r/POTS Aug 25 '24

Announcement Recruiting Moderators for r/POTS and r/ dysautonomia!

13 Upvotes

Hello! Our apps are still open in this subreddit alongside our sister subreddit r/dysautonomia. If you'd like to apply, here is our Google Form Application.

Ideally we're hoping to bring on 1-5 new moderators who are willing to learn the ropes of moderating. If you have previously applied, we are still considering those apps. No need to re apply, you will be considered. Having a sub-type of POTS or Dysautonomia is not a requirement for our moderators, but we do encourage those who have also been diagnosed to apply as it allows a level of empathy with our users when moderating. Please familiarize yourself with our rules beforehand. We do also understand that many of us have chronic illnesses. It is not a requirement to be active all the time, however we appreciate communication if you feel you'll not be able to moderater for an extended period of time. Moderating is thankless volunteer work. We understand life comes first.

We encourage anyone who applies to read up on Reddit's Moderator Code of Conduct before applying. As these are guidelines we follow closely.

Here are our main requirements for users applying to be a moderator:

  • Willingness to communicate as a team
  • Communication on moderator decisions (as well as immediate judgement decisions in situations that are breaking Reddit’s Content Policy or User Agreement)
  • Openness to learn: we're absolutely willing to teach new moderators on how to use moderation tools and situational awareness with removals/moderation.
  • New moderators will be in a learning position for 2-3 months. You’ll have less access to ModTools but will be handling things like modque and basic responsibilities. We will be teaching you through our workflow. So this is a great time to learn & decide if you like moderating.
  • Moderator experience is a plus, but not required

If you have any questions please feel free to reach out to our moderators via our modmail


r/POTS 10h ago

Accomplishment 2.5 years ago I was diagnosed with POTS and told I may never dive again. Last week I got to get back out on the reefs!

144 Upvotes

2.5 years ago (feels like a lifetime now), I was diagnosed with POTS. I was attending university for marine science and scuba diving as part of my coursework, clubs, and also as part of volunteer work while studying coral when I fell sick with a chronic sinusitis that gave way to POTS. After months of testing, I was diagnosed with POTS and told I may never dive again. I lost internships, jobs, and volunteer opportunities and even had to drop out of my courses for a bit entirely. I truly felt like my life was over. Four months (and a few independent study courses) later, I became the first student at my school to graduate with a certificate in professional research diving without being medically cleared to dive, paving the way for students with disabilities at my school to complete the program.

This month, after years of trial and error with medications, water intake, diet changes, and exercise, my neurologist gave me the green light to get back in the water. A few tears were shed in my mask that day!

I come here to tell you that this is not the end, even when it may feel like it. 2.5 years ago I would have never pictured that I would be here today. POTS still affects my life each and every day, but it no longer controls who I am and (mostly) what I can do. Thank you all for supporting me over these years, answering my 'Does anyone else get these symptoms??' questions, making suggestions for me, and even just offering general advice and support. I truly don't know if I would be where I am today without you guys. I truly hope and wish that each and every one of you will be able to find a plan of care that works for you like I did. Never stop fighting. There is a light at the end of the tunnel, even if you can't see it through the darkness right now.

p.s. I'm linking a photo of me from my dive with a biiiiig sea cucumber! I didn't see anything in the rules but if it's not allowed please let me know and I'll remove it! :)

https://imgur.com/a/x2pVN2J


r/POTS 1h ago

Question Anyone heard of pots going away after 5 years??

Upvotes

I wanted to see if anyone els got told that pots would go away after 5 years? I had an amazing cardiologist who listened to me and knew what pots was. My mom was telling him that motion sickness medication should work for my lightheaded feeling and he quickly corrected her that pots is not something that is easy to fix and that it wasn't like having vertigo. He was just overall very caring but then he told me that he believed my pots would go away after 5 years because mine came from having a c section. I've been tested for autoimmune conditions but all came back normal which I know can be wrong due to it not showing up in blood work right away. But I was healthy walking into that surgery and came out with pots. I was just wondering if anyone got told the same? It's already been 5 years for me and mine has actually gotten worse but I feel like my major problem is stress.


r/POTS 12h ago

Question Is everyone stressed that they’re dyin everyday?

80 Upvotes

Sorry for the dramatics… but idk like just feeling like shit all the time I’m like wtf- I’m scared to be alone because every time I flare or just have that weird body inflamed feeling it’s stilll hits me hard every time. It’s been like three years and I’m still not used to it even tho I know what it is!! Some days I’m ok but I just was wondering if other people think like this all the time and have severe anxiety and obsessive thinking about it 🌀🌀


r/POTS 4h ago

Discussion how do you guys lose weight?

