My best friend is getting married a few weeks after me, we've been best friends since school, so roughly about 13 years, I don't see her massively often as she lives about an hour away from me and I struggle to handle fatigue after a full day of work and then doing house responsibilities, but when we see eachother it's like nothing has changed.

And I have her planned as one of my bridesmaids along with a few other girls, one of which has pots too.

However, she has announced her bridesmaids and I'm not one of them. I don't mention it to her but once I told her she's once of mine she apologised that I'm not in her bridal party and she wanted me to be so much but she didn't ask me because it's a whole day role and didn't want me to feel pressure to perform on the day if my health is bad.

Idk man, this just sucks, this illness has taken so much from me. I have good days and bad days with it, but I'm trying to keep positive and keep as much of a normal life as I can using all the resources I can. But now it's taken me away from being in my best friends bridal party and it makes me really sad. I feel like a bad friend because I feels like she can't rely on me for support, and I feel sad I can't be there for her like I imagined on her special day. I haven't said anything to her other than thank you for thinking of me because at the end of the day, her day is not about me. I'm just sad it's come to this all because of this stupid illness :(

EDIT: I just want to thank everyone for their lovely comments here, I really appreciate it. I came here because I didn't want to vent to one of my friends and it got back to my best friend that what happened upset me. I don't want to add to the stress of wedding planning and make it about myself. One comment put it quite well by saying it's like a grief almost. When I was told it was because of my health, its just another one of those reminder moments which hit pretty hard that I can't do the same things as others can, as much as I would like to in my mind. Those moments hurt a lot.

Whilst I do agree that it would have been nice to have been given the decision whether or not I thought I could handle it, I don't think it was done maliciously, and maybe a little bit more out of a place of ignorance than anything? I was thinking of maybe sitting down with her and chatting to her about pots, how it affects me and what I do to help it, as we've never really had this conversation. My wedding is before hers, so I will probably just speak to my bridesmaids in general about pots anyway, so they are prepared for what could happen on my day and they understand the accommodations I'm making for my pots bridesmaid too. That way, everyone is in the know about pots too and hopefully from there, there will be a better understanding of it amongst my friends. It's really sad I've missed out on the opportunity, and I'm sure there will be a bit of sadness when I go to her wedding and I'm not beside her but I can't do anything other than move forward from here I suppose. I might also have an individual chat with her about it all one day, but I'll probably wait until after the weddings are done.

11 twitch streamers have come together to raise awareness of PoTS and they have started their streaming marathon now. It would be great if we could show them some love and support today. They are talking about PoTS, where to go for help and all sorts. I don't want to go against any community guidelines but if it's ok I can post a link to who is streaming and when

my sleeping heart rate is on the higher end (not technically tachycardia but it’s usually between 60-85ish and if i’m laying down but still awake it can be as high as like 115-120 :( does anyone else experience this? and even if my resting/ laying down heart rate isn’t tachycardic it’s still on the higher end of “normal”

I went on a date last night with this guy I've been getting to know and we have been dating for about a month or so (no label yet). He's quite active and loves mountain biking, hiking, and all things pots kinda hates. Last night he asked about going on a hike for our next date, and that's when I told him about my pots. I’ve been working very hard at conditioning my heart and my pots has made strides of improvement, but I still need to take regular breaks when my heart spikes, and very difficult hikes usually take me about double the time to complete due to breaks. So, I GET WHERE HE IS COMING FROM when he says he is looking for someone who can do all his active stuff at a normal speed. It just sucks first of all, for a guy to stop seeing me over something I can't control AND have been working so hard to get better with, and second, this was kinda my first try back in the dating game since I had a horrible relationship a few years ago, and I really thought I felt a connection. Anyway this is just a rant, pots sucks, and I wish I could just be a normal human. 😭

Editing this to make perfectly clear, like I said before, I don’t blame him for wanting to be with someone who has similar hobbies. I think that is a totally normal desire. Do I wish he gave me a chance and was willing to go on one hike with me and just take some breaks on the hard parts? Yes, but I am more annoyed at the situation of my body and all the issues it has and how it just makes life more complicated.

So after pushing for the doctors to look into POTS for years I finally am able to start medication, I know alot of people here have tried it so is there anything I need to know?

