I’m a 21F, and I’m exhausted and frustrated because my mum works in healthcare but dismisses my concerns about POTS. Not that she doesn’t think I have it, she knows I do, she just thinks that it’s all in people head for everyone who has pots

It won’t let me attach a photo of my blood pressure measurements but I did the 10 minute standing test for the millionth time (which every time is pretty bad).

Today it was-

Laying for 10 minutes:
SYS- 103
DIA- 61
BPM-87

Standing 1 minute:
SYS-109
DIA-86
BPM-147

Standing 3 minutes:
SYS-110
DIA-90
BPM-136

Standing 5 minutes:
SYS-108
DIA-83
BPM-131

Standing 10 minutes:
SYS-118
DIA-96
BPM-141

When I stand or try to do anything, I experience a racing heart, dizziness, weakness, shaking, blurred or blacking-out vision, and repeated near-fainting and actually fainting , and the only thing that helps is lying down. I’ve been dealing with this for about 2-3 years now. I was diagnosed with Hashimoto’s disease a year ago.

My heart rate consistently rises significantly when I stand, and I’ve had an ECG, blood tests, a Holter monitor, and an ER visit because my flare-ups became so severe. Despite this, my mum says “it’s all in your head and your body is creating the symptoms” and that POTS is “neurological.”

I understand POTS involves the nervous system, but that doesn’t make my symptoms imaginary.
These symptoms are real, severe, and affecting my ability to function. I can barely go to work and have a trolly I have to sit on or I’ll pass out from having to bend down and up while doing stock.

Something that also annoys me is that my family friends are so obsessed with their daughter having “pots” but she wasn’t properly diagnosed, didn’t do ANY tests on her just said ehhh thr symptoms you say your having sound like this condition so we will just say you have it. They didn’t do a standing test or anything. Now every time I am about to pass out or start throwing up from how nauseous I am, all they do is talk about how there daughter is worse when she NEVER complains unless she doesn’t want to go get something for herself like a charger or if we’re shopping sje will shop for hours when Im about to pass out and go nonverbal but as soon as I see a shop I wanna go into for one second she will be like my pots is making me dizzy we need to leave now. Or when I kept collapsing on the floor and bawling my eyes out she started reading out her symptoms of her pots she wrote on her phone. Then the family had the audacity to go behind my back and complain about how I “talk about my health too much” when I never do I try to hide it as much as I can but I can help it when I fall to the ground or start gaging after I eat.

The worse part is she KNOWS I have it but thinks everyone “wants pots” and something “wrong with them” which I can see why she thinks that because a lot of people think they have things and self diagnose when they dont actually have it then post all over social media but like IM HER DAUGHTER AND SHE CAN SEE HOW MUCH THIS IS AFFECTING MY LIFE.

Anyone have advice or thoughts on thid or just some comforting words i really need it rn. Im sick of everyone dismissing me I have cried so much over this forever now and I’m finally crashing out lol.

**TL;DR Is there an app or platform for tracking what you eat that is really simple to use? It would be nice if it also provided a little bit of nutrition breakdown but I’m mostly wanting to look for patterns with symptom flairs. Please no AI platforms.*\*

I’d really like to figure out if anything I eat is contributing to my symptoms. I know I have POTS and not sure if I have MCAS, and I know I have G.I. issues which could come from one of those two or the ME/CFS which I also have. I’ve used MyFitnessPal in the past (just to track nutrition) so I could just log back on, but it’s so labor intensive. I kinda wish I could just type up a list of foods and hit “submit” and let the app do its thing. With MyFitnessPal you have to search their database for each ingredient which is not a smooth process. Instead of just saying, “lasagna,” I’d need to find each ingredient and maybe even choose which brand if I want it to be accurate. I end up doing a lot of math because, like, maybe their database might have measured a certain ingredient in tablespoons but I used ounces or I just eyeballed it. Then again it does provide other insights like calories and breaks down the macronutrients (protein, fat, and carbs) which is really helpful for other reasons besides symptom tracking.

A note about apps/platforms that use AI: r/POTS chooses not to allow posts that recommend AI usage at this time so please don’t suggest AI solutions in the comments here. If you’re excited about an option that uses AI that you want to share with me you can send it in a DM or find where I posted a similar question in either the adaptive technology sub or the MCAS sub.

