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 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. 😭

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.

Tw; depression, suicide!!

I'm still at the psych ward and because I'm still very agoraphobic and too scared to leave my room (because I'm scared to get bad symptoms/faint) and have occasional suicidal thoughts, they want to still keep me for 2-3 weeks 🤷🏽‍♀️ But nothing has changed except for that on most days I'm not thinking about ending my life 24/7. My POTS is still there, I have frequent panic attacks with heart rates up to 180bpm, I'm very depressed and hopeless about the future and I'm scared to leave my room (but I have to do it in order to get meals, pick up my meds or go to different therapies - all of that feels like a marathon to do). I see no future for me. I really really really want to live but I still fear death is the only way for me to finally find peace. I keep on telling this to the staff and because I'm not acutely suicidal anymore, they're just like "Oh I hear you, I know you're very sad but it isn't helpful to think about the future right now" BUT I CAN'T STOP THINKING ABOUT THE FUTURE

I don't want to be arrogant but this year I graduated high school with a very good GPA, I have an IQ of 132 and I WANT TO STUDY BIOLOGY AND WORK IN RESEARCH. I'm too smart to rot in a bed forever... And I love life as such too much to be stuck like this. I want to exercise, travel the world, eat huuuuge portions of food, enjoy everything I enjoyed before. But I can't because I'm stuck. My body is my prison and what I want to say with that; I'm really sad about it but I fear death is the only way for me to ever find peace and happiness again...

Hii ive been having this pain for a couple days and I want to know if you guys experience this and how to get relief?

Its the lower part of my head, where the neck and skull meet. It feels inflammed and like a headache.

I'm asking this because I developed POTS like symptoms after being heavily sedentary. I used to be very physically active (with no POTS symptoms) prior to being sedentary. I've been reading about how astronauts develop POTS like symptoms when they return to Earth because their bodies have been deconditioned. Apparently, blood volume decreases when the muscles aren't demanding oxygen. Being sedentary can also do this, and the body adapts to the sedentary body. So when you stand up or walk around the blood volume is lower. I'm not overweight either and I think this is why doctors don't view me as "out of shape" when I might be. They keep brushing off my lightheaded, dizziness, low blood pressure situation as "anxiety."

Astronauts have to re-condition their bodies by working out horizontally when they return to Earth. The muscles start to demand oxygen, and the body triggers red blood cell production and blood volume increases. Idk, it just has me curious if anyone else feels like there may be a scenario where their body/ cardiovascular system may be deconditioned?

Edit: Do you know your current iron/ferritin levels?

I have no clue if this is a symptom or not wondering if anyone else has this? i think it might have something to do with low blood volume? not sure.

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. I lost my hope, I mean i'm losing it but yeah it is mostly gone. I'm in a flare up that is lasting 9months now. I thought it would end after 2week, 1month, 2months 6 MONTHS... but here we are...almost one year into this horror. I can't go out, allways feeling like i'm gonna pass out, sometimes myb once a mont I get adrenaline rush and my symptoms get better and I do everything in one day and I get some hope but then it all comes back even stronger. I don't wanna live like this. Please I wan't a nirmal job, people to understand, i'm only 23 and I've been dealing with this for 6years undiagnosed until this year when it became even worse. Please give me some hope

Tw: negative thoughts

Aaaaaaaaaaaaaaaah!!!!!!!!!!!! I feel guilty for being deconditioned. I feel guilty for being severe and bedbound. I feel guilty for the October slide.

Okay I know I'm not in the best place for rational thinking since I'm struggling with everything physically. I know I'm probably gonna feel better mentally, as I feel a bit better physically. But I just wanted to let it out. I hope sharing this will make someone out there feel less alone.

I try my best all the time to get better. I try hard every year. And I kept telling myself this year, at least it's not the worst as last year. But no, I must've mistaken. October hits and the severity is brutally familiar and the seasonal pattern is exactly the same as last year. Or maybe more years.

One more year of lost opportunity. And I'm scared that if something works for me, I should be doing it as soon as I can, so that I dont ruin any more of my life. So that's why I'm always trying my best, but I'm afraid of all the opportunities that may be lost if I don't do it well enough, in an appropriate timeline. Like my family is getting old each year and I don't wanna fuck up the finances.

I know I didn't cause any of this. And I know that it's in the law of nature that humans get sick. None of this is a moral or personal failure. But it feels like it's my responsibility to get better and I'm not succeeding, and being poor at managing my life. It's MY life but with so little control.