The main thing I worry about is that it will reduce my heartrate (good ofc) but at night my heart often goes from 40-60 and I'm scared it might go lower then that... any advice would be nice or share your own experiences

So my fiancé (24M) has had pots for about 2 years but now it’s getting so much worse, the last few weeks he has barely been able to eat because all the blood in his body goes to his stomach and he gets like drugged and nodding from it, he also has histamin intolerance/mcas but his worst problem is the pots rn cause he can’t do dishes and he basically faints from showering. He eats a lot of salt and water, he trying to keep his electrolytes good but even when he does it all right he is like a zombie. Bcs of all his problems he basically stopped eating, he just ate small portions of cream cheese or frozen meat (he eats keto bcs of his insulin resistance), he dropped in weight to 54kg yesterday so to gain weight we decided he needs to eat a little carbohydrates to maintain his weight. I’m just screaming for help at this point cause idk what to do.

Also idk if this is a ”vent/rant” post or ”support” or whatever, just give me all the knowledge you got

I don’t know what to do anymore… it’s been 7 years of me getting worse with no solutions to the point that my mom has turned on me. I got diagnosed before and I thought it would make her happy that I had a diagnosis but she’s just the same amount of mean. I don‘t know if it’s because she‘s been in Menopause the same amount as I have been in POTS because she has a short fuse. I am a relatively calm person unless I’m flaring or she sets me off.

The problem is our relationship only works when I “parent” her. She needs all the support while all I get is yelled at now. Her tone is awful when I’m struggling and she treats me like I’m the worst person on the planet. I know I’m not the easiest person to live with but it just feels like I’m suffocating. She‘s the only person I felt closest to and the only one I thought I could talk to, but now I just feel alone. I have been there for her for 10 years to the point where if I had an issue I handled it alone. Now being sick and so severe I need a caregiver and she offered to be that, which would be great if she didn’t behave the way she does. She is also extremely hypocritical.

I tried to make a few friends but they disappeared because life got busy. The rest of my family has left me abandoned and turned on me for being sick. No one really wants to stay around a sick person and it hurts.

I am a very independent person so needing help all day sucks. I’m very trapped. I’m not asking for POTS advice, I just want life advice or something. I used to love being alone and didn’t mind but being sick has ruined that as well. Who wants to suffer alone.

I’m in the process of being diagnosed with POTS. I work retail, and I stand for hours at a time. It’s been increasingly difficult lately. I was given a note to turn in stating that I can’t stand for longer than 20 minutes at a time (for the time being), and upon turning it in, I was interrogated.

He said he’s never heard of POTS, told me that it’s normal for your blood pressure and heart rate to increase while standing, and that if I’m sick, then he’s sick too, and in a much worse way. He asked who “diagnosed” me and asked me how & why they came to the conclusion that they did. I got upset and told him it isn’t fair for him to sit there and invalidate me. He said he’s not invalidating me, but he has much more life experience and a history dealing with blood pressure, and that to him, it seems I’m just anxious.

It’s exhausting to be told that I’m wrong, that the doctors are wrong, and that there’s something wrong in my brain because I’m “too anxious” at all times despite going through handfuls and handfuls of medications to get it under control. I’m feeling defeated, lost, and broken.

I recently got diagnosed (Monday) with POTS and the Fitbit I ordered just came in. My Doctor wants me tracking any spikes I have and at what time they are, she says POTS symptoms are the worst in the morning.

I just had a big jump, it showed my resting before the jump at 77, but when my chest started hurting after walking around after my meeting my heart rate was 125. Google Health didn’t show the spike because (I just found out) it only records every 5 minutes.

What are we using to continuously monitor and track our heart rates? I’m sure I could've looked through Reddit to see what other people are recommending but I’m just now figuring out how to use this app.

So all summer long I was struggling with fatigue due to the heat and the fact that the sun seems to melt me. I don't actually mind feeling hot very much but my energy levels do.

Now that it's hit mid-October, I feel like it's really really cold. Judging by how other people dress and by how vigorous indoor AC is, I suppose others don't. And then there are times when I'm driving in the afternoon sun enjoying feeling warm but then I realize I have to turn on the AC so I don't flip back into melting-due-to-heat mode.

Anyway, I'm now under a blanket trying to get warm and hoping my brain will function well enough for the one task I wanted to finish, or at least make progress on, for today...

And does anyone have any tips to manage it? I just started working again (yay!!) and it’s been super annoying.

Hi everyone. I posted yesterday that I had an appointment and I felt optimistic that my symptoms would be taken seriously. I got a letter today from the hospital to explain my referral for POTS was rejected but as I’m known to the service they’ll see me for a review. I’m already under the inherited diseases part of cardiology.

I’ve had testing done before for this and in the letter they said that part of why the referral was rejected because previous testing didn’t show anything in relation to POTS. I’m frustrated because it wouldn’t. They did bloods, ecgs, a holter monitor and an echo. I remember at the time they asked if I was very active as my HR was high at the time but all I did was walking. I wasn’t at the gym lol. They didn’t seem worried I guess.

