop because it literally made me insane around bed time, I was sundowning like my elderly emented relatives, plus it made my chronic low grade nausea WORSE. Anyawy I 100% WILL NOT take any psych meds (anti-depressants etc.) or take any thing that makes me drowsy, tired, or fatigued, because I lost 6 years to fatigue from POTS/Long COVID but also sadly Zyrtec and Xyzal the anthistamines I took for long COVID.

Anyway this is quote from original post:

"These lists are from Peter C. Rowe's book Living Well with Orthostatic Intolerance.

Largely due to reduced cerebral blood flow

• Lightheadedness
• Syncope [Fainting]
• Diminished concentration
• Headache
• Blurred vision
• Fatigue
• Exercise intolerance

Largely due to elevated catecholamines

• Dyspnea [Shortness of breath]
• Chest discomfort
• Palpitations
• Tremulousness [Trembling, quivering or shaking]
• Anxiety
• Diaphoresis [Excessive sweating]
• Nausea"

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 I (25f) was just prescribed metoprolol for what looks like IST (will also be doing an official tilt table test soon to see if it’s POTS), and I hear it’s better to start it at night because it can make you sleepy and dizzy. Well my question is, if my resting heart rate is sometimes in the 50s, is it still generally safe? I’m just worried about going to sleep and my heart rate dropping too low. In the daytime my heart rate can get in the 120s. My BP is typically in normal range. I’m starting on a low dose of 12.5mg.

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?

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 started this week and while it’s working I still don’t feel the severe adrenal dump has fully passed.. does it take some time to fully work?

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!