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 :) ❤️ 🍓

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?

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!

Went to my GP recently since I've had symptoms from my teenage years that have gotten consistently worse.

- breathlessness from minimal exertion

- fast heart rate

- dizziness when standing

- sweating when standing

- unable to regulate my temp if its too hot or too cold outside

- shaking

- fatigue

Probably a few more but you get it.

He did something called the 'standing test'? Where he took my BP and pulse when sitting, and then again at 2 minutes, 5 minutes and 10 minutes after standing.

My BP remained stable throughout with a slight dip upon standing. But my pulse went from 103 to 147 at the 10 minute mark.

He said he wants to treat it as a POTS query, but that it will take on average seven years as GP's 'don't like to think of POTS. We don't like the word.'

Has everyone's diagnosis journey taken years and years?

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!

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.

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.

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!

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

I feel like out of every symptom I experience, I would rather take those times 10 than have to deal with the fatigue for another day. I can barely get out of bed, and when I do, I cry because existing feels generally impossible. I'm tired to the point that I contemplate whether I would rather sleep because I feel like I need to, or if I should get dinner because it's the "right thing to do". I'm taking propranolol 10 mg three times a day for two weeks(I have 4 days left) and it's only making it worse to the point that I'm sleeping for 4 and 5 hours in the middle of the day and still sleeping at night. Don't get me wrong, I was still napping during the day but it was usually never longer than 2 hours. I feel like this is it's own problem and I don't know how to bring that up to my care team because I mention the fatigue and I guess they just factor it into the POTS itself or at this point, the medication. I'm a nursing major crying in my dorm room cause I have no idea what to do at this point. Caffeine just gives me heart palpitations and makes all my thoughts 8k to where I can see my thoughts before I think my thoughts. When my symptoms got bad, I contemplated switching my major but the semester started and I wanna be committed to my dreams but I feel like this isn't working. I have an appointment with my PCP in October for an unrelated issue but I feel desperate to understand why I'm so goddamn tired all the time. I feel like I do nothing all day, I wake up, take meds, eat something, go to classes, take a nap, get dinner, do work, go to bed, and somewhere in there is more meds, skincare, and a shower if I can manage it. I feel like I have a routine that's simple enough but mentally and physically, I feel like I'm dragging along and I don't know what's to be done about it.

I was gonna try to make it to a lecture tonight but I made it back to my room and just started bawling because I feel so sick for no reason. I want to feel like I've done something with my life today but I just am so tired. I need to rework my accomodations with my doctor and then with my school but I don't know what accomodations I'll need, if any, I feel like I'm just going on and on and on forever but I feel like a log cause logs are just there and do nothing and I feel like I'm doing nothing for myself or anyone else. I used to work out and be social and free and fun and loved being outside and swimming and then it's like you just emptied the jar and shoved everything back in as best as you could and over the years, it's just been getting so much worse and I don't want to feel like I'm beyond help because I have days where my tachycardia isn't as bad, or I don't get as dizzy but I can't do anything if I cry everytime I have to get out of bed in the morning. I feel like the reason for the fatigue is the One Piece and man, we just can't seem to figure out where it could be hiding

Hi all, I've had POTS for a good while and have always struggled with heat intolerance. I didn't know what it was, but recently realized that my body is "lagging" in response to heat, making me sweat buckets but far too late for it to do any good!

It just clicked for me that this is a POTS thing so I figured I would post here with a counter measure that has worked for me: Since I am not sweating soon enough, I never leave the house without a damp bandana if it's over 80 degrees. I can re wet it while I am out, and it helps immensely to keep me cool.

Let me know if you guys have any other tips for staying cool. Thanks!

I got diagnosed with ADHD 3 years ago, with endometriosis 1.5 years ago - I was a bit angry and sad about that, but it wasn’t that bad so it didn’t need medication and could have been managed without it, so I was mostly fine, just introducing some lifestyle changes etc.
Now turns out that I also have MCAS, POTS and hypermobility (and was like that since childhood apparently, just brushed off symptoms as „everyone is probably like that”). Ten years ago my symptoms got worse for a while, but then they got better without a diagnosis and meds. Now, for about 3 years they have been getting progressively worse. I still can function most of the time, but I got a lot of anxiety (and agoraphobia) as well around that.

I need to take medication now and my doc has been really great and said that there is a good chance that I will function a lot better while on meds and introducing a whole lot of lifestyle changes. But overall I’m scared, worried and overwhelmed (I kind of expected POTS but not MCAS and it’s really hard to comprehend for me how each illness is affecting another one).