These tests are used to rule out other things not diagnose POTS so I’m feeling very defeated for my appointment Tuesday. It’s nurse led. Does anyone have any advice? All I can do is advocate for myself but I’m not very good at that at all.

https://petition.parliament.uk/petitions/781751

"The Public Order Act 1986 protects against publishing content that incites hatred based on race, religion and sexual orientation. Under this legislation, disability is not currently protected in this way and it may be legal to publish content, regardless of how harmful the rhetoric might be to the disabled community."

The reason why we get articles like "how having a disability became cool" in the Telegraph is because the Public Order Act doesn't protect us. This petition hopes to change that.

Hi everyone!

Recently I had covid and ever since when I stand up my heart rate increases by about 60 beats per minute. I have been fainting and experiencing chest pains everytime I do anything. I have not left my bed in days except to go to the bathroom and even then I sometimes fall/faint.

I have no idea how I'm going to return to studying and work as I need to walk decent distances for both of these. I brought up getting a wheelchair with my mum but she said we don't even know what's wrong yet.

No one will give me a solution for right now including doctors, all they're saying is to do tests but they mostly think it's POTS. I need a solution right now because I can't keep staying in bed all day. I don't want to use a wheelchair or mobility aid, I want to go back to living like normal but it doesn't seem like that's going to happen so any advice would be appreciated.

Thank you.

i have a lot of POTS symptoms but it didnt cross my mind that it could be POTS because i didnt know the diagnostic criteria or my pulse/blood pressure until recently.

i decided to do an at home laying to standing test:
when laying down my blood pressure was 101/51 with a pulse of 58.
by the time i was at 10 minutes standing, my blood pressure was 127/80 with a pulse of 90 and experiencing dizziness, nausea, shaking, sweating, heart palpitations, flushing and shortness of breath. i have also been drinking electrolytes today because i wasn’t feeling good.

i’m aware my results also show a decent increase in blood pressure which isn’t what the NHS typically look for but i believe would fall under hyperadrenergic pots.
it may also be worth mentioning that i have (suspected) ME/cfs.
i will repeat the at home test a few times when i can but in the meantime, is this worth mentioning to my doctor? what are the chances of them actually listening?

My new insurance refused to cover Ivabradine and I'm unable to get any more for some indeterminate length of time. I was on 7.5mg twice a day and am worried about stopping so suddenly, but I can't reach my doctors as it's the weekend.

Does anyone have experience with this sort of situation? Does anyone know if I am able to take a beta blocker if my rebound tachycardia is too bad? I'm really nervous since I also have mod-severe ME/CFS and am flaring up. I already tried and can't get any short term/emergency supply.

How in the hell are people wearing abdominal compression shorts without SUFFOCATING their crotches?!

I hate compression socks and abdominal/pelvis/upper thighs compression is more effective anyway, but I just can’t stand it. I have some high waisted shorts contraption from skims (picked it after combing through pots/dysautonomia recs) which works well for my symptoms, but is an actual sensory nightmare. The fabric is not very breathable and the top part rolls down periodically which is frustrating. The deal breaker is the crotch area- it’s just constant wedgies and suffocation from tight synthetic fabric. I can’t do it, and I am truly in awe of anyone who can.

I can’t imagine any similar product that includes shorts not suffocating my crotch unless it was breathable cotton or something, but I haven’t been able to find anything like that that’s tight enough.

I also have jelly bend which I don’t like for sensory reasons (not breathable, rolls up), and I’m not really interested in other tummy only products because I know compression in upper thighs/pelvis is important too. Plus, I CANT with tummy tubes rolling up from both the bottom AND the top.

Maybe this is just a vent, or maybe someone can help me beat this final boss. Going ham on salt pills and electrolytes can only get me so far.

All I want is for my blood to make it to my brain and my crotch to get some fresh air.

Like what do you mean my body can't be tilted 80 degrees without passing out? I had my tilt table test today and at the 2 minute mark all of a sudden my vision started to go and I broke out in a sweat and felt so sick I could barely talk or hold my head up so they lowered me back down while I cried and moaned. I've never fainted before but that was definitely the closest I've been to it. The nurse said it was one of the fastest tests she's seen.

My blood pressure remained constant and my heart rate jumped immediately from 89 to 119, then at 2 minutes it was 125+. So not even THAT much of an increase but my body was going through it. I have hypermobility too so I suspect the issue is a combination of stretchy veins and dysautonomia, but I need to have a follow up with my dr and see what she thinks.