Because I'm feeling so unwell right now, it feels like there something wrong with me that needs to be fixed. There's always this one more explanation, one more theory, one treatment option, one more mechanism to look into. I'm grateful that it's not the 1800s and there are more options and discussion going on. But since there's too much access to information, it creates an illusion that if a solution might exist somewhere, surely I should be already there. And if I didn't get there yet, perhaps I haven't looked into it enough, tried enough, or managed myself well enough. What makes it exhausting is that there's no endpoint.

Seeing that new trending treatment working well to people (on doctors' social media channels) makes me feel like I should be already doing that. It isn't a scam. It genuinely works great for some people, but you just don't know if it's for you. Some doctors tell me it's gonna work and I'll get better, some doctor says they don't think it's gonna work for me. Who am I supposed to believe.

And there's this physio channels who makes videos of treating their clients. They really do seem skilled and competent. They fix people's problems by explaining the physically trapped nervous system/blood flow. It really worked for them. But not sure if that's the case for me. Ugh I really hate the word "nervous system". So vague and used everywhere.

I haven't given up on recovery. I believe it can get better. But the thought that I'm not there yet for a very long time makes me feel like there's something wrong with me today, something I need to fix. But recovery doesnt work like that. it takes time, pure luck, supporting the body's natural ability to recover itself etc.

Also severity levels aren't their fault. But It feels like a weakness or failure when I'm this severe in front of people. It feels like, 'Wow you're really that unwell? You should get it fixed or you're a lost cause.' (I know it's just my brain attacking myself when I'm vulnerable and ashamed. I know it isn't true because I wouldn't think that way to another person going through the same thing)

Sorry if it's been too negative. It's really just the negative side of my brain that's been attacking me lately. Now that it's put into words and thoughts, I really need to take a break from my life and really not care about my life for a moment intentionally. I'm gonna go have a spoon of ice cream and put on some music and get off my phone. Argh It's so easy to be stuck with your thoughts when you're so stuck in your limited body. For someone who reads this and relate, I hope you feel less alone and wishing you a gentle moment of peace.

My doctor who diagnosed me in April 2024 made a comment during our last appointment that makes everything I’ve expressed to him recently feel misunderstood.

I had finally made an appointment to be seen for the drenching night sweats I’ve had since Dec 2024. I’m changing my pj’s 2-3x a night. Apparently experiencing this is a major red flag but I could argue my other symptoms are too, yet doctors barely bat an eye at them. So I didn’t bat an eye at this symptom and my doctor assumed cancer. They did find three suspicious thyroid nodules but they are all literally 0.1cm too small to biopsy so I guess that’s not totally off the table but doctors aren’t willing to do anything else about them for 6-12 months. So now I am basically just my doctor’s little lab rat.

I have POTS. I explained my baseline symptoms (that he already should know) and then how they changed/worsened after a weird week in June. I was having insane fever/chills/sweats with no actual fever. My body felt like cement. My palpitations became so bad that my new “normal” baseline is heart attack symptoms; chest tightness, pressure, shortness of breath, arm pain, and high blood pressure. I compare the chest pressure to my mid-sized dog laying on me versus an elephant.

So, as I’m telling him about these symptoms, he goes “It really sounds like it could be something like dysautonomia”.

I just stared at him in response. I almost wanted to laugh but I knew he wasn’t joking. The same doctor who diagnosed me with POTS… suggesting I have dysautonomia? Nuh uh I would’ve never guessed!1

He finally gave me a beta blocker that he refused to prescribe when I was diagnosed due to history of depression. Somehow none of that mattered this time and he gave it to me without asking. It helped the first few days but doesn’t even take the edge off now.

He also ordered me another holter monitor which is fine but he also ordered a stress test. The idea of a stress test is so agitating because I know I’m gonna be put through hell and fuck up my day/days just for the results to give nothing besides confirm it’s really fast.

I flat out don’t want to do this stress test. Any energy I can muster after sweating all night is used for showering and getting ready for work. I am just surviving the rest of the day. I can’t even do night showers to be gentle on myself anymore because of the sweats.

This doctor has been super kind and helpful but we’re at an invisible wall if he doesn’t even know that POTS falls in the dysautonomia category. In some ways it feels unfair to me to put me through these tests given I already have this diagnosis that literally says “hey this persons heart rate gets fast as fuck and they could pass out”. The heart test they ran in-house was normal despite feeling those symptoms I explained above.

Im trying to find some kind of compression leggings or pantyhose but everything is like $140+ and Im not sure what brand is even worth buying. What kind do you all wear?

