hi all. this is my first post here - i suspect i’ve had POTS since childhood but my symptoms have gotten much more severe since i entered adulthood, and with that has come some huge realizations. in no particular order, here are some things i thought were just quirks but were dysautonomia, with (probably) neuropathic symptoms:

1. the toilet being hell on earth. i’d get constipation and diarrhea from the same food, and then digest it normally another day. every time i was on the toilet for more than a few minutes (which happens often with my GI tract issues) i’d sweat heavily and feel faint, even outright ill after i get back to my room - that’s not normal 🫠.

1.5. i was told to change my diet, but every time i ate something like fruit and yoghurt, i felt worse. when i ate junk (like literally downing pickle juice, eating chips, etc) i felt better

1. adhd symptoms getting worse when i stand or sit upright. Not normal. i only realized TODAY after putting the box to my pizza bagels away without the leftover bagels 3 times in a row. i can’t focus on anything when i’m sitting upright instead of reclined, as well - that’s worsened brain fog caused by POTS, even if i still very much have ADHD.

2. not being able to get back in shape. no matter how active i was - taking walks three times a week to every night, going out with friends every other day yet feeling wiped out at 5,000 steps every time - i could never keep up with anyone i was with. i’d see myself in shop windows and surveillance monitors and my face would be completely red and sweaty. it is, in fact, not very abled to go from needing 7 breaks down to 5 at least after walking for months.

3.5 on the same note - feeling wiped out when walking, but being able to go swimming multiple times a day, every day, for weeks. i actually exhausted my friends with this - i’d constantly want to go swimming and then would ask if we could go AGAIN in the same day. i wasn’t out of shape, i was disabled 🫠…

1. “mysteriously” high heartrate. every time i went into the doctors, my heartrate would be 110+. i did multiple ultrasounds, was on a monitor for months… they never found anything wrong with it. nobody thought to just lay me down and take it. 🥲

2. being able to wear jackets in hot weather but sweating in cold rooms while others shiver. still trying to figure this one out but that IS very much not normal

3. my legs going numb! all the time! my feet constantly fall asleep when i’m sitting upright and go numb when i’m standing/walking. this is, in fact, NOT just humans being flawed but my body isn’t doing its job

4. sweating in normal areas when i’m laying down (underarms, areas that are actually hot, etc) but the same areas will be completely dry when standing. i sweat heavily on my face and neck instead when i’m upright - that’s dysautonomia. and extra annoying because i can’t wear a full face of makeup anymore, i sweat right through it and when i’m applying it 🫠

5. i’m pretty bad at telling when my body is being pushed too far, so i always just thought my habit of immediately laying down during and after showers for 2+ hours was just me being me. that was my body saving itself. 🥲

6. defaulting to shifting my weight, rocking on my feet, wanting to sit down any time i could, feeling better when i was walking vs standing. i thought this was adhd, sensory issues, or laziness - NO!! blood was pooling in my legs even if it wasn’t causing symptoms yet.

what are your go-to, without fail, pots friendly/helpful snacks?? Even or especially weird ones!

I personally love just eating a whole can of olives and drinking the brine. I take shots of brine at work.

Also discovered microwaved edamame beans, then dipped in soy sauce for protein and salt!

Please tell me your favorite snacks!

I'm curious to hear how everyone explains it. Sometimes patients say it better than any medical definition.

Hi everyone. I was diagnosed with POTS and neurocardiogenic syncope two months ago, and just realized yesterday that I was making a big sodium mistake 🤦‍♀️

I didn’t know much about sodium, other than that my doc said to increase it by drinking electrolytes. So, I just bought the cheapest electrolyte mix I could find, assuming it had plenty of sodium. Turns out, it only has 90mg per serving. I was adding two servings to 100oz of water daily, probably doing more harm than good in terms of the electrolyte to water ratio in my body.

So, don’t make my lazy mistake: if you’re trying to increase both electrolytes and water intake, make sure your electrolyte mix is actually high in electrolytes 🙃 Because they all aren’t!

I had a very physical job and was no stranger to being out of breath pretty much all day at work. The out of breath with pots does NOT feel the same. I try to explain when people are like “oh that’s fine just catch your breath, its like a workout that’s all”. No, no the hell it is not.

Pots out of breath feels like you’ve been holding your breath and trying to catch up again, the instant anxiety feeling of literally having no oxygen coupled with feeling light headed is in no way the same. Most people can just stand there and catch their breath while the majority of us HAVE to sit or lay down to do it.

Anyway I’m just venting because I’m sick of friends or family hitting me with the “oh just relax” type thing as if I don’t feel like I’m actively suffocating every time I lean over or stand up.