But yeah it's so absurd that my body can't handle being vertical. I wonder if I could expire if I was held there long enough. It makes me feel so vulnerable. But also validated. I'm 32, late diagnosed autistic and ADHD, and spent most of my life wondering why it all feels so much harder for me than it is for others. POTS might be the final piece of the puzzle (although who knows, I'm collecting so many acronyms).

Idk if getting this diagnosis will help me receive treatment but at the very least I'm hoping having it in my charts will encourage Drs to take me seriously... In that way it feels similar to my reasoning for getting an autism diagnosis.

Is anyone else’s house SUPER humid all day and especially at night? I have two dehumidifiers and nothing is touching the heavy feeling. I even do the AC at times. It‘s causing lots of insomnia and horrible symptoms all day long.

I just want to know if anyone else is dealing with their home being this bad.

I hope that in our lifetime we will get to see more development and research into why POTS, EDS, MCAS, Endometriosis, Au/ADHD, etc are common together. Like I know that we kind of do, and some of it makes sense even if you aren’t a medical professional or researcher, like how EDS can mean stretchy veins leading to POTS, but I feel like it could be considered one big picture at some point yk?? I know that comorbidities are very common but something about this all just feels like something bigger, something more, like not necessarily a single diagnosis but I really feel like it could all be put into one at some point. I feel like this doesn’t make sense haha but also yk what I mean. I mean I remember I used to hear about all of this a few years ago on the internet and never thought much of it. To be completely honest I was even skeptical of some of it because why does everyone seem to have all of this all of a sudden? Well, they say karmas a bitch. This year I ended up bed ridden for 4 months after the stomach flu and ended up with multiple of these diagnoses. (if any haters come across this post I wasn’t even seeking for these dx… I even told the nurse preparing my TTT that I doubt I had POTS but then I was proven wrong lol)

It is so crazy how it can really just flare up and ruin your life like that. Luckily I’m starting to manage this all now but damn I would have never expected a measly stomach bug to wipe me out. I went from working 40hrs/wk while in school full time, intense cardio and strength training multiple times a week, to literally not being able to walk across my own house without feeling like I was about to topple over. All in the span of 2 weeks!

It’s also interesting to see how much of it has been prevalent in my life before the flare and finally have answers. I’m only on day 2 of propranolol at the lowest dose but tell me why my usual cardio workout is suddenly 10x more enjoyable than it ever has been. What do you mean I can exercise without being stupidly out of breath 5 minutes in?? Also all the years of being told that “everyone’s periods suck, just get used to it” was actually deep infiltrating endo and now I have a treatment plan!

Thanks for reading.

I honestly don't know anymore. Most of the time I'm too exhausted to function, let alone think clearly. The other day, I had a job interview, but I had to cancel it because of my POTS. I've been unemployed for a year, and it's heartbreaking to feel like my own body is keeping me from moving forward with my life.

Every time I eat, my blood pressure drops a lot, leaving me barely able to move. The same thing happens with other triggers, such as heat, bending over, and so many other everyday activities that most people don't even have to think twice about.

I'm exhausted. I'm frustrated. I'm tired of having to fight my own body just to get through the day...I hate eating because of how it makes me feel. I hate having a body... I'm so tired of living like this. I hate that even the most basic things have become a struggle. I'm tired of missing opportunities and of feeling helpless most of the time.

I wish I didn't exist.

Hi so I am in a bit of a pickle right now and any urgent help would be GREATLY appreciated.

I am in college and I have to take a keyboarding class where we practicing our typing skills. I am in the middle of a testing week and I have a test thats due by 8pm tonight.

Since I woke up I’ve had persistent shaking and just overall feeling super uncoordinated. I did the practice test and I passed, but my fingers seem to have a mind of their own because of my POTS symptoms.

I need a quick fix if anyone knows how to help. I have already tried eating something and drinking water, but to no avail. I am too scared to take the test because I feel like I’m going to fat finger the keys because of my trembling.

If anyone knows any quick hacks or tips that would help in this situation PLEASE tell me.
THANK YOU!!!

Stanford doesn’t take my insurance, so I’m considering trying out a private pay clinic. I can’t really afford it on my own, but my cardiologist won’t prescribe me any medication because my Holter monitor results are clean and my neurologist is convinced that POTS is purely a cardiology issue 🙃 My symptoms have been getting worse to where I‘m staying home from work sometimes. I’m a little desperate and willing to pay out-of-pocket with a payment plan or something.

I’ve come across Abram’s House of Healing and the California Brain and Spine Center. I also saw “The EDS Clinic” that says they also help with POTS. Has anyone tried any of these places? What was your experience like? I know there’s a few out-of-state options too like CognitiveFX and the Keiser Clinic.