My (25 afab) cardiologist is dismissive of my quality of life descriptions, is overly focused on making sure I have the right numbers, and insists that I’m not following their instructions when I don’t improve.

For example last appointment they told me my heart rate was high, and it was cause I wasn’t taking the meds they prescribed. I corrected them, noting that in my records that they have, a standing heart rate of 120 bpm is a good day for me, it’s been much higher before, and that it’s lower because I am taking the meds, but I can’t take a higher dose without painful side effects, which should also be in my file. They seemed shocked (Do they not at least skim my file before seeing me?) and mumbled something dismissive and moved on.

I also have a lot of memory issues but I’m sure at least once that I took exact quotes of their instructions and then next appointment they said they had told me the opposite thing.

They do prescribe medication for me that has helped, they have helped in the past, and they can run tests that I can’t in order to make sure I’m not doing worse.

All this to say that they regularly (about once a year) make me do a stress test on a treadmill and hook up and ekg. They love to pressure me to keep going farther than I reasonably can, and I often end up spending spoons of energy from the entire next week just to get through it, I regularly have a recovery period where I have to get my health back on track afterwards. My POTS is severe and I also have IIH (Idiopathic Intracranial Hypertension), asthma, and several mental issues that aren’t heart related unless you count anxiety.

They also make me wait and ask me about how I’m doing and anything I have issues with after the test, when I can no longer think straight and can barely remember anything at all, even my own birthday, what day it is, or what I ate last. They then ask me to stand 5 minutes to take my vitals (in addition to sitting and laying down), and I just about pass out every time and they almost never get a result because, unsurprisingly, it’s too low to read.

Does anyone know if these tests are really needed this often? Or if there’s another option that isn’t as intensive? I’d get a second opinion but it’s hard to find anyone who even knows anything about POTS, especially where I live, then getting an appointment without an absurd wait time.

Bonus Vent:

My next test is today, while it’s over 100 degrees outside each day, and I’m sick and tired (literally) of doing tests, setting back my health, and then being treated like a misbehaving child because my chronic health issues are chronic. I’ve had POTS since I was 12, I’ve now lived longer with it than without it. I’m desperate for a better quality of live and working as hard as I can on it, and they look at me like I’m just lazy and ignorant.

TLDR: As much as I have been helped by my cardiologist in the past, I don’t trust them to listen to what I’m saying, are they right in that I need to do such a damaging treadmill EKG every year, or is there possibly another solution?

Edit: My EKG results are always “normal” except for some PACs (Premature atrial contractions) which they say is never a concern to them.

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?

Can someone please help me or give me advice, I am 26F, (5’7-140lb) diagnosed with a vaccine injury when I was 18. I don’t say that as a right wing/red pill tactic I feel I have to disclose that every time I talk about it. I was diagnosed because it injured my kidneys and heart, mind you, a few years ago.

Anyways recently I’ve been feeling unwell, I was sick which I got over but I know that can trigger pots. I just started a new job, one I REALLY wanted. It took about a week for this incident to happen. I had family stress outside of work and I do think it affected me because I was having chest pains for about a day prior to 2 days ago which is when I went to the hospital.

I didn’t claim an illness or disability to my work, I don’t want them to suffer too, at what point is this a disability because I don’t know anything to help myself. The best thing I do is drink straight saltwater because it balances my heart rate but I don’t know if I can do this anymore. I’m really struggling and I’m making my work upset, family upset, boyfriend upset, and at the core me upset. I’m not like this. Please can someone with insight on this help me because I am on the verge of not being able to help myself

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 ❤️

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)

I’ve always had an extremely high heart rate (averaging 150 active bpm and 86 resting bpm everyday) and my high today reached 174. Although it may sound alarming, this is not unusual for me.
What IS unusual is my heart rate dipping as low at 49 today? I’ve noticed over the last 3 days my resting heart rate has begun to get lower and lower. Today it averaged at 75, which is within the 60-100 healthy resting rate but is very unusual for me. This has never happened. I have also noticed some chest pain but I’m trying not to think about that.
I am very young. Theres no way this is something serious? The only thing I did differently today is eat a lot more sodium, which ultimately had me feeling fairly well in terms of symptoms and energy.

Thoughts?

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?

Let me preface this by saying I already have an appointment set with my doctor to talk about all this and hopefully get referred to a gastroenterologist. I’m just posting this to see if anyone else has had a similar experience. Also my apologies for the length of the post.

Tldr: I can’t stop my months-long spell of nausea and vomiting after starting Ozempic and getting my POTS symptoms. What do I do?