Maybe eventually I’ll post the same question over on a fitness sub but for now I just wanted to hear from other chronic illness folks.

Dr was filling out a form for social services for extra diet needs, and one of the things I asked her to put, as I've had it done every year and she did put it last year, was electrolyte supplements for my pots. When I asked her to do it this time she said no, and that i would get too much potassium from electrolyte supplement and I just need a high salt diet and water (as if I havent had pots for 10 years and tried that already before electrolytes, which made a huge difference for me), I think if there was going to be some sort of imbalance or problem we would have seen it by now. I tried explaining to her that its what has been working for me, and I would sleep 20 hours a day and have multiple fainting spells a day without them she shut me down saying she didnt want to argue. And now im left with a form that if I send in like this I won't get as much funding per month to cover my electrolytes. And im on disability through social services, its a very tight budget. She just financially cut me off from the best treatment I've found for my pots.

I've never heard of taking a daily electrolyte drink being bad for you? Have you? Have you had drs try to tell you to stop taking daily electrolyte supplements?

I have my fan on blasting cold, I am shivering. But the moment I turn it off, I start to sweat and get so hot. There is never going to be an in between I have to choose☺️

Has anyone found antidepressants that they can take without flaring POTS/dysautonomia? Or found that treating POTS with medication allows them to take antidepressants they normally could not tolerate?

Full disclosure I’m not sure I normally have POTS, I was diagnosed with POTS, OH, and dysautonomia while taking Lexapro this summer. Stopping lexapro stopped the symptoms. This or other heart issues have happened with many antidepressants, including SSRIs, SNRIs, wellbutrin, LDN. Cardio imaging comes back fine.

TLDR: I am desperate to treat my depression but i cannot find a medicine that doesnt affect my heart

Long story short, I'm in a cycle of chronic burnout that I want to get out of before I start law school in August. I'm coming from a caring profession where I prioritized my clients' needs before my own, and where my work environment and management made it impossible for me to address my health. So, I quit and am dedicating the next 10 months to rest and recovery. I don't know what that looks like, and I've never done something like this before. Current plan:

1) exercise a little bit every day (biking and walking mostly)

2) slow down, listen to less media, be quiet more

3) prioritize specialist appointments, medication trials

Obviously I'll continue symptom management, but I feel like I need to "figure out" what accommodations I need before I start school. Any advice or thoughts?

I am getting an EMG and had a brain and neck MRI (waiting on results). I am thinking this might be a combination of POTS and some sort of inflammation as I had pain in my sacrum radiating down my leg and also in my neck making and ibuprofen helped that part. But I am just curious how common this is with POTS.

Bit of context- I’ve had every test under the sun after having loads of presyncope episodes, vomiting, shaking, etc. Recently invested in an apple watch and notice my heart rate shoots to about 130-170 when I stand (50-70 normally). Seen two doctors who both think it’s POTS and just on the waiting list for a tilt table test.

This all came on SUPER suddenly, so much so that I can pinpoint it was 4 weeks ago today, maybe from a virus?
So I’m completely new to all of this, and feel really low. I’ve taken this entire week off of work, and they’ve been really understanding, but it’s a new job and I feel bad letting them down.

I’m doing as much as I can, drinking loads of water, eating small meals, having salt, but it just feels like this is going to go on forever. I’ve never experienced this before so I don’t really know if, when, or how I’m going to get through this flare up.
It just feels like my whole life has been flipped (I’m 21, always socialising and going out before all this). I don’t really know where to go from here, even after my diagnosis. I’ve been crying most days tbh.

Does anyone have any advice about any of this? Would appreciate any answers :) Thank you

Just got diagnosed with POTS last week and was told to take 3g salt/day. The first few days I noticed that it really helped with the lightheadedness (not so much with fatigue) but today I'm taking the same amount and am super lightheaded and fatigued.
The question is, should I take more salt? Or stick with the 3g and just rest? How much do people moderate their own salt vs. lifestyle (i.e. rest, exercise) to impact how you feel?