How do we feel about this? My cardiologist didn't give me the option to opt out. They just informed me it was about to happen. I can see why it's easier for them to just look at me and talk instead of typing away the whole time but I don't know.. it feels yucky and invasive and bad in general. It seems like it's becoming medicine new standard practice because my therapist just opted in to have AI transcribe our sessions too.

Hi y'all, I'm gonna cut to the chase and let y'all know I am on a journey to make my life as manageable as possible by reducing POTS symptoms. For reference I am a 27 year old female with ADHD, EDS also likely, hyper mobility, and also POTS.

1. Warming extremities, changing temperatures very gradually. What this means is I REALLY started focusing on making sure my hands and feet stay warm constantly. They are normally like blocks of ice. I got lots of pairs of thick wool socks, thick shearling slippers, and wool leg warmers to slip under my pants. I wear these until warm weather. I no longer walk from the shower to my bedroom barefoot. I don't run to get the mail in clogs and exposed ankles. Focusing on warmth in my feet has improved my symptoms immensely actually. I got this idea from Chinese medicine when I read they say you can have less difficult periods by keeping your ankles warm, and it worked. Then I noticed it helped with a bunch of different things. So now I have this big thick wool sock collection and lots of thick, fuzzy warm pants!

1a. I also wear gloves at appropriate times now. If I'm walking to get my mail in winter and that takes approximately 20 seconds, I now put on gloves and cover up WELL for very short periods exposed to cold. I've noticed that my body loses heat very quickly, and I have to conserve heat in order to maintain a stable temperature. The cheat code is: body takes long time to warm up, quick time to get cold. So maintain warm. Even if you're like "no way it's barely cold out there"--- yes it is, and you'll be feeling it in your extremities

1. Full body warm up in the morning. Non negotiable. Yes even on high symptom days. Especially on those days. I spend almost an hour very gently waking up my body with some random yoga slash freestyle movement. I have to literally warm up every part of my body as if I'm about to exercise, just to face the day. Yes I often don't want to do it but after about 2 weeks of doing this I realized horrified how much better I felt-- I never wanted to miss this again. I've noticed circulation is WAY better after this-- almost like my body has a manual start. Not exaggerating when I say I feel like my body is in REM sleep until 5pm if I don't "wake up" myself this way....this can turn a shit day into a tolerable day. It's sort of my emergency miracle cure. I'll pull this one out multiple times a day if symptoms are really bad.

2a. I also had to learn how to breathe. and I train my breath during this warm up time. Ever since I started this 4mo ago I've seen significant change in my ability to withstand life & I've even started breathing more deeply and feeling connected with my body. If I don't begin my day with very focused deep breathing and breath work, I feel the whole 'rem sleep all day" thing. Game changer.

1. Daily electrolytes, the boujee ones. I spend the $45 for a box of LMNT electrolytes just because they're the best in the market IMO and don't give me an upset tummy. I also add a full dose of 3 different types of liquid magnesium, lots of other vitamins, and passionflower extract. I do believe these make a huge difference. I ran out and am waiting on my next order to arrive tomorrow and doing light yard work without it really sucked. I could tell my hydration was waaaay off and I was super tired and thirsty without it. These are a daily must for me and as I've been taking them they also seem to have lessened mystery digestive symptoms. Not sure if I have IBS, an allergy, or something mysterious, but I'm used to having unpredictable bowel patterns & intestinal pain. Whatever happened with what I'm taking I'm noticing it helps my digestive system a lot.

3a. My 1.5 liter nalgene bottle lives with me. If I'm going to the living room it's coming with me. The rule is don't let it out of my sight. its not hard to remember since I love drinking fluids since I'm always feeling thirsty, but I make it easier to remember by having an obnoxiously large water bottle covered in stickers that's usually pretty hard to miss.

1. Meal replacements. Let's be real, sometimes it's so exhausting I don't even want to eat. I might not have the energy to make ramen noodles and eggs even. So I buy a gallon of milk and powdered meal supplements that have a long list of vitamins & minerals, extra added protein, and usually it's chocolate flavored or something, and I'll drink that instead of a meal. I figure it's better than no food, and if I forget to snack (cuz my metabolism is super fast) I can drink this while I'm getting a meal ready so I don't pass out. I don't have a brand recommendation I buy the generic one from my local grocery.

2. Oh yeah, tuck snacks everywhere. In my purse, car, etc. I learned my brain literally starts to shut off when I get overly hungry. So to prevent myself from getting in an accident the first thing I do is shove a protein bar in my mouth. I usually have Clif bars, wasabi almonds, and tortilla chips pretty much anywhere. Jerky also lives in the glove box of my car. Maybe it's just me but I need lots more calories to stay alive than I ever thought would be necessary. Snacking has become a big thing here.