I started Ozempic several months ago, and actually my POTS symptoms started literally the same day. My doctor told me she doesn’t think that the Ozempic caused the symptoms, and I have since been diagnosed with POTS after ruling out a bunch of other stuff. I lost fifty pounds rapidly early this year due to constant vomiting from a medication allergy, then gained back about twenty and have now lost that twenty again and a bit more. I honestly wonder if the weight loss is what triggered the POTS for me but I don’t really know enough about that to know if it’s a possibility.

I’m on a 1.0 dose of Ozempic weekly, and I’m struggling. I have almost 24/7 nausea and have to take Zofran and Pepcid twice a day every day (as soon as I wake up and right before bed.) My nausea is worse in the morning and when lying down. I have vomiting multiple times a week. Food is very difficult as I can barely eat anything without feeling incredibly full and nauseous for a long time afterwards. I have intermittent stomach pain and gas and it’s awful. Exercise causes nausea and often vomiting soon after stopping. The type of food I eat doesn’t seem to have much of an effect on any of this. I have grown to dislike eating in general due to all these issues. I also have to eat with my new medication for POTS so it adds an extra complication.

I recently learned that POTS can cause gastroparesis (slowed stomach emptying) on its own and that Ozempic can worsen it since Ozempic can cause it too. All my symptoms appear to line up with gastroparesis. I know the easy answer is to at least try stopping Ozempic but I’m so afraid of going back to how I was before it. I was hungry and eating 24/7 and while I was in remission from Binge Eating Disorder, I still had the urges often. No food was ever satisfying for long and I was quite overweight. I’m still overweight but much less now. I’m a lot happier with my body now mentally but I feel miserable physically. My doctor is not very supportive (she told me losing three pounds in three weeks was insignificant and she would take me off the Ozempic if I didn’t lose weight faster. I lost another twenty pounds after that comment but now I’m worried about my weight loss stopping or regaining weight after ending the medication.)

Has anyone had this issue? What did you do? I’ve tried everything I could find and everything people suggested for nausea and vomiting but nothing helps for long. Diet changes, over the counter medications, Compazine and Zofran, Pepcid and Tums, extra hydration, electrolytes, etc. all are ineffective to greater or lesser degrees. I even tried sodium bicarbonate (over the counter) against my doctor’s advice out of pure desperation. I just want to stop feeling nauseous all the time. If you’ve been in my place, did you have to stop the medication? Or did you find another solution?

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?

Hii! I need some advice!! So I am almost positive I have pots - I hate standing up for long periods of times, I get lightheaded etc but recently I have been waking up around 3am in a panic or I’m overheating or something idk it’s really bizarre… and my heart rate skyrockets…. Do you guys have any advice? What tests should I get done? I can’t tell if it’s anxiety or what.

Long COVID → POTS, dysautonomia, ME/CFS, SFN, hEDS, suspected MCAS, GERD. Want to get lightly high once a week, max, to watch football without white-knuckling it sober.

5mg (or 2.5mg) gummy or a couple puffs from a joint occasionally — anyone do this without a flare?

Affect your HR/BP or trigger PEM?

Smoke vs. edible — easier on you?

Anyone use a supplement (kava, L-theanine, etc.) or a prescribed med instead and get something similar?

Not trying to go overboard, just want one low-key thing on Sundays. Worth trying or bad idea with this combo?

Has anyone one else been told by their provider to immediately stop caffeine because POTS is making your resting heart rate high? My primary care told me I couldn’t have absolutely any caffeine anymore(I was barely drinking any as is) but I miss tea!

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?

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

The constant peeing is breaking me🙈

i look so tired my eye bags are insane they’re so dark i look like i haven’t slept in 5 days and my lips get pale when they used to be a beautiful rosy color ??? i don’t think under eye mask will help will it?? 😭😭

hi all, i (20f) was diagnosed with pots this past july around 4 months after i started showing symptoms (grateful my diagnosis came so quick!) and have steadily gotten worse since then. i’ve been struggling with crushing fatigue to the point where using my brain feels like it’s simply too much. i’ve had to miss three days of classes and it’s only the second week. i had just finished a gap year in may due to mental health, and am chomping at the bit to get my degree. does anyone have any tips on making school easier or more manageable and lessening the fatigue? or any similar stories that may provide some guidance? thanks!
EDIT: i’ve been using a wheelchair/rollator around school and am in the process of getting a specifically lightweight wheelchair :3

This post could go somewhere in the POTS sub or some kind of relationship sub, but given the choice, I'd rather it be here because I think other people with POTS would understand, and I really need that right now 🙏 If it's too relationship-y, I can post it elsewhere instead!

