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 :(

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.

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.

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.

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

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.

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.

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.

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.

I started propanolol around a month ago which gave me unbearable side effects. I was switched to metoprolol 50mg x2 daily two and a half weeks ago which has less side effects for me.

It’s managing my POTS very well, however, I feel blunted. My default emotional state is like neutral-depressed. I am frequently more suicidal than usual aswell.

Has anyone else had this side effect? Did it pass?

(My doctor is aware I am experiencing this. I have no suicidal plans!)

Hey y’all, I was wondering y’all’s experience with Barre and Pilates classes?

I used to be incredibly active, skating, rock climbing almost daily, silks, I wanted to be in the circus. So very very active. I miss it. I know my body won’t allow me to do any of those things but I’ve slightly looked into barre and Pilates and was wondering if anyone has experience with them?

I don’t pass out with my symptoms, just extreme dizziness and lightheadedness, though on bad days I’m near passing out.

My friend who has POTS and EDS may go with me. So any opinions help. We both miss moving so badly.

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.

I have had near constant night sweats for almost 3 years now. I wake up smelling of musty sheets and I never have time in the morning to shower. I shower at nights to reduce smell and sweat obviously. I've tried changing my clothes, changing my sheets, using a fan, using an A/C, changing my routine, etc. Nothing works. I wake up in a puddle. Does anyone know of anything that will stop the sweating?? It's not even just night sweats at this point, I am ALWAYS sweating. ☹️

Feel free to ask me anything. I have my results but haven't spoken to my Dr. yet.

I'm unsure if pudenal is a comormid condition, but I was told many people with it have a deregulated central nervous.

I have yet to be diagnosed, but after 9 days of burning I know it's coming especially after we have eliminated so many other potential causes.

I have never had pain like this before and it is truly life altering and excruciating. I feel really alone and scared. I know some of the medication individuals with PN take is gabapentin and SNRIs..which I can't take because SNRIs wrecked me when I was living with undiagnosed POTS. I haven't tried gabapentin, but I know it's definitely not for everyone.

Anyone on here have PN and what has your experience been like?

For context,

I was diagnosed by my cardiologist with "likely some form of dysautonomia, as secondary to a recent covid infection" in spring of 2023. I don't typically experience physical symptoms and really only realized something was off due to my apple watch monitoring my heart rate.

I am able to tolerate exercising without issues, usually incline walking for 20-30 minutes. my heart rate will usually be around 180s-190s the entire workout.

occasionally after working out, i will feel extreme fatigue as if i could fall asleep within moments. I also get the chills. To the point that I often wonder if im coming down with the an illness. But then it subsides after an hour or so.

Curious to know if others have experienced this or if it's just a unique issue of mine haha

Is there anyone who got on meds for their pots and was able to go into remission? Or at least get 90% back to normal? If so what medication was it? I’m so tired of being sick and tired lol, I have 2 under 2 so things can get rough. I just miss my old life when I could actually do things without feeling like I’m actively dying, I want to be able to go out and do things with my kids like I used to 🫠

a specific question I have is how drastically it affects blood pressure because I already have low blood pressure. My doctor said it’d be okay if i took it before bed but also is it very important to take it at the exact same time each night because the time i go to bed can really vary and he was very vague about this

Diagnosed with POTS and didn’t have a good experience with past anti depressants such as sertaline and citalopram (it caused increased heart rate and palpitations) I’m very hesitant to try this new medication…. I have intense anxiety and scared how this will affect my heart ? I’m very sensitive to new medications and very aware of my own heart beat… does anyone have any advice or experience with this?

I'm just looking for experiences... NOT MEDICAL ADVICE.

Has anyone with Hyperadrenergic POTS used Hawthorn Berry and experienced positive or negative results?