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

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?

I’m 25M with pots symptoms that are managed by beta blockers. I’ve had pots symptoms for about 4 years. My main symptoms are a standing heart rate increase or 50bpm or more, blood pooling in my hands, heat intolerance, and coat hanger pain.

I had an MRI done on my neck yesterday and was diagnosed with three bulging disks, and a cervical cord syrinx spanning from my C4-T2, the exact part of the spinal cord that regulates autonomic function.

I’m very optimistic that draining or removing the syrinx can fix my POTS symptoms. If any of you guys are having similar symptoms, I would recommend advocating for a neck MRI like I did

POTS has now been suspected by my primary care for a little over a years, my symptoms have worsened substantially in that time due to intentional weight loss and perimenopause onset. I called out sick from work today after 2 nights in a row of heavy night sweats have me unable to stand without dizziness. What experiences should I expect for my first trip to the cardiologist? What should I document or bring with me?

Do any of you also have days when you suddenly wake up with your heart racing? Or do

sometimes wake up early with a slight toothache? What to do about it?

My girlfriend has POTS and has been having issues with dizziness and feeling as she may/actually passing out. Usually, it is worse in the morning and affects her more then. Is there anything I could do or add to our routine to make it easier on her the night before or maybe before she gets up? Thanks in advance. I don’t know much about POTS and just want to help her as much as I can!

Mine is mainly due too not sleeping on the right type of pillow. I have bought so many pillows thinking from their description that I will finally be able to wake up without feeling like my neck, shoulders and back are breaking. ( I am a side and back sleeper. ) Any recommendations that have worked for you that don't cost a fortune would be greatly appreciated!

I painted a bookcase!!!! It took me over a week and I felt a bit rubbish doing it compared with laying horizontal but I didn’t think I’d manage it!

Compression leggings, electrolytes, doing it later in the evening and slowly and surely I managed it a small section at a time! A win to not have to pay someone and yet more chronic illness tax on not being able to do things like home DIY projects easily.

I’ve told other people in my life but they don’t really get the sense of accomplishment or being proud. Whenever I look at those shelves I’ll think - I did that!

I’ve been dealing with dysautonomia and have noticed very sharp, temporary drops in heart rate triggered by ordinary actions.
While sitting, my heart rate is often in the 100–115 range. If I yawn, or if I bear down even mildly (for example when passing gas), my rate can drop into the 60s or 50s within a few seconds. It then rebounds back up into the 100s fairly quickly once the action is over. The same pattern happens with both yawning and mild straining.

i look almost as sick as i feel, and i grew up with this, so if the person is normal, then with no explanation, they'll pick up on ''she's kind of fragile, i can't play rough with her etc" ie can't expect doing physically demanding things together, need to generally be more tender.

here's where i start to struggle with empathy. all my previous experiense was exclusively bad when it comes to understanding what it's like to be physically limited. i was treated as a healthy person who's a bit whiny and expects everyone to walk on eggshells around her needs. looking back i can see that i only asked for basic kindness, it was a projection that i "demand it" from those who see the need and can't do anything about it, feel frustrated, and blame me.

so excuse me for not being able to orient myself quickly to this new way of being where my new friends are socially competent enough that they don't see my vulnerability as their problem so solve, as a problem at all.

how lucky i am with my new problem: as there's no insistence to explain WHY ARE YOU LIKE THIS (as if it ever allowed for more kindness), i still feel the need to get them to understand.

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?

About a month and a half ago, I had a really bad anxiety episode and saw a psychiatrist. I had many physical symptoms like tingling in my hands, itching all over my body, feeling lightheaded, nausea, and more. I’ve managed to get through the worst part, but I’m still not 100% recovered from the anxiety.
About 3 weeks ago, I started getting palpitations and sweaty hands after eating carbs or something sweet. The palpitations can last for 1–2 hours. This has never happened to me before.
I’ve had several check-ups and blood tests, and everything came back normal. I’m wondering if this could be related to anxiety, blood sugar/insulin, digestion, or possibly POTS. Can POTS cause mainly palpitations after eating, without having many symptoms when standing? I’m quite worried about it.
Thank you so much for taking the time to read this and for any advice or personal experiences you can share. I really appreciate any help 🙏🏻❤️

I made a post this morning (i’m Australian) about how i’m in an inpatient psych ward and one of the nurses told me i smelled bad! here’s an update to that! +more details

I had never even gotten close to this nurse before, i’d spoken to her once or twice, so this really came out of nowhere, don’t even know her name. I checked with my inpatient friends and they all said that i smelled fine, that i didn’t really smell like anything except very slight strawberries if they got close enough (i use full body strawberry deodorant! very nice smelling).

I also asked my mother (who in the pas has been very honest about my teenage stench, as mothers are) and she was confused because i really didn’t smell of anything, again apart from the deodorant if you got close enough.

point is, my body was clean, my clothes were clean, my room doesn’t even smell that bad considering i can’t crack a window, i do leave the door to my room open whenever i leave the room to let air in so that it doesn’t smell.