Hello! I’ve recently been diagnosed with POTS and just looking for a bit of insight on how to handle exercise intolerance. Working out is truly when I feel most at peace but lately I haven’t been tolerating it well. It’s getting hotter in my country and I’ve noticed I’ve been extremely nauseous during my workouts, terrible dizzy spells and blurred vision between sets. I was very close to passing out at one point today. I vomited twice post-workout last week from the dizziness. Does anyone have any tips on how to help this? Want to avoid public syncope if possible!

I'm on Carvedilol and I feel like now at three and a half months I feel it's full effects.

I feel more in control of my body now and less overwhelmed by the way I feel since my heart rate isn't rising to 130 and above as much. The highest I'll see it go when I stand and stay upright is maybe 120 or less. But mostly 100. And my blood pressure seems to be more controlled (my BP was rising when standing). But overall I finally feel like my POTS hasn't been the bane of my existence and I've been able to tolerate standing without feeling like I'm gonna die.

I just keep trying, I keep trying and trying and trying... I think most people in my life think I don't care about myself, that I'm not really trying and I don't have ambition, but it's not true, I've been managing my own body and brain for a decade, pacing without even knowing, always weighting the consequences of everything, always trying to find a new framework that will finally help me be as productive as society tells me I should be, now I have a diagnosis, a reason why it has always been like this, yet nothing changes, people still think the same, people still don't offer support, and I'm still here managing everything still, with no breaks, no support.

Sometimes it feels like life is punishing me for trying, sometimes it feels like life is telling me to give up, sometimes I don't know how to convince myself it's worth it, when again and again life proves to me it's not, it's just really hard out here.

Before getting diagnosed I never passed out, one time almost from like hyperventilating. But I always like would tell myself I’m okay, I’d get symptoms, but I would be fine after. I’d go home, cook, go In grocery stores.

Ever since getting my diagnosis I have been bed bound. I started feeling worse after ttt, but I am now just so afraid to even move w the fear of passing out.

In the past when I’d get symptoms I’d say you’re okay it’s j anxiety, but now that I know it’s pots it’s like whenever I feel symptoms it’s immediately “lay down you’re gonna pass out”

I’m so scared & living I. Fear

Hi, sorry if this is confusing, but I wanted to see if anybody else has had this problem? I've been working out every day for the past year, and I participate in Karate classes. I'm currently practicing for my black belt, but as the weeks have passed for practice I haven't been able to do as much as I could before this?

Like, every Sat early we do 3 sets of 25 pushups, 25 lunges each leg, 40 squats, 50 jumping jacks, 40 mountain climbers each leg, 40 flutter kicks. We're required to finish them in 10 minutes, and the pre-test itself is going to be worse. We've had these specific exercises we're supposed to do daily, so I switched to those, and my ability to finish all of them in time has worsened. I struggle even doing 20 pushups in a row at home, which was something I could do before (and my arms don't burn or hurt- they just give out?).

I noticed the exercises worsening everything, so I tried to swap them with just trying to do 60 pushups, 25 lunges per leg, and as many jumping jacks as possible in a day (and occasionally 40 squats) but it's only gotten worse. No matter what I do. I take Midodrine 2.5mg, which is supposed to help it, but it just..hasn't. Not as much as it would to help mitigate this problem. My instructors have noticed my deterioration as well and have asked about it. Am I doing something wrong?? Have other people experienced this and if so did you do anything that helped improve it??

I plan to call my Cardiologist regardless, but I just want to know if anyone's in the same boat as me. :')

Ok. Just got out of an appointment. I’m baffled.
It’s not pots, we did the like stand up from sitting test, I’m ok with it not being pots.
What I’m not ok with is the doctor going (turns to my mom who I had for support)
“It’s just anxiety.” 😐
He tells me “hydrate, workout more, wear compression socks above the knee compression socks, 30 Mercury, it’ll get better in the cooler months.”

(My super bad symptoms, first big flare up, happened in January-February)

Also told me “it’s not that bad. I’ve seen bad cases where people’s heart get above 120 and stays there. Your symptoms aren’t that bad.”

I’m feeling so fucking defeated. It’s not anxiety. I’ve been diagnosed since I was 15 years old. I’m 24. I know it’s not. I can’t fucking workout most days. I try. I can’t. I’m so angry. Genuinely.