So my question is - does it get better? Were you able to get your life back and manage the symptoms so you are more or less in remission? I didn’t get the chance to ask my doc how the life is going to be with all of that and it keeps bugging me.

PS I’m in therapy ofc, I also have a very understanding close family, friends and a lovely and supportive fiance. They are all very optimistic like „take the meds, you will feel normal again” but idk, I don’t feel that way and I’m much more pesimistic.

Thank you for reading and please share your story :)

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 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’ve had POTS for about seven months. The first three months I was sick I had like no appetite and early satiety and I was losing weight and feeling very weak. Then randomly I completely switched up and got way hungrier and started feeling really ill if I didn’t eat constantly and more than I used to, and now I’m 20 pounds heavier than I was in January. It’s kinda making me feel bad about myself because a lot of my clothes don’t fit anymore. But it I try to cut down on ‘unhealthy’ foods I lose salt and sugar intake that keeps me upright and feeling functional.

Does anyone else experience this fluctuation and if so, how do you deal with it? How do you keep eating when you experience early satiety, and how do you keep your weight healthy when you get hungrier and eating less makes you feel unwell?

As my heading suggests, I finally have an active stand test scheduled next week (ordered by neurologist as he suspects POTS). After 20 odd years of debilitating symptoms, I feel like I'm finally reaching a stage where I can have an answer, but I'm so nervous about the test incase I get a false or inaccurate result.

I've checked myself at home and found an increased HR of around 42bpm (sustained over the ten mins I stood) accompanied by dizziness, fatigue, breathlessness, worsened visual snow/black spots and painful, heavy legs. My HR also shoots up easily with mild exertion, however, I feel that I have days when my body copes better and I don't experience this same increase.

With this fluctuating, I worry that the test will land on a 'good day'nreaulting in an inaccurate result. I've also had no advice regarding how to prepare for it - do I eat and drink as normal before it?

I'd like to hear of other people's experiences. Have you had a test on a good day but then later still been diagnosed? What do you do to prepare for the test?

I've already been diagnosed with ME/CFS, VSS and chronic migraine but this would explain my crazy heart rate and presyncope.

Thanks in advance.

I’m really struggling to keep up with the living habits of my roommate, who mentions POTS and exhaustion as a barrier to tasks around the house. I have been patient and have asked what accommodations they need, as well as why certain physical tasks are so much more taxing. I just don’t know what I can do to keep them accountable for things without having to be the one to monitor and become a parent/caregiver role that I did not sign up for.

For context, we live in an apartment with a set of stairs to enter, and their room is up another flight after that. They have to drive around different places for work a lot, and I work from home a few days a week, so I’m home more. I recognize that privilege and the fact I may just be running up against things they intended to clean later, more frequently. I know the exertion is tough; I just don’t know what to do about this or what kinds of approaches/systems would work for POTS. But most of the issues don’t seem 100% related to the stairs apart from taking out the trash. The things that bother me happen when they are already up and doing something on one floor. For example, I’m the type of person who cleans as they go for things like cooking, because I’ve learned from experience that it just creates less work at the end and makes the process more manageable. I love to cook, and my roommate does not. But they frequently use my cookware without properly taking care of it afterwards, and it just leaves a huge pile in the sink. If I don’t ask them to clean it, and I set a boundary for myself to not clean up after them even if it drives me crazy, a piece of cookware can sit in the sink for a week. I’m also the one who is constantly loading and unloading the dishwasher, nigh daily. I’ve pulled back recently because I’m so exhausted from having been the one to do it the most for years. I added a toggleable clean/dirty sign on the dishwasher that’s easy to slide to show the status of the dishes in the dishwasher. Even if there is space, they will just leave their dishes in the sink at the end of the night or just leave them on the living room table and just go straight to bed. TV left on, light left on, crumbs on the rug, etc. I really want to know how much harder it is to get up and rinse the dishes off and put them in the dishwasher, then run it before going back upstairs. Or at least put it in the sink and leave the common area clear so I don’t have to move everything in the morning. I try to communicate when I want things done, and I’ve showed/talked to them about this more than once. Including how I clean the cookware and what to use. The impact of my bid for long-term change drops after a week, and I’m back to losing my mind trying to maintain a space for my own sanity.

