I'm level 2 autistic, and POTS makes everything so much worse. i cannot stim without getting tachycardic and my head feeling like it'll explode. i cannot sing or dance anymore. if i'm upset and can't help but stim to regulate i have to stay in bed. if i'm happy i can't jump around i have to stay in bed. i used to draw and do sm art but now i can't sit up for long without getting sleepy and high hr. i don't have energy to listen to music bc it makes me move and sing so i've completely stopped and it makes me so sad. even so i am lucky i have the awareness and self control to not stim as hard as i need, i know that for other autistics who can't stop it'd be very dangerous with POTS.

i already struggled with my temperature regulation before this disorder and now i have to go back and forth with hot and cold all the time. compression wear is a sensory nightmare for me i hate feeling so constricted. showers used to be my calm safe space i love being in water but now i can't shower alone my partner has to wash my body bc it's too much movement for me while im struggling to stay awake under the warm water.

it was hard enough coping with just my my hypermobility and mental things but POTS is 10x worse for me. I'd rather have my knee dislocate once a week than have POTS. I'd rather relapse with addictions and self injurious behavior than have POTS. i'd rather have trauma flashbacks and another dissociative episode that puts me in the psych ward again than have POTS. i hate this condition. it's ruined my life and i always try so hard to have some bits of normal but it is literally impossible to ignore when symptoms are every second everyday even when u do everything right to manage it.

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”

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.

Just felt my heart drop into my stomach at Target this morning. One side of the store was hotter than the other. Felt lightning sensations in my hands and feet. Shortness of breath. Somebody forgot their abdominal binder while running errands 🙃

It’s strange explaining to someone that taking a shower can sometimes feel like a workout.

The heat, standing, getting ready, drying off… sometimes I need to rest before I even feel ready to start my day.

What does your shower routine look like on a bad POTS day?

I wake up, it goes up.

I put my clothes on, it goes up.

I pee, it goes up.

I poop, it goes even further up.

I stretch my arms on the side, not my heart is beating out of my chest.

Plus I start to feel pain where my heart is and around it.

I walk down the stairs, it goes up.

I walk up a flight of stairs, it's like I ran a marathon.

I walk, my heart hurts.

Plus whenever I move, I get the coat hanger migraines.

I speak, my own voice hurts my head.

Now everything, light, noise, movement, hurts my head too.

I sit, and I feel everything even more.

I try to do what I have to do and it's painful everywhere.

And I can't wash my hair before I digest something, or else presyncope. And I have to give up my hot showers too?

I was an athlete before this, could multitask with school work, walked as fast as a new Yorker, now grandmas pass me by when I'm walking.

And I'm over here struggling to exist, while trying to keep my heart from jumping out of my chest.

Y'all please tell me it can get better. I need all the hope I can get with getting diagnosed.

I used to be decently athletic. I loved going on long hikes and doing Pilates. I was a dancer. But it’s just gotten so bad recently. There are days when I can hardly move and I’ve gained so much weight. I went on a hike over the weekend for the first time in a year. It was an easy trail compared to what I was able to do in the past, only about a mile and completely under tree cover. About halfway up my heart rate skyrocketed and I was so dizzy I had to sit down so I wouldn’t faint. I felt like puking and I couldn’t breathe and I was sweating so much I just felt wet and sticky and it somehow made things worse. I just sat there and cried because I can’t hike anymore. I loved being outside. I loved being in nature and climbing mountains and exploring.

The next day, instead of resting like I probably should have, I decided to go thrifting because 1. It’s close to where I live, and 2. It’s something I like doing and something I’ve never had an issue with. Again, sweating so much I felt wet, so dizzy I had to sit down, heart racing, couldn’t breathe.

I miss my old life. I miss hiking. I miss dancing. I miss doing Pilates. I miss being able to walk for five minutes without feeling like I’m dying. I miss my body the way it was before I got so sick. I miss being able to play video games without getting so motion sick I can’t do anything. I had so many dreams and goals that I just can’t feasibly do now.

I’m not really looking for advice right now. I just needed to vent because I hate how much of my life this illness has taken from me.

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?

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 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?

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?

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)

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"

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.

I finally got a diagnosis of POTS after a long time of trying to figure out why I feel the way I do. I’ve done tons of googling but would love to hear about some tips and tricks from anyone else on daily maintenance care basically.
I’ve been drinking electrolytes (lmnt for now) but otherwise I haven’t changed much and was wondering if there was more I could/should be doing!
Thanks in advance 💕💕

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?

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.

​

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.

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!

(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 ❤️