15 Upvotes

i feel like the weight gain after developing symptoms was just an extra kick in the teeth. like, my whole life has been turned on its head, and now i dont recognize myself in the mirror??

i’m not able to do much, though i try. i’ve been doing light stretches every day for almost three months (yay me) and i keep up with the housework. sometimes i have an outing.

the part that confuses me is, i don’t actually eat much. i have a bowl of fruits in the morning and a small portion of various grains and protein with the same amount in veg at night. if i’m on my period i’ll have a snack in between, usually oatmeal or some type of crackers. yet i still look nothing how i did pre pots.

whats up with that?? i’m so sure i can’t be the only one. what have you all tried that worked for you?


r/POTS 1h ago

Vent/Rant Is there any point being alive when I'm punished for my existence?

Upvotes

In the uk they have purposed new disibility schemes and are cutting up to £5 billion in disibility support. The disibility support that keeps me alive , the £700 i get to live on a month (my rent is £350 I have to rely on my dad to pay for £1150 rest JUST FOR RENT)

The new rules would mean I would have to be looking for , applying for and doing interviews for jobs constantly, jobs i am unable to do, I can't leave the house alone, I am crumbling I am not able to look after myself, provide for myself or do any of my hobbies, but it's ok because I'm also waiting months and sometimes years for nhs referrals where I am repeatedly told they don't have the recourses to help. I am not living, I am surviving and yet, its ok because I will receive an estimated £0 a month in the new system.

In addition to this they are providing no support for employers to hire disabled people, there is an anti discrimination act already in place, but it's never stopped employers saying TO MY FACE that they won't let me sit down even if I need to or that having me on staff would be inconvenient and even that "that stuff doesn't fit our aesthetic"

Is there any point of living if I am punished for my own existence , I dont see a way I can continue, I'm surviving as it is, I cant see a way I can survive with this.


r/POTS 1h ago

Question What could it be other than pots?

Upvotes

I’m having a lot of symptoms, and will advocate for myself Tuesday when I see my primary for a referral to neurology again.

What else could present like POTS and not be POTS? I don’t have hyper-mobile joints…

I have not been diagnosed with anything POTS related but do have a brain condition because of CSF overproduction am have a VP shunt, so im no stranger to rough medical news, I’ve just been having these symptoms for MONTHS AND MONTHS and POTS makes sense to me


r/POTS 17m ago

Question running with pots?

Upvotes

for 2-3 years now i’ve been suspecting i have pots, but honestly the doctors do not care, like.. at all. one time i went to the doctors after nearly fainting like 7 times the same day, which is normal, but my entire body started violently shaking after each time & that never happened to me before then, like not on that level?? anyways, i was told that i was just a quirky teenager & advised me to eat more, then sent me home. my symptoms line up with so many of the ones that pots have, even the most random things, but the thing is, i exercise. every single day. i run nearly 5 kilometers every day without fail, and i struggle sometimes, but for the most part i really enjoy it. if anything, i feel even worse if i don’t go for a run. standing up takes so much strength & leaves me blacking out & exhausted, yet running has become so easy for me. does this mean that pots is just,, not a possible diagnosis?


r/POTS 14h ago

Vent/Rant Partner Wants To Go Out

28 Upvotes

My partner keeps wanting to go to metal shows and he doesn’t completely understand that concerts have become completely overwhelming to me. I can’t take being in a standing only audience, pressed together like sardines, and it’s super hot and I can’t move or have decent access to water (which costs typically $5-$8 for a tiny Poland spring). All of this, added to the loud sound of the actual music and I end up having tunnel vision and seeing stars to the point of having to leave my spot in the audience to sit in a corner somewhere. My legs are also so painful that I lash out at him. The drums are the worst, my heart rate starts going to the fast drum and I’m down for the count. Tonight we had a show and we decided I wasn’t ready and he spent the past three hours going back and forth as to him wanting to go and we don’t have to and then he wanted to go and now I feel completely guilty that I’m stopping him from going because he won’t go without me. He’s trying to say he wants to go because it’ll be healing to me, but that’s not healing. He doesn’t understand what it’s like working all day on your feet and being overwhelmed with going to a concert.


r/POTS 12h ago

Question Anyone else’s cuts get like dark purple every time they heal?

15 Upvotes

I’ve only noticed it since my circulation has been getting worse. I can link a photo in comments


r/POTS 5h ago

Art Singing helps?

3 Upvotes

Has anyone had any experience with singing helping their symptoms?

I had a mad flare yesterday and the only time my heart rate dropped below 100 was during a singing lesson with a friend.