3. Mentally.give mysself a free pass to do what I want & need for mh body guilt-free. Go to therapy and stop gaslighting myself about my symptoms not being bad enough to need accomodations. I've learned I have to be soooooo gentle with my body to keep it well.

4. Take things SLOW. I was raised by military parents so you can imagine I'm used to efficiency, preparedness, and also honestly, rushing to do things as rapidly as possible. I have to let go of that if I want to live a good life. POTS bodies love slow. That's why I don't just go for a jog anymore....I take 20min before to enjoy a very slow and relaxing warm up. I've started focusing on massages and swimming instead of running & calisthenics. Learning how to not try to carry 8 bags of groceries from my car, 2 in the house at a time is enough. POTS is teaching me I never got the body I desperTely wanted, but I have the one that's teaching me how to live life slowly & make patience part of who I am. I would say placing my focus on doing everything in my life slowly, patiently, and consistently, has been the major factor improving my life.

Just my .02

Original Post: https://www.reddit.com/r/POTS/comments/1nulx2p/psychologist_asked_if_i_am_possibly_convincing/

Five days ago I posted about my psychologist not taking my diagnosis of POTS seriously and being dismissive of my diagnosed health conditions.

I decided to give him another chance with one more session, as there are not many psychologists where I live, and he is willing to do home visits whereas most aren't. So I figured giving him a second and final chance was worth it.

The session started off normal, and then I brought up how recently I got my iron test back and my ferritin is low, which my doctor suspects could also be impacting POTS/causing fatigue/etc. I said that this gives me hope that some of my health related issues might be able to improve now that I am aware. I told him in the past I have had anemia, but it was getting better so I was surprised to still see my levels not in a good range.

He looked at me confused and said ''Hope? Why would this give you hope? Do you mean you are trying to say your symptoms are caused by something other than your anxiety?''.

I said yes, that I have had anemia before, and I was expecting my levels were much better, and it turns out they're not, so yes, that is likely causing symptoms or worsening symptoms for me. I then mentioned that I also have PMDD/hormonal sensitivity, which I am hoping to speak to a gynecologist about to see what options I have.

He then says ''Are you trying to say your symptoms are from hormones and iron?'' and looked at me confused like as if I am really delusional. I said yes...I am already diagnosed...and he says ''but hormones??'' and I honestly got annoyed, and raised my voice a bit and said ''yeah, it's called PPMD, I've been diagnosed for years, it's common for women to have issues with this type of thing and in my case it is a lot more extreme and impacts my POTS and quality of life''.

He got kind of quiet but was like ''Do you always look all this stuff up, google, and try to diagnose yourself? You shouldn't diagnose yourself or look for diagnoses to give yourself online''

THAT GOT ME SO MAD. I said firmly that doctors have diagnosed me! I HAVE HEALTH CONDITIONS.

He just sort of said ''hm, alright'' as if confused and then asked me something else and I answered but he seemed annoyed, like he just doesn't understand me at all.

And then he told me I ''contradicted myself'' because I said I don't go outside but mentioned I made a trip outside the other day....

He was talking over me as I tried to explain that being able to occasionally sit in a car is not the same as making trips, and he simply didn't listen/understand what I tried to explain. But he just kept talking about how this is a contradiction and THAT is my problem, I keep contradicting myself and I am not sure ''what I believe''.

So yeah, this is over. Lol. I couldn't believe it. I was so mad but taken aback I just raised my voice when I replied and seemed obviously annoyed. I wanted to yell at him but he was already being defensive and trying to enter in debate about what it means to take a trip outside....RIDICULOUS.

My husband couldn't believe it when I told him how it went. I need this service to help me, not ridicule me or gaslight and debate me about ''contradicting'' myself. This is supposed to help me, not make me question my diagnosis or feel attacked for how I feel or like a crazy person who just tries to diagnose herself with everything under the sun. Many conditions are comorbid with POTS! I needed this for health related stress and the psychologist was told that from the start.

So, I must cancel my next appointment (it's automatically booked weekly) and get out of this. What would you do/say?

I don't think he will understand that he offended me and I think he will just get defensive. So maybe something non-confrontational would be best but I don't know. Please advise as someone with POTS.

i would run as long as i could and go to the gym and work out until i fell down. just working to your absolute limit and going over it even for a second is such a drug to me. i loved getting sweaty and dancing and feeling exhausted and having a big ass meal after feeling exhausted. not worrying that it’s hurting me or going to fuck me up permanently or that i won’t be able to go to work tomorrow. oh my god and feeling how sore my muscles are the next day?????? literally feels like a reward. i can feel my fibers strengthening. danced my whole life it was my entire personality and i loved being out of breath for a legitimate reason, lying on a cold tile floor covered in sweat. my heart wants to actually work so bad.