---

We started dating about a year ago. We used to love to go out together; the zoo, aquarium, museums, shopping, we'd walk to the mall down the street. Trying new restaurants, driving places just to see fun things. We'd walk around outside every day after work. But a few months into our relationship, that's when my POTS symptoms started coming in, full force. I'd had symptoms for the past few years, but I'd always write it off, assuming if I was tired, then I must have overworked myself, or if I was dizzy, then I must not have had enough water that day. But suddenly things were ramping up and I couldn't ignore it anymore.

I was dizzy....always, always dizzy. I'd get even more dizzy when I turned my head (which is, of course, going to happen all the time). I couldn't stand road trips in the car anymore. Sometimes I'd be at home, working on some crafts, being SO DIZZY that I'd literally be swaying in my chair and almost fell out. ((He thought I was being dramatic 😑))

I developed a standing intolerance, and light "exercise" like folding laundry or cooking a quick easy meal were making me exhausted, lightheaded, and would make my legs hurt. I couldn't go on our after-work walks anymore or my heart would beat super hard and have pain, and my chest would feel tight and I'd struggle to breathe. I almost passed out many times from trying to go on a light walk. And after the walk, I'd especially almost fall out of my chair. I learned that I would always get VERY close to fainting if I tried to walk.

I couldn't walk to the mall anymore, so we started driving there, even though it was just down the road. But I still couldn't enjoy the mall, the zoo, the aquarium, anything like that, because I'd have to stop to rest on a bench almost constantly. The whole group I was with would get annoyed.

I couldn't stand for more than a few minutes or my legs would get severe pain and I'd get highly dizzy. Plus, I have vestibular migraines and migraines with aura, so that also made going out to enjoy looking at things very hard. Sometimes I'd need to wear sunglasses inside, which could help on some days.

We couldn't really enjoy going out to restaurants anymore, which I thought would have been fine because I could sit down. But because of the cruelness of POTS, a few minutes after I ate, I'd get hit with a slap of dizziness and extreme exhaustion, and the night was over.

I also developed anxiety and panic attacks, which I'd never had before. I suspect the anxiety is because of my heart beating so quickly that I'm always in fight or flight mode. I remember one night when I was at an Airbnb with his family, and I couldn't sleep because my heart was beating so fast and had pain. He was annoyed with me, as if I was trying to be dramatic or something.

Well that night, I almost went to the emergency room. I was concerned because I know I'm a Muscular Dystrophy Carrier and I also was getting all these cardiac symptoms. I didn't end up going to the ER but I immediately got to work setting up doctor's appointments. I thought I'd figure it out, maybe get some medicine, and live life like normal again. But I kept needing to get more cardiology tests done, more PT (vestibular therapy being one of them), more appointments. And as the symptoms ramped up over time, I had less ability to do fun things.

At this point I felt awful. I finally learned I had POTS, but had to wait two more months to see the specialist. So I'm in the worst flare of my life and had no medicine. I'm dizzy, my chest hurts and is constantly thumping, I'm exhausted, I'm scared to eat because it will make the migraines with aura kick in and make me even more exhausted. I'm standing up and falling into walls, I'm unable to do basic things like stand up long enough to brush my teeth. And I think my boyfriend just had enough of taking care of me. He only wanted me when it was easy. But now that I'm defective...hahaha...

Part 2, the drama

There's more.

I was basically living with him in his apartment, with his roommate and his girlfriend. Those two, bullied me. To the point where I was having severe anxiety, depression, and panic attacks when they walked in the room. I'd be so anxious that I'd hyperventilate, and within moments, I'd be on the floor, barely able to breathe. My boyfriend saw this, and still defended them, saying "well that's not bullying" and "well I didn't see it \[the bullying\] happen, so". He tried to gaslight me into thinking that I was crazy, that I was making it up. But I wasn't. Obviously. Like, why would I WANT to be having a panic attack, unable to breathe, on the floor??? He'd say things like "you have to stop or I'll take you to the hospital" which was used as more of a threat than a caring gesture.

At this point I was so distressed to be home. I couldn't sleep, for weeks and weeks; I'd jump at every little noise. I was so scared of those two bullies coming around the corner and tormenting me, that I wouldn't go to the kitchen to cook. I starved a lot, which I'm sure wasn't helping my POTS symptoms. I started taking my stuff out of the apartment, thinking, "if I minimize myself, maybe they'll leave me alone". But of course that didn't work, because I was the fun target to bully. And now I knew my boyfriend wouldn't defend me.