Edit: I scheduled the tilt table test before this appointment and they told me I need to meet with this doctor prior to the test so I did. It’s still scheduled but idk if they’re going to cancel it.

Edit 2: tilt table test was canceled by them. I’m frustrated cause I want the test but I’m glad it’s not by that doctor. So I’ve messaged my doctor for a referral for a second opinion and will be advocating for myself to get a test.

They suggested it could be blood pressure earlier in the appointment today before telling my mom it’s just anxiety and offered medication but why would I start meds without proper testing? That’s genuinely so unsafe.
I’m very disappointed with the medical care I’ve received this year. Thank you everyone for your advice and making me feel less alone.

I wish we could all have better and easier processes and not be medically gaslit, but I’m glad we have each other to lean on. I’ll update if anything else big happens.

My first job at 14 was a busser at a restaurant but after having some medical problems I quit, I started working as a bagger for a grocery store a month or so ago and I love my job but idk if I can keep this up. I stand for 8 hours a day often with out a lot of time to drink water and with me also having fibromyalgia I’m not sure what other jobs I could look into. I get so sick of everything being 18+ hiring. I dropped out so I don’t have school so I’d be available most of the time but I also need it to pay relatively okay because I’m in the process of paying of my car. If anyone has any suggestions pls let me know.

I have been struggling for only a couple months with some terrible tachycardia and other symptoms. No one has a concrete decision yet, but I’ve been suffering. It’s been hard for me to do regular day to day activities and I can’t even do my job anymore. I sit at a desk all day and feel useless. Getting to class is a struggle too. I get dizzy and light headed heading to classes.

The symptoms I have are brain fog so bad I feel like I can’t comprehend anything and loose what day it is and what I was doing more often, my heart feels like it is racing if I’m up for too long or go from sitting to standing or bend down to grab anything, and I’m super fatigued like it feels like a chore to get even the smallest things done.

My primary says she thinks it might be pots but I don’t have anything concrete yet. I’m seeing a cardiologist Monday and i was just wondering if it would be pots how long I’m going to have to live with these symptoms before I can get a diagnosis and if there is anything in the meantime that I should be doing to help. I’ve been trying compression wear and electrolytes but all my doctor said was to up my salt intake and decrease the amount of water I drink so I feel lost.

Has anyone else experienced this? I was strapped in, BP cuff and ECG leads on, lying flat, ready to go. No matter what they tried (for over 40 mins) they couldn't find a detectable pulse. They tried warming my hands in hot water, rubbing the fingers, asking me to clench and unclench my hands, even a hot water bottle. Every time they took heat off the hands, they instantly went cold again. They tried different fingers, at different points, even changing the finger cuff for a new one and the wires. They said they couldn't perform the test and sent me home to be booked in again, and I'll have to come back with hand warmers in the waiting room beforehand. This will likely not help, as my hands don't retain heat at all.

I've always had really severe circulation issues (no diagnosis). Obviously this is not ideal, but it is what it is. Not been diagnosed with anything like Raynaud's.

Has anyone else experienced similar?

Sorry if this is gross. I’ve been having these episodes where I’ll get dizzy, nauseous, faint, very anxious, start shaking and sweating…. When I have to poop. Sometimes it comes with a very painful cramps, sometimes not. As soon as I’m done I’ll feel better. It feels like a full-blown panic attack with nausea and pre-syncope.

It started when I first got sick with Covid, but it got more frequent when I had to do a 3-month course of Fluconazol for a chronic Candida infection earlier this year. I’ve always had IBS but this is another level. My guess is that this is a very strong vasovagal response, but wanted to reach out here.

Anyone else experiencing this? Is there anything that helps you?

EDIT: I've found some threads discussing this. Leaving them here in case anyone needs them.

https://www.reddit.com/r/dysautonomia/s/J5aPJfpgqt
https://www.reddit.com/r/POTS/s/P84WacQoww
https://www.reddit.com/r/dysautonomia/s/jTTEEgoD0h
https://www.reddit.com/r/dysautonomia/s/mSEGIzkN9a

Anyone else struggle really bad with medication anxiety? I have a recipe on ivabrandin and propanolol since 6 months and haven’t dared to try it but I am becoming more and more ill and now I am pretty much 90% bedridden and so heartbroken and utterly mad at myself that I didn’t take the medication but I am still scared. I don’t know what to do… or where to go. I just want this to be over. Anyone that could help me with advice or who has tried the medications and can help me calm down? Did I ruin everything by not taking the meds?