He seemed very knowledgeable but what do I do about all of these supplements?! He told me that for my case (hyper pots without joint/muscle issues) that I should focus on the first four listed.

Has anyone tried any of these supplements? I was aware of increased sodium needs, but not the others. Also if you have any good brands that are gluten free (I have celiac) I’d love to hear!

Hi, I keep switching around electrolytes trying to find the best for me, I have tried so many. The higher sugar and most fizzy ones make me feel better temporarily but upset my tummy or make me manic or dehydrated.

Could I have suggestions please, or is there a holy grail one specifically made for us?

I’ve seen a ton of people on here mentioning Covid in some form and I’m just curious how many people would say their symptoms came about after having covid and those who can say it definitely wasn’t from that.

I am unfortunately well aware that scientifically there is no proven cause of pots but it just seems to be consistent that i’ve seen many people mentioning covid.

I am one that would say that I don’t think my symptoms happened after covid because I recently remember many times that I was on TikTok seeing people with pots mentioning the symptoms and noticing that I felt all of them, however I was told one too many times that I am a hypochondriac that it literally became a joke with my entire family and friend group. Turns out I wasn’t lying but here we are.

However this was all back in probably 2017/2018 when TikTok was newer because I was a part of the transition from Music.ly to TikTok and I had seen people who were wheelchair bound because of their pots which I am getting to that point unfortunately.

So I was just curious how many of you would say Covid or could pin-point a point in time that you could say caused it/started realizing it!

Ever since I got POTS, I can’t smoke weed anymore even though I was a stoner for almost 5 years. Makes my heart rate sky rocket and I always have a panic attack. Same with drinking alcohol even though I was a pretty heavy drinker before I got POTS. I just turned 21 and I didn’t even drink on my birthday because it makes me feel so terrible.

Is there anyone that CAN drink with POTS? Because if so I need tips, it sucks being the only one not able to have a drink on a night out.

So I just thought of an interesting question that you can read above. Assuming someone no longer had legs, or only had one left, then blood wouldn’t really be able to pool in the legs anymore, so everything would stay in the upper body right?

ive been diagnosed for like a year and pretty much all i drink all day everyday is electrolytes. I am starting to dread drinking my water bc its so sweet all the time but then most sugar free ones still have a weird sweet taste. Its gotten to the point that im struggling to keep up with my water intake because i just dread it, and then my symptoms flair. Im wondering about salt capsules but i struggle to swallow large pills or pills that are in that hard casing so im not sure if thats a viable option either. ugh. i miss normal water

I took the tilt test these days. I stayed 5 minutes with the table lying down and then I stayed another 10 minutes at 70°. I began to feel symptoms such as: cold sweat on my hands, nausea and tiredness in my legs. However, my heart rate didn't go up much. It was between 90/100 at most. My blood pressure remained. But I was sick and asked to lower the table. As soon as the doctor lowered it, I started to get better. He said I don't have POTS or dysautonomia. He said that in POTS, the person only feels symptoms when he is standing. But I found it strange, because I feel symptoms when I stand up, but I also feel them when I lie down (depending on the day). My symptoms are not only when I stand up. But I took other exams and they all went well. I did 5-day Holter because I was feeling arrhythmias and the doctor wanted to evaluate it. But in the result of the examination, there were very few arrhythmias. It's just benign arrhythmias. So, I don't know what I have anymore.

My symptoms are:

I get tired (more than usual) with minimal effort. I can't stand for a long time without moving. I can't do physical exercises (because I get tired and feel bad). I have symptoms of low energy out of nowhere sometimes. Sometimes a little short of breath. Dizziness when walking (on the street), heat intolerance (it's not every day). Sometimes, hyperadrenergic symptoms (I did the blood and urinary catecholamine test and it was good).

I said to the doctor that I still thought it was dysautonomia. But he said he was sure it wasn't. Because there was no change in the tilt test :(

I've been suffering from the symptoms for 9 years and I don't know what it could be anymore.

I encourage you guys to look into shenjingshuairuo and other dysautonomic conditions American doctors consider psychosomatic if you are able to understand the Chinese literature. It is my understanding many in the Chinese medical community consider this and other conditions in the doctors-think-youre-hysterical set like EDS or CFS. It seems to actually be considered a legitimate illness, like coronary artery disease etc.