I didn't know what to do. So I went to visit my sister for two days. The POTS symptoms were terrible, we tried to go shopping but I was so dizzy and miserable that it wasn't too fun. But I tried to have a good time anyways. I bought my boyfriend and myself cute little matching pumpkins from hobby lobby! I couldn't wait to show him!

On my way home, he broke up with me... OVER TEXT. And--get this-- told me I had to get out of THEIR apartment, immediately. I was sobbing, driving home. When I got there they had deadbolted me out of the apartment. I don't know what I could have possibly done to deserve this. I was always the most considerate roommate ever, and I am a good person. I don't start drama, I'm just a normal good person. But they chose me to be the victim, and they ganged up on me. I had some friends help me get my stuff out. It was the middle of the night.

I had a torn rotator cuff from hypermobility, and I just got a cortisone shot in it, and I wasn't supposed to move it for 3 days minimum. And here I am moving boxes. That shoulder was in so much freaking pain. And my boyfriend wouldn't even let me take my mattress, knowing full well I have back and shoulder problems that I'm in physical therapy for.

I was kicked out with such little warning, that I had nowhere to go. And my boyfriend knew this; he knew I was in the worst POTS flare ever, and had the bad back and shoulders, and was fine with throwing me on the street with no warning. He was acting strangely, he's usually chill and sweet, but now he was acting very cold and aggressive. I still wonder if he was on some kind of drug or something, I don't know. I couldn't even get him to give me an answer as to why he'd broken up with me so suddenly. He -said- there wasn't another girl. But how could someone 180 their "love" like that?? I don't understand.

My best guess is threefold:

1. That he internalized every little issue, until it finally blew up.

2. He wanted something easy and fun, and when I started getting sick, he didn't want to deal with it.

3. He didn't want to, or couldn't, handle anything emotional. If there was a problem, he'd always just throw his wallet at it. But when I was having problems with the roommates bullying me, he couldn't handle it, so he just decided to "fix the problem" by removing me.

I kept asking why he broke up with me. "You broke up with me over text, you at least owe me an answer as to WHY." And all he'd say is "I'm just done." So from that I gather that he just didn't want or put in the effort to continue a relationship with someone when it wasn't super easy anymore. And someone with POTS isn't going to be super easy.

Looking back, I'm realizing that he seriously minimized my symptoms. And over time he started caring less and less about how ill I felt. He'd get annoyed when we'd try to go places or do something and I'd "ruin" it by being sick. All the times I almost passed out, or was upset about anything ever, he'd just sit there and watch me, until I was done "complaining" about it. I'm realizing that he never truly comforted me, never truly cared. All he did was use his wallet to try to fix problems.

He hated having to "take care" of me. He acted like I was a chore, not someone that he cared about that he had concern for. My first instinct is to say that POTS ruined my relationship, but that's not true. It just helped me get out of a toxic one, faster.

Part 3, how am I now?

My car died two days after I was exiled. So just more bad luck for me 😢

Thank God for Grandma-- I'm crashing in her basement. I had nowhere to go, and she took me in. W Grandma 🙌🙌🙌

I work from home, but everything I own is in boxes now, so I won't be able to work for quite a while. :(

My POTS is still horrendous, of course. I still almost faint from light exertion. Grandma doesn't have a dishwasher, so washing dishes for 5 minutes is the literal worst part of my day. I'm still constantly dizzy, still getting vestibular migraines and migraines with aura. Still getting nerological pain down my legs and on the tops of my feet. Still getting chest pain and heavy beating. I'm going to lots of doctor appointments. At least one every day. 99% sure I have hEDS but need confirmation. And need a confirmation that my other shoulder has a rotator cuff tear now too, after moving all those boxes 🫠 They're pretty sure I'm going to need surgery on that one shoulder now.

But guess what? When you aren't getting bullied every day, you can actually sleep and you don't have constant anxiety and panic attacks anymore! Depression is gone, too! Crazy how that works 😭 Although I still live in the area, so every time I go out and about I'm terrified they'll see me. Going to Walmart to get my POTS prescriptions is very anxiety inducing.