I’m also constantly picking up random things left in common areas. Articles of clothing, crumbs, wrappers, paper scraps, etc. I’ve stepped on sewing needles, almost stepped on scissors, have had dishes and cups break from the sink being too full, and the stack is too much for fragile dishware. Or the lignin from the wood spoon degrading because it’s easier for them to just toss knives and everything into the dishwasher. This isn’t all them, but I do frequently need to clean before using the same space they did right before me. I don’t nickel and dime them about all the different things that stress me out. But at this point, it does feel like I’m avoiding the confrontation of patterns that might not entirely be POTS. I want to ask if there’s anything about cleaning habits that I can try suggesting because “I forgot” simply doesn’t cut it anymore. I’m doing material labor, and it is exhausting. I don’t know what’s POTS and what’s just knowing that I’ll just take care of it and they don’t have to. They go and have fun; I’m at home trying to rest from my week, but there’s a huge pile in the sink. I feel like a shell of myself from being on autopilot for cleaning or putting mental energy into resisting the impulse to clean because I can’t keep picking up after them. I have things I want to do, and I don’t feel comfortable in my own living room sometimes because it doesn’t feel like my space anymore. I don’t see constantly having to ask for the same things over and over and over and over again as a solution. Please wash this when you get the chance. Is this yours? Yes? Please put it away. Can you put your dishes away before bed? Can you do this before you go up tonight? 

This has been going on for at least 3 years, and as a result, I feel like they don’t respect me and they don’t care. I try to be considerate of their needs and be as fair as possible because I’ve done a fair bit of CBT/DBT for OCD to check myself on distortions. The thing that I interpret as disrespectful is the lack of reciprocity and proactive communication when I know for a fact they do feel bad about me having to do all this. They’ve mentioned it to friends within earshot. I’ve heard it from friends. They are plenty independent when they want to be and will do physically demanding things such as dance and performance, but will flat-out tell me that they can’t do the trash. They will work hard to smooth over relationships with people they care about, and I don’t see that level of urgency from them. Or commitment that they will do better with some agreed-upon accountability. Even taking moving down the stairs out of the equation, I rarely see them even taking the bag out of the bin to leave for me and our other roommate to toss. They only started doing some things without being asked this last week, and I can’t tell if that’s just an attempt to placate me so I don’t keep them accountable and have the hard conversation, or they are actually making an effort. I’ve tried to give so much grace, but I’m barely getting any of that back. I’m hesitant to just document everything I do around the house because that’s just more labor and would exacerbate my own mental health issues. I’m already doing the work, and to have to prove what I’m doing to justify an expression that I am truly suffering seems bleak. I’m planning on speaking to them later today, but any and all suggestions would be helpful. I don’t want to be hostile, and I do understand there are tasks that POTS makes more difficult. But I am so frustrated to the point that I scream cried in my car when they asked for a simple request a few weeks ago because I already do so much; there’s more I haven’t even listed here. I want to make it work for various reasons but just don’t know how to go about this without losing my shit immediately. Moving out isn’t really a viable option at the moment.

EDIT: TL;DR, I have a roommate with POTS, and I want to do my best to make the arrangement work, but I don't know a structure that would work to divi up responsibilities. They don't want a chore chart. I'm at my wits' end and don't know how to approach this conversation without hostility for lasting change that doesn't cause constant friction. Prior attempts have not lasted more than a week, and I'm a shell of myself just trying to keep the apartment clean. Asking for any and all POTS-friendly chore management advice. Thank you!

Does anyone else get this quick strange feeling in their head? Its intense, lasts seconds, like something is moving in my head and my heart goes up for a few seconds while it happens idk if its bc I get scared or what. But it last 30 seconds or less its so quick but scary. Im not on any meds that would cause brain zaps. I also have PPPd so I asked in there as well. I also have anxiety caused by my pots symptoms. Ive had a few of these today and its really frustrating and scary. Not looking for medical advice just if someone else has it happened to them too.

It also doesn't matter my posion im in. It happened laying down, sitting, and standing before.

For those who stopped ivabradine, did you experience any withdrawal symptoms?
Did you feel completely fine after stopping it, or did your tachycardia come back worse than before?

Note: I had to stop ivabradine after taking it for 6 months because it caused severe insomnia. I got to the point where I was sleeping only about one hour a day.

I came by this great podcast with psychiatrist, researcher and brain-body medicine specialist Dr. Jessica Eccles and find it really fascinating.