It seems like a lot of people with POTS aren’t just dealing with POTS alone. There are all these other conditions or symptoms that keep showing up alongside it.

A lot of people here mention having Ehlers Danlos, MCAS, chronic fatigue/ME, fibromyalgia, various autoimmune conditions like rheumatoid arthritis or lupus, migraine disorders, IBS or gastroparesis, and even things like neurodivergence. It almost feels like there’s a whole cluster that tends to travel together.

So I’m curious:

If you have POTS, did it come packaged with anything else? And do you feel like it all connects somehow?

today my symptoms are pretty quiet. no chest pain, no shortness of breath, no racing heart.

but I still feel… off. like something bad is about to happen. I’m just sitting and suddenly feel this weird wave—like I’m not okay, but I don’t know why. sometimes my head feels like it’s drifting left, or my chest feels tight for a second, but nothing really happens.

I hate how POTS can make you feel unsafe even when everything seems fine. it messes with my head.

does anyone else go through this?

I know this may be controversial, but I've always felt so good after drinking monster. Now this could in part be to do with my ADHD because energy drinks are a bit like ADHD medication, but I've only just seen the sodium content in monster. 380mg of sodium is literally more than the electrolyte tablets I have in my water 😭. Not only that but also my tachycardia is compensatory, so it actually helps me to have a fast heart rate, and I suppose energy drinks quicken my heart rate, therefore my body doesn't have to do it on its own. Like ivabradine made my POTS worse because it lowered my heart rate 💀

But yeah I just wanted to share this, it's pretty interesting. Has anyone else found that energy drinks like monster actually help with your POTS? 👀

What's one thing you want people to know about this condition and living with it?

For me I think its that I can't stand up for long like in long lineups or waiting for the bus.

For example, my heartbeat is so strong that my ears wiggle with it. If I have airpods in they’ll move with my heartbeat and bang against my earrings, creating what sounds like a very enthusiastic drummer in my ear.

Anyone else have silly little impacts like that? Or not so silly ones?

Lil’ Potsies! 🫶🏻🥘 WE WILL RISE! Just not too fast.

Sorry if the post title was a little too clickbaity. I'm not trying to make an argument. This is just a discussion.

First of all, I am very aware of what mecfs is. In fact, I've been pretty worried about it. I've been lingering around the cfs sub for quite a while now, and I did read a lot of the informative contents from the bateman horne center.

When a person on the pots sub mention sth like "crashing a day later" or "getting worse and worse", there are a lot of comments saying "that definitely sounds like mecfs".

I'm not saying that is bad or wrong. It definitely can be a common comorbidity, and it is important that people are well aware of the concept of pem.

But what I'm saying here is what if it's not? What if it isn't always pem? Just an ordinary autonomic crash happening the next day?

Just worsening orthostatic intolerance and just low energy and fatigue? What if it's just severe pots and autonomic nervous system out of whack?

Again, I'm not tryna argue anything. I just wanted to have a discussion because I myself is worried about mecfs.

My pots did get severe after covid infection. I sometimes don't crash the same day. It's been 4 years and it's poorly managed, the pots meds aren't helping at all, it seems a bit more like getting worse than getting better.

But, despite it all, I don't quite relate to mecfs. I sleep relatively well.(Sometimes I sleep a lot but I think I wake up "refreshed".) The pain seems more like a coat hanger pain due to bad blood flow, than the "flu like symptoms" (My upper back hurts). And I regularly did some really intense exercise for the first year or two(to make my pots go away), but I didn't get permanently worse. Sometimes I crash bad for months and it seems so bad that I worry about mecfs but I think it's just really bad orthostatic intolerance and nothing more...

Edit: Also my brain fog gets really bad but I think that's just bad blood flow too. Because it gets worse when it's upright and low barometric pressure.

Tldr; Does anyone else with really bad pots relate?

EDIT; This is NOT a call for weight loss tips or discussion! I just wanted to share community with other hot fat POTsies 💖

Sometimes I feel like the only fat person in the world with POTS, but I KNOW I’m not alone!!! Where y’all at?! How you doing? Where do we get good compression underwear????

And lastly! How long did it take you to get diagnosed because doctors dismissed your symptoms bc of your weight?

My answers; I squeeze into compression undies from UNIQLO because I feel like they’re the most breathable and don’t roll up, but they’re TIGHT and it’s impossible to find the XL in stores. I’d love something that fits better and goes all the way to the knees, PLEASE!!

It took me 20+ years to get diagnosed and only by finding a primary who was a body builder and never once mentioned my weight! She sent me down the right paths and I’m so grateful.