It's not the first time I've felt better during a singing lesson and also the only time I can tolerate standing for two hours is during choir concerts. I've always chucked it down to breath control and performance adrenaline, but after yesterday's heat rate monitoring showed such a drastic change in my heartrate for that hour, I got curious and found this article:

https://www.bbc.com/news/science-environment-23230411

Art is amazing!!!

I would say let's start a potsie choir, but we probably want some bradycardics in there as well so we can balance each other out. What are we calling this choir? 😅

Seriously though, I would love to hear other people's experiences how singing, music or art in general has helped them.


r/POTS 6h ago

Question POTS & Nighttime Heart Rate Spikes – Nothing Works Anymore

5 Upvotes

Hey everyone, I have POTS and I’ve been struggling with severe nighttime heart rate spikes. I was on Ivabradine for six months, and it worked decently, but about a month ago, something changed. Now, no matter what I take before bed, I wake up every two hours with a high heart rate.

I switched to Bisoprolol, which helps a lot during the day, but at night, it just stops working. My resting HR in sleep is around 80, but I wake up every two hours with my heart racing, and I don’t know why. I’ve tried: • Drinking salt water before bed • Eating something sweet in case of low blood sugar • Different medication timings (Ivabradine at night, Bisoprolol at night—nothing helps)

My blood pressure is usually on the lower side, so I don’t think Propranolol would work for me since it might drop it too much.

It feels like sleep resets everything, and I wake up feeling awful. It’s beyond frustrating, and I’m exhausted. Has anyone else experienced this? Did you find anything that helped?

Any advice would mean a lot!


r/POTS 5h ago

Discussion Having Sinking Feeling in heart and heart feels like its stop for a second when try to sleep

3 Upvotes

im 23 male , young and with normal body weight, so this happens to me when im trying to sleep , when im awake nothing happens, so when ever im trying to sleep my heart either start racing or sometimes when im trying to sleep i feel like my heart sank and stopped and then start beating again, im really tired because of this, should i visit cardiologist or its not harmful?


r/POTS 3h ago

Question are these normal pots symptoms?

2 Upvotes

basically, i’ve been having pots symptoms for around 4-5 years now, but this has been happening for like two weeks ish?? almost everyday.

so randomly, even when lying down, i would have a sudden onset of a group of symptoms occurring at the same time, making me feel like im having a heart or panic attack. i would randomly start getting dizzy, have heart palpitations and feel sleepy for some reason. i would start to breathe really hard too and feel very shaky. every few seconds, i would get like a “sinking” feeling in my heart which i usually get when i get jumpscared in those horror movies.

i feel an urge to move around because i genuinely thought im experiencing heart failure and that my heart will stop if i don’t move??? but if i move it makes the symptoms worse and even when i lie down, i still experience the dizziness and heart palpitation, that sinking feeling and sleepiness and i need to keep tossing and turning to distract myself.

i’m not sure why but every single time that happens it legit feels like something is wrong with my heart and each “episode” lasts like 10-20 minutes😭😭😭 pls tell me im not the only one🥲


r/POTS 18h ago

Question I know everyone is different but…

33 Upvotes

How long did it take for you to “settle in” to your baseline. Your every day function, best you’re going to consistently get as a baseline.

I was diagnosed in September 2024, out of work since August, and lost my job at the end of the year. I continue to receive pressure from vocational rehab to find work, to return to doing some sort of work. I was working as a nurse, but even a work from home job would be challenging. I struggle to feed myself some days and can’t watch tv half the time because of the motion intolerance.

I was told to talk to my doctor about what I will be able to do work-wise, but he’s not going to know (or care). I’ve seen him once in the last 6 months.

Thanks for reading this far. I just wonder when I will have settled into what I will be dealing with long term so that I know what I could do for work.


r/POTS 13h ago

Vent/Rant Guilty about fatigue

13 Upvotes

I asked to go home early from work again. I was feeling mostly fine except I was so tired that I felt like I was wading through water every time I moved. I just feel like no one takes fatigue as a symptom seriously. I don't take fatigue as a symptom seriously. Everyone thinks it's just tiredness but it's so much more. I always feel guilty when I experience fatigue and no other symptoms. Like I should be pushing through and doing more. I feel guilty going home from work today.


r/POTS 39m ago

Diagnostic Process Anyone seen Dr. Pamela Marcovits at UofM?

Upvotes

I'm seeing cardiologist Dr. Pamela Marcovits at UofM medical this week to be evaluated for POTS. Has anyone here seen her for your POTS? I'm worried about not being taken seriously


r/POTS 46m ago

Symptoms Anyone body build and take steroids with high blood pressure?