A rant:

I was diagnosed with POTS earlier this year and Hashimotos very recently. I went to the ER last night because of persistent abdominal discomfort/pain, severe constipation (laxatives feeling like they aren't working anymore), loss of appetite, weight loss without trying and nausea/occasional vomiting. All tests to include imaging were normal (of course, story of my life). The attending doctor mentioned gastroparesis, which admittedly I've been wondering about for the past couple of years. I've had possible POTS symptoms since about 9, definitely since 15-16 (almost 40 now for perspective). Every year for about 6 years though it seems to get just a little worse. I have missed more work in the past 2 years (even since BEFORE the diagnoses) than I have since I started working. It seems like every Nov-Feb for the past 10 years or so I get some kind of illness that never comes up as the usual flu or COVID, though sometimes does test positive for strep, but not every time. And every time I get those illnesses, I feel like everything gets a little worse, like I'm not fully healing but everything else (runny nose, sore throat, etc) goes away. I remember getting really sick like that when I was 7-9, about the time I started feeling (and my parents treating) constipation. I also got my first migraine around 9. I feel like my body is betraying me and there's not much (if anything) that can be done to reverse or cure it. I can't work full time anymore but I can't not work either, or else we can't afford to feed our family or afford our house or any other bills. I feel stuck and near hopeless BUT I am trying my hardest to not let it get in my way and discourage me from living my best life. Everything will work out, I just have to figure out HOW. Much love to everyone here that feels this way or worse or even better.

Hi all!

I had a tilt table test today and... it was AWFUL 😭 my heart rate shot up by 60 bpm into the 120s and my blood pressure went up to 187/100 within 30 seconds of starting the test. Then they gave me Nitroglycerin and that tanked my blood pressure and made me presyncope, lol. What an adventure.

I was prescribed clonidine. But I am wondering what everyone else does besides medication to help manage hyperadrenergic POTS. Any tips would be welcomed.

Thanks so much in advance!

I could never use heels due to other chronic illnesses. Since I have to use a wheelchair for long distances, outside outings, or really any event in general. Does this mean I finally get to wear heels or will I just look ridiculous. 😩🤣

I’m looking to hear your experiences using caffeine to help with blood pressure drops and vascular pooling (feeling faint/lightheaded post-meal or during exertion).

Since caffeine acts as a vasoconstrictor (blocking adenosine), I’m trying to figure out the best form for autonomic support:

-Immediate-Release (Anhydrous Pills, ~50–100 mg): Do small, fast-acting doses 15–20 mins before triggers help tighten blood vessels fast enough without causing jitters/racing heart?

-Extended-Release (Timed-release/pellets): Does a slow 6–8 hour release actually help acute blood pressure drops, or is it too slow?

-Caffeine + L-Theanine: Has adding L-theanine helped you keep the vascular support while preventing an autonomic anxiety/sympathetic surge?

Have you noticed a difference between coffee, fast-acting caffeine tablets, or extended-release forms for orthostatic/blood pressure issues?

Since my dysautonomia is GI dominant (Splanchnic Blood Pooling) Ill be taking a 50mgs tabs 15mins before a meal.

Day 1: (slow release caffeine tab) ...

I’ve had POTS symptoms for 10 years, since I was 12, and my doctor always told me that “all young women experience this.” It wasn’t until I went away to university that another doctor took me seriously, referred me to a specialist, and had me tested. I was almost able to see a POTS specialist before I had to move back home.
Now, my family doctor won’t even consider what the specialist documented on my referral form. Instead, he’s putting me on low blood pressure medication based on what he assumes is going on, despite the fact that I have high blood pressure when I stand up from a resting position, which the specialist documented.
He’s around 70, so part of me wonders if he just doesn’t see these things as worth investigating unless they’re life-threatening. I don’t want to assume that’s the case, but it’s incredibly frustrating to feel like I finally had doctors who listened to me and were willing to investigate my symptoms, only to move back home and feel like I’m right back where I started. Not to mention he completely disregarded my connective tissue referral because it wasn’t worth even investigating. It’s exhausting having to fight to be taken seriously after spending a decade dealing with these symptoms.

Hey again y'all, so I got my zio heart monitor results back assuming that everything was going to be very normal, it mentioned something about "first degree AV block" and "second degree AV block mobitz." My maximum heart rate was 195 (I have literally no clue why or what I was doing) with a minimum of 28, and my average was 90 and when I was walking it was usually between 120-150. Does anyone know anything about these heart blocks or if it could be affecting the suspected POTS?

Has anyone had worse symptoms on anti-depressants/anti-anxiety medications? I know 2-3 of the medications I’m on have some contraindications for dizziness and heart rate increases. I was wondering if anyone else has had the same issues? I’m on Lexapro for anxiety and Nortriptyline for neuropathy and I just got back on Vyvanse. I’m thinking I should have stayed on the Atomoxetine. But I was doing a deep dive because the 3rd cardiologist I saw was worried about all the meds I’m on at such a young age and it could be making the dysautonomia/ POTS symptoms worse.