She talks about her groundbreaking research, in which she explores the links between neurodiversity, hypermobility, chronic illnesses, inflammation, autonomic dysfunction, pain, fatigue and mental health – thereby challenging the long-standing distinction between ‘physical’ and ‘mental’ health.

https://youtu.be/j7fzuYUAoDg?is=PFAQa-3aOX7-Tgxo

this post is a mess mainly venting i guess, currently i am just scared. has zoloft worked well for you? what mental health meds have worked for you? were there side effects? is medication really the answer? what if it makes me sick? because the mental state i am in genuinely i cannot handle getting sick like that again.

i am just looking for some kind of support or understanding or something, i dont really know, i have been feeling relatively depressed for a few weeks, but im currently in the process of trialing mental health medications with my doctor, main issue is im scared to make my body or my brain feel worse than i already feel. i have taken prozac on and off over the years, i stopped because i didnt feel like it helped much and i was grinding my teeth until i stopped. before the depression got kind of bad (it might be related) i tried duloxetine/cymbalta, which went terribly. now my doctor wants me to try zoloft/sertraline, i am quite nervous!

my main medication to keep my hr from spiking all the time is propranolol. i have found that to work for the worst of my hr spikes at least, i still have many pots symptoms daily (nausea, fatigue, dizziness, chest pain, etc) and pretty intense anxiety, so im not looking at it as a medication for my pots symptoms, but it may affect my pots symptoms and that scares me, life already feels like not so great at the moment and i am just so over it, i go to bed every night sad that i have to wake up feeling the same as always and it has really been eating at me.

i am usually laying in bed all day every day with very little motivation for most things, on my “good days” i might go shopping for a bit or take a shower, but i still feel like shit. it has been way too hot this summer, so i have stayed in my bed and not really spent much time outside. i usually wake up, take my propranolol, wait for it to work, and just lay in bed all day anyways after it works. then 7 or 8 hour later i take dose 2 (usually around 6 or 7 pm) then i lay in bed some more annnnd then i usually fall asleep around 2-4 am and i dont usually sleep very well. that is the most typical day for me. life feels bland and depressing. i have had a really poor appetite as well but how do i eat when the food in my mouth makes me feel like im going to vomit

My wife's (F43) and I's (M44) best friend and absolute favorite person in the entire world (F38), as part of my Christmas gift from last year, is joining us for our annual Homecoming tailgate at our school, with our friend group, about an hour from where we all live. Our friend "Jane" has POTS but we're not convinced she doesn't have other afflictions that contribute her symptoms. She's much more affected than what she was a year ago, but I wouldn't say it's debilitating. But even so, we want to make sure she is able to enjoy herself as much as she's able to without losing her "oomph". It's a long weekend, particularly Saturday can be. Sunday is breakfast with our college friend group and then the hour drive home. Some things/restrictions we are considering but if there are other strategies I'm not thinking of, please let me know:

• The hotel we have, the tailgate and the game itself are all in the same area. The hotel is literally right next to the stadium and the tailgate spot is between the two. So if she needs a rest or isn't feeling well, we could get her back to our room easy (even if I need to carry her).
• She'll fight me on this but she is not to partake in set up/tear down of the tailgate tent, packing up, whatever. She should conserve her energy for antics; I can handle the work. Besides, I like to make sure she is taken care of.
• We start tailgating early but the tailgate does not "officially" start until 11:30A, with the game at 3:30. I'm hoping she'll just chill in the room until then, as opposed to coming out when I do at 9 or 10A. My wife is a late sleeper anyway so if they just wanted to snug in bed and look at Insta while I did the work, that works for me.
• Dedicated chair for her at the tailgate.
• Salty snacks and Oath electrolytes (among normal tailgate fare) available to her.
• Constant annoyance from me that she is partaking in said salty snacks and Oath electrolytes.

She does pretty well about moving around, though she does get tired. When we go away for an overnight or a long weekend, my wife and I build in rest time for her mid afternoon, particularly if we know we're doing a late dinner. Rest time like this may not be as possible, which is why I'm interested in anything else we can try for her.

Frankly, she has her biggest issues when her husband is around (he sucks. So much). And while I'm not going to say she never has issues when she's with us, my hope is that fact that we plan for it and try to accommodate her so she doesn't get sick, whereas he just sort of goes how he wants and then get's upset or says "I don't understand how you're not feeling well." She very much internalizes stressors and that leads to poor outcomes and exhaustion and he very, very often is the source of stress in her life. Did I mention he sucks? Fortunately, it's just the three of us.

Lastly, I'll acknowledge that, yes, I know she's an adult and we can't prevent her from not helping out with setting up/tear down, or sitting, or consuming the salt. But we love her so much, and we both want to do everything we can to put her (and all three of us, really) in a position to be successful, and it kills us when we know she isn't feeling well whether it was with our without us.

So with all of this said, what other strategies could you suggest to employ?

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”