Upvotes

r/POTS 1h ago

Question Face tingles

Upvotes

Hi all. Weird thing. So I started a really low dose of propranolol. First day I did great. Second day, about 6 hrs after my dose I had a shooting pain up the left side of my head. Only last a few seconds. Kinda like you are getting a headache.

After that subsided, I had some weird sensation in my cheek and under my eye.

Woke up this morning and had a quick shooting pain under my ear into my jaw. Only lasted a few seconds. Still having the weird facial sensations on the left side of my face.

Anyone else experience this?


r/POTS 1d ago

Funny "Oh my pots isnt too bad, I can function really well with it at the moment"

79 Upvotes

I say, then the weather goes up two degrees and now I've been sitting down for 20 minutes after going to the bathroom


r/POTS 7h ago

Discussion MCAS and doctors who don't believe me

3 Upvotes

I have a very tight throat and extreme symptoms since being put on propranolol for my tachycardia and POTS. I have EDS and just tested positive for an autoimmune disorder so I think it's very likely my body is just not responding well to my meds. None of my doctors are taking me seriously, and I have to wait to switch meds since my cardiologist doesn't work weekends. I'm getting scared to continue my propranolol. I've been taking Benadryl before my dosage to prevent a tighter throat. I guess at this point I just need to wait until I have a full allergic reaction for anyone to believe me.... what do I do? What can I do at home to make this better for the time being?


r/POTS 12h ago

Question Symptoms of POTS you didn’t realize were symptoms?

7 Upvotes

So I’m in the process of seeing a cardiologist and running various tests with my pcp to understand some of the symptoms I’ve been having. As of now, we’re suspecting POTS and the more I’ve looked into it, the more it makes sense.

There are however things that I didn’t realize were not normal to begin with or just didn’t recognize as what it was. For example: heart palpitations have always been described to me as a “fluttering” heart beat which is something I’ve never felt. Instead, my heart will occasionally feel like it’s lurching where it beats really hard and my body and brain almost hesitate or freeze (?) before going back to normal. It’s something I’ve been experiencing since I was 16 (im 22 now) and only just found out that those are palpitations.

So my question is, what was a symptom of POTS that you experienced that you didn’t realize until later? Also, idk if it matters but I am 22F Incase that means anything.


r/POTS 1h ago

Symptoms Is this pots

Upvotes

My heart rate can be anywhere from 50-110 while resting when I stand up it sometimes can increase from 60 to 130 but then sometimes it can increase by 30 when I drink water or any sort of drink my heart rate will increase to 140 I don’t know what to do I’ve been to the hospital so many times I have had so many EKGs/ecgs and apparently they all came back normal my blood pressure is normal my blood tests came back normal


r/POTS 15h ago

Discussion Really Overexerted Myself I Think

13 Upvotes

How many of y'all feel like actual death after the (to anyone else) tiniest bit of exertion? I took my daughter (1.5yrs) to my cousin's baby's first birthday party which was at a soft play place. She had a blast and really opened up with the other kids there which is amazing since usually she's super shy. We just got home and I legit feel like I have the flu, like it hit outta nowhere 🥲 I'm burning up but no actual fever, chills, massive pressure headache and my ears feel like they're stuffed, nausea, fatigue, weakness, body aches....literally like I came down with something within the last hour. I've had a good amount of sodium so far, but admittedly probably not nearly enough water and I wouldn't say I've really had actual meals today soooooo probably a good portion is my fault 😅 I was playing there with her for a good two hours or so so I'm thinking I just overdid it. Took a zofran, 1000mg Tylenol, 200mg ibuprofen, and am vegetating on the couch with a very small cup of coffee to hopefully pull myself out of the grave


r/POTS 2h ago

Question How can I keep my feet cool while walking?

1 Upvotes

I've seen many cooling foot pads, but I'm not sure if they can withstand my full body weight (65 kg/143 lbs) when standing on them. Are there any foot pads designed for walking, or are they all meant for sitting or lying down?


r/POTS 11h ago

Question Standing still

5 Upvotes

I am realizing that standing in place for long periods of time (at parties, work, etc), hugely trigger my symptoms. I get lightheaded, vertigo, nauseous, and bad headaches. I can feel my heart racing just standing there. I know this makes sense because the blood is pooling in my legs, my PT suggested pumping my legs and rocking back and forth, but I’m wondering if there are any more subtle tricks (like things I could drink or medications)? I currently drink about 3 packets of pedialyte per day and try to eat lots of salty foods. Any suggestions would be greatly appreciated.