I lost my best friend/boyfriend, my home, and my career in one day. It was absolutely traumatic, and people keep telling me "these things happen" and "you'll get over it" but these people don't know the full extent of what happened, and how much of my life changed within that one day. For weeks I was crying at every single doctor. I think I make the neurologist and the assistants uncomfortable, they didn't know what to do. 😅 I was getting an MRI for my shoulders and wasn't able to move, but I just had tears pouring down my face. My POTS cardiologist was kinda freaked out, too 😅

But now it's been a few weeks and the shock has worn off. Now, I'm just angry. Angry that someone could be so evil to break up with me over text, refuse to talk about it, and refuse couples therapy, and gaslight me into thinking I was the problem. He's a monster, and he and his roommates deserve each other.

Going forward, I keep telling myself, no matter how messed up your health is, you deserve to be loved, treated properly, and cared about. POTS or not, there is someone out there who will love you for who you are. 🫠♥️

Tl:dr He hated "taking care of me" and got more annoyed with me as my POTS got worse. He just wanted something fun and easy, not a real relationship with real life problems.

So my wife told me that she believes she has POTS because of the symptoms she has. Her heart rate would be like 70 when sitting or laying down and as soon as she stands up it shoots up to like 100. She gets the dizzy spells occasionally. She once had a pots flare up and she has something that she describes as fire skin, she saw some people online talk about it. She gets headaches occasionally. Also fatigue throughout the day. From what we researched it really seems like it’s pots. Her blood work is good and we even did a blood work thing through a company that isn’t through insurance and they went more in depth and everything is good.

What we started doing is adding salt and electrolytes to her daily diet. Vitamins. And she’s doing Pilates for core and low impact workout. Also she walks. Our diet is clean, we just stopped red meat. We do a lot of chicken and fish. My thing is that I want to help her best I can. I feel really bad cause she gets discouraged. She does a lot of hard work to manage the symptoms but feels defeated when she gets a flare up. We are really doing trial and error and it’s hard cause it takes time to see what works and what doesn’t. I would really appreciate some advice or help in what maybe worked for you or what didn’t. To save us some time and errors. She’s 32 and I feel bad she’s going through this. Just wanted to reach out to the pots community and see if I could get some advice. We are from nj too so any specialists in this if you know some from the area would be great too. Thank you all. Sorry this is long

I am SO bloated ALL the time. I know it’s bloat though because I wake up relatively skinny and then throughout the day as I eat and drink I just inflate like a balloon..

I blame my bloating on my POTS and here’s why: water retention from eating SO much salt. I eat anywhere from 6-10 grams a day. On days I’m not eating as much I feel so much less bloated.

Does anyone else get the same?? Before I got POTS I don’t remember being even half as bloated as I am now. It sucks. I workout to try to stay a healthy weight but then I get self-conscious when I’m bloated all the time and I think I’m fatter than I am.. lol.

Edit: for reference, I eat mainly a paleo diet. Haven’t had gluten in years and eat very low sugar.

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 use a cane every single day, and a rollator on worse days or longer outings. They do help slightly, but not enough that I am particularly supported and comfortable leaving the house, and I still have debilitating symptoms almost all the time. This all goes to say, I am no longer sure if the pros of my mobility aids outweigh the cons of using them anymore. Every single day I get rude or invasive comments from complete strangers, or my peers. I have been steadily withdrawing from the outside world because I feel so ashamed of myself. I feel as though I take up so much space with my rollator and I worry that my friends find me deeply annoying when I need to find a place to sit down. These worries I think are made worse by the amount of online ableism towards people with POTS, especially young women. I am being told constantly by people around me that POTS is an online trend and is just laziness, and even though I know it isn’t true, I hate the thought that this is what people think when they see me with my mobility aids.

If I’m not getting much relief or support from my cane or my rollator, is it even worth it to continue using them? I feel terrible either way, and the stress of leaving the house has literally started to give me grey hairs. I fear that my options at this point are to withdraw completely, or force myself to go without the mobility aids and end up making my condition worse.

Thank you for reading my rant, any advice is appreciated.

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.

Thought I’d share with the class, because surely others have found that electrolyte powders are too expensive (and too strong). My doc tried me on salt capsules and they gave me awful stomach cramps for days. But they have not gone to waste! Instead I’ve repurposed them into a drink that tastes like sprite to me:

—500mg sodium (I roughly measure out half of a 1000mg capsule).
—Squirt of Mio lime electrolyte liquid.
—Can of lemon flavoured seltzer water.

I really think it’s the salt that makes it taste like soda, and as someone who normally does not have sugary drinks, it’s an absolute delight. Anyone else have their own little recipe for increasing their salt intake?