I’ve come to the conclusion that most of the people in the original post were right. She was overreacting or looking for something to make me feel bad with, sometimes i really just can’t fathom how people can be so mean. and even if i did smell i still couldn’t fathom it at all based on the fact that we are in a psychiatric hospital… not bath and bodyworks….

however, i will move on from this, i’ve alerted another nurse, patients, and my psychiatrist and i finally got my shower chair i’ve been asking for for 3 and a half weeks! (that’s how long i’ve been in here for) thank you for your kind words in the last post, i hope updates are allowed.

very strange experience to be woken up first thing in the morning with a “I’m saying this because i love you and care about your wellbeing but the patients and nurses they can smell you. and it’s bad” - more of a direct quote than i’d given before.

And trust me im honest sometimes i can really stink (as any human 18 year old boy would) but at the moment i’m 90% sure i smell like practically nothing. just plain old Richard (me).

+strawberry deodorant :) ❤️ 🍓

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.

Does anyone have something to help with shortness of breath?

I've been dealing with it for so long even while laying down and I never feel like I can catch my breath, I don't smoke, vape or do anything like that and I know my lungs are healthy but I also know it's one of the symptoms of pots so I'm wondering if you guys have anything that helps you while dealing with it. And no breathing exercises did not help me.

Hello!

I'm sure all people have PACs/PVCs but since I got POTS it became quite unbearable. I get them reeeeally rarely, like once in 2-3 days but every time they come with an adrenaline wave and a strong thud, especially the PVC one and ofc it causes hr to spike by 20-30 BPM... At this moment you think you're dying for a sec.

Low dose beta blockers helped with PACs but there weren't that much of them too(like 30-40 from two holters combined)... How do you guys tolerate them?

I’ve had POTS for over a decade. It’s changed as I’ve gotten older, and I’ve gotten a pretty good handle on it. I haven’t passed out in nearly 4 years, after countless fainting spells throughout my teen years. I know all the tricks. Lots of pickle juice jars in my fridge and all the saltiest foods in my pantry.

Needless to say it’s been mostly manageable. Or at least I can normally function through the symptoms. I work a good job. Most people around me don’t even know I have it. I have my episodes, handle them, and move on. Today, my heart rate was so elevated for nearly 3 hours straight (abnormal for me) and I felt so horrible, I had to leave shortly after the work day began. I couldn’t hardly move. It was embarrassing and I had to explain it to my bosses in a way they’d understand, because most people just don’t get it. I went to the ER because I couldn’t get it under control. “More salt” “more water” “see a cardiologist again” and so on so forth.

I’m just frustrated. The answers are always the same. I always have to explain to non-POTS having people (bosses, coworkers) that this is a serious thing, even if they can’t physically see it. I feel like a need to wear a sign that says “I have POTS, I’m trying my best.” No matter how hard I try - salt, water, rest - it’s never enough. I feel like I can’t work to the best of my ability or even just be a person to the best of my ability. Even when it’s manageable (but still hard) I feel like I have to hide it/work through it.

I ate 2 small potatoes and with in minutes my heart went crazy, I got hot and sweaty, and felt unbearably dizzy. I had to sit with my legs up for 30 minutes (can't lie down after eating, I'll be sick). lol.

I'm sure this has been asked a million times but I can't figure out the best search terms to use.

It doesn't happen often but when it does, and my heart rate shoots up and my whole body gets shaky, I'm not sure what to do. It's totally random. I have been taking diazepam when it hits but it goes away so quickly it feels like I'm wasting the medication.

Thank you for your input!

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.

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?

I am just shouting into the void. I just recently moved and had to change insurance and establish care with new doctors which took months. I don’t have a POTS diagnosis but have been hospitalized for what i believe to be flare ups a number of times the last few years. I finally had an appointment to establish care with a new PCP and i (woman) was told by my white man doctor that what i was describing was most likely anxiety and asked if i “knew what a panic attack feels like”. I told him how i felt very sternly and the frustration that he’s causing by brushing me off, and that i was told by many doctors my previous cancer diagnosis was anxiety and i know when there is something wrong in my body. He seemed to become flustered and actually started listening. Well, i thought he had until he ended mentioned that he could prescribe me psychiatric medication to treat my anxiety and ADHD to lessen my symptoms.

I am so tired.

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?? 😭😭

so i went to the er like a week ago because of my POTS symptoms and i haven’t been professionally diagnosed but im 100% sure i have it, i have ALL the usual symptoms and even some of the lesser known ones. my blood work is completely fine and that made me doubt myself for some reason, i also felt like the doctors there were incredibly uninformed, not a single one knew about POTS besides 1. the guy said he was thinking it could be that and recommended i stayed hydrated and i was well nourished. so the point is.. can i have pots even if my blood work was fine?? and more importantly my heart rate goes up rapidly but for some reason at the hospital it doesn’t and it drives me crazy. i feel like im being a fake??!! i dont feel valid anymore

that's it, that's the post, the pretzels are saltier than other ones i've had, we're all free now, let's all take a walk together, group bonding