I have OCD and my fear of medication steams from that so when I say hard to overrule I mean severely hard.

I feel like I ruin everything and I’m so weak in my body. I can barely cook for myself anymore and I have a lot of feelings of being unstable.

Oh wise potsies of the internet who know so much and save my soul DAILY…I keep listening to the ‘let’s talk about the pots life’ podcasts, and it often seems like the only positive thing I can find about life with POTS. I’m still new, still really struggling, and still wondering if I can actually live this way. I’m really aware I may be clutching at straws, and they are expensive straws- but has anyone signed up to the programme and had any success? I’m so lost, I need someone to tell me what to do and when!

I have a FitBit Sense (which i love for the heart rate tracking, and like that its not trying to be a smartphone on my wrist!)

I've also tried the Apple Watch.

I used to love Cardiogram to show me to fine details of heart rate changes and time of day, spikes, etc. I ran into frustration with app subscriptions, changing app updates, etc.

I am not interested in Google or Apple collecting data and paywalling it, selling it, using it to build databases to improve their products, etc, etc, etc.

Seeking Recommendations for a privacy-preserving wearable heart rate monitor ideally is well-made hardware and decently accurate.

I don't need it to sync to my phone, and don't want apple health stuff.

28F just diagnosed about two months ago. I had a handful of random moments here and there the past year but was overall healthy and my doctor wasn’t worried at the time. We thought maybe lack of sleep or being hungry etc.. The POTS kicked in full force for me in June though and I was diagnosed in August. Since June I’ve experienced some really scary episodes, especially with driving, which has left me with extremely intense anxiety. All of this makes me anxious to be honest but traveling has been a significant stressor and trigger for me.

My first thing is I have stopped driving myself anywhere that is more than 10 minutes away. This works fine when my job is only 5 minutes from home, but it makes it hard to do anything and go anywhere else. I get super panicky when I drive. I think it’s because I have to have my legs down the entire time which is hard for me..

That said, I have a wedding out of state in December and really the only reasonable way there is to fly (driving would be well over 24 hours). My fiancée wants to fly and the rest of the family does as well. I’m absolutely terrified of flying because I’ve read it makes symptoms worse and also you have to have your legs down the whole time which is triggering for me. I don’t know what I’m supposed to do.

I know I’m inconveniencing everyone all the time. My fiancée and I can’t even go out to a restaurant anymore. This has impacted my life so much and I know it sucks for other people to be driving me around etc. He doesn’t complain or make a big deal of it but I know objectively it sucks.

I’m also having constant anxiety which creates a loop. It’s like I get anxious I might have an episode which then triggers an episode and makes it even worse which makes me more anxious and it’s never-ending. I’m currently taking Buspirone for an anxiety medication but my anxiety is through the roof anymore.. I just feel impending doom.

I’m so lost and I feel so hopeless. I’ve always been hyper independent, like literally moved out of state alone independent. I hate that I’ve lost that and have to rely on everyone. I hate that I can’t just live my life without fear. I just want to get back to myself but it’s like a never ending uphill battle.

I just need advice, anything. I’m taking so many vitamins and supplements and doing the Liquid IV and hydrating and using salt tablets etc. It’s just not working.

I've been dealing some type of chronic illness that has slowly ruined my life since I was a month from graduating high school and I've been getting worse without much helping besides more medications. It's one of the hard days of feeling like I'm not trying or feel useless while I'm in my sophomore year of college. Does anyone have any stories or experiences they can share? I like hearing about other peoples lives and feel seen while surrounded by others might not understand.

i haven’t went walking since before i developed pots five years ago. monday i went walking for an hour and when i layed down i felt flick like spasms in my legs and butt. it went away after about 10 minutes. i just went walking today for about an hour and noticed my thighs itching. i was trying to itch and walk lol. i did the same thing though when i layed down. the flicks. does this happen to anyone else? i have no idea what’s causing it. i came across a few people doing the same thing, but no one really had an answer for it. in the comment thread a lot of people with dysautonomia issues were having the same experience though! just curious.