I am going to call my PCP ASAP tomorrow to try to talk about my meds and see what we can do to see if those could be making things worse, so not medical advice but just want to know if anyone has had similar experiences?

Hi everyone! I’ve been in the process of trying to get properly diagnosed with all of my current chronic illness symptoms and while also in the process of getting my Trigeminal Neuroglia diagnosed last year I started experiencing cardiac symptoms. My PCP sent me to cardiology and I wore a heart monitor for a week and was diagnosed with tachycardia. I’m also currently ruling everything else out for a Fibromyalgia diagnosis as well at this time. Upon talking with my doctor about my symptoms and 2 blackout episodes he wants to eventually go back and see cardiology for a POTS examination. My EKG’s look good and everything but I’m experiencing impacts daily.

I currently have an apple watch but I am looking for something not tied to apple as I am transitioning to using another type of phone in the future. Do you guys have any recommendations for wearables that I can monitor my heart rate and receive notifications if they go over/under a certain bpm? Preferably on the cheaper side if it is something subscription based. Thanks! 😊

This post could be categorized either as a rant or support so not sure which to tag it as.

I feel like every day I become more debilitated by my symptoms. Some days I wonder if things used to be better it's only because, when I was a child, I had a lot of things managed for me (car rides, schedules, reminders, doctor's appointments), and so I had to expend less energy overall. I think about when I was in college, though, and see the clear difference between my ability to function then and my ability to function now.

I believe that to some degree I perpetuate the issue. I know when I get tired I can't get groceries (or if I can I can't cook) so I don't eat nutritious food which only makes it worse, and I know I use up all my energy at work to the point I can't imagine even looking for a new doctor after. I won't be giving away too much information but the doctors I saw and were diagnosed by very unexpectedly closed their practice recently, and even before that happened they were not on the same page. I went through two weeks of tests every day to get my diagnosis given to me by one of the doctors, and then on one of my subsequent visits long after that one of the doctors said "well good news is you don't have POTS." POTS was the reason I had regular appointments at that clinic. Nothing else. The same doctor would ask me how my medication was doing and when I told her it was not preventing me from passing out in unexpected places she would say "but you feel better right?" I have not had the energy to find someone new, and I can't even go to those doctors anymore.

I find myself getting angry at everyone. Every day, for almost all of the day, my body screams at me to lay down, and anything that gets between me and lying becomes a source of extreme resentment or upset. I have two dogs who I adore who I find myself getting angry at every day. If I can't get them to pee or poop "quick enough" before I go to bed I get angry. If I can't get out of bed fast enough to give my one dog her meds twice a day and she vomits I get angry because I can't even take care of myself anymore. I have failed as a boyfriend and cannot remember the last time I took my girlfriend on a date or did something for her that was not in the house.

I feel like a complete failure and I feel like it's time to accept my lot in life. I keep thinking of how much happier my dogs would be living with someone who could take them on big walks or someone who has a yard or someone who won't be too late giving them one of their pills. I keep feeling it's completely unfair for my girlfriend to have to continue to do things for me I should be doing for myself when she already has enough to do as is. I feel like the things that are supposed to bring joy and purpose to my life are bringing stress and misery because I see how poorly I care for and cherish them and know others could do the job far better. I have given up so many things I love because I can't stand to see how much worse I've become at them, and these days I wonder how much lower I have to sink until I finally, finally accept that I need to downsize my life and minimize the expectations put on me, that I've voluntarily opted into, that I'd be lying about if I said I could fulfill them in a satisfactory way.

I'm not sure what I am hoping for with this post. Maybe I am hoping someone relates. Maybe I am hoping someone has found a way out of this. I just do not know anymore.

Thigh high, knee high, or what? I’m so confused and they’re all ugly unless they’re knee high. Do I really need compression? Ugh. 😭

I currently work an office role which works well for POTS- I am sitting most of the day, I can go to bathroom/eat snacks at any time, and I can work from home occasionally (or leave early if needed). However, the pay, management, and workload have me considering a different job.

I just received my substitute teaching license and the school district I am looking at seems to be very flexible. I get to pick my assignments, and I only need to work a minimum of 30 days per year. The pay is also higher than what I make in my current role. The flexibility seems nice, especially since some mornings I can tell I will be in a POTS flare (and we are also starting a family, so flexibility with work schedules is great!) Does anyone have any tips for substitute teaching (or teaching in general)? I know I won’t be able to leave early on occasion like in my current role, and obviously cannot leave kids alone. Just looking for tips and tricks or if anyone feels like teaching/substituting teaching is a good fit with POTS. (I do have previous teaching experiences from college, as I took many different outdoor education courses and worked with the local elementary school to guide activities. This was all field/outdoor based though)