Not that the Telegraph is worth more than a flush down the toilet, but wow their article from Sept 5th is so lame.

https://www.telegraph.co.uk/news/2026/09/05/disability-became-cool/

It's also online for free if you don't have an account, i don't know if I'm allowed to link that. Short read, but so irritating.

It's not hard to believe that after a mass-disabling pandemic, there is a mass amount of people who are now disabled, POTS aside. But of course, they then have to go on and take shots at trans people, and then POTS specific people.

She writes, "But, were they [disabled people] not decked out in the accessories of their disease, it would be impossible to perceive the conditions they consider to be so central to their interaction with the world.​"

......be so serious. I don't wear HyperPots like a purple heart, nor do I find Pots to be central to my interaction with the world. I'm literally just sick. That's all. I make it work, and that's that. I can't imagine why it bothers others so badly that people don't "look" sick or disabled.

Then she writes, "there is no 'demonstrable pathology or proof of a nervous system disorder.​ There is no pathology to prove a diagnosis'. It’s hardly surprising, then, that the rising number of women identifying as having Pots – with its relatable list of symptoms – is a prime example of what some doctors worry is an epidemic of overdiagnosis.​"

Pretty sure my endocrine tests showed proof of my nervous system disorder. No, instead, I'm just so relatable the way my whole body trembles uncontrollably because I dared to go for a walk around the block. But what does this lady know?

When I'm sick or feeling light headed I always reach for pickles and have been very intrigued to drink the juice.

Hi, idk if it’s the fight or flight or what but I have noticed recently how I clench my jaw pretty much 24/7 (even while sleeping) bc of my jaw pain and wondered if anyone else deals with this and if anyone has tips to relax or protect my teeth/jaw.

hi everyone. i’m 22 and i am at the absolute end of my rope. i have heds, pots, mcas, endometriosis, horrific gi dysmotility that has me on the brink of needing a feeding tube, and cci that has me on the brink of needing surgery. i’ve been trapped in a severe flare for years, completely bed bound most days. i had to drop out of school at 17. i’ve been too sick to go back or work or date or travel or do basically anything. the only thing i commit to, and have for the past decade i’ve been sick, is a two week vacation to florida every august. every single trip i feel better. my stomach functions easier, my head and neck hurt less, i’m able to walk and swim and move and be upright for most of the time, my fatigue lessens, i have a lot more energy. overall i feel 70% better than normal. once i come back home i very quickly go back to not being able to function. i’ve been stuck in a toxic environment and a home that i associate a LOT of pain and trauma with for over half my life. has anyone ever moved out of their toxic home and actually gotten better enough to the point of being able to function enough to live???

Finding out that’s MCAS? ! 😭

The October slide can be cause by many reasons like barometric changes, reduced sun exposure and vitamin d, seasonal illness more prevalent, fall seasonal allergies, stress of back to school and upcoming holidays.

I plan to use my rolly office chair around my kitchen more, as well as keeping protein snacks readily available in my bedroom if possible. Maybe take some immune boosting supplements like lactoferrin to help prevent illnesses.

What is your favorite go-to when in a flare that you could prep in advance?

last fall i couldn’t even leave the driveway without panicking, but i built up a good routine and started going for regular walks/ drives with the help of others since i can’t drive due to unpredictability with symptoms. a couple weeks back i went for a walk during a heavy/ humid day (dumb idea) and ended up having an episode where my heart rate hit 160bpm and then i started panicking which placed me at 190bpm. i’ve been struggling with going for walks again and i’m so bummed. my cardiologist is supposed to get back with me soon about trying another beta blocker because propranolol didn’t work. does anyone else suffer with severe anxiety that stems from this condition?

My blood pressure has been high, and my parents are insisting I take losartan for it, no negotiation until we see a doctor. The problem is it's making me horribly dizzy — worse than my normal POTS dizziness, to the point where it's hard to function some days.
I've told them how bad it's making me feel, but they keep saying I need to stay on it because of the BP numbers. I don't feel like I have any say in this — it's not "let's talk about options," it's "take the pill." I don't want to just stop taking it without medical input, but I also don't know how to get them to actually listen to me about the side effects.
Has anyone been in a similar spot — a parent or guardian insisting on a med that was making things worse? How did you get them to take the side effects seriously? Did a doctor's note or a specific ask (dose change, different med) help move things along?
Any advice on how to actually get heard here would help a lot.

It’s hard because arguing when them triggers my adrenaline to go skyrocket, in turn validating their reaction because of my high bp.

does anyone have any advice on how to prevent hypnic jerks at night? i’m in a nasty flare atm, i unfortunately don’t have anything i can just take readily so i’m kind of on my own with it a bit, but anything helps. breathing meditations etc whatever works for you guys because it’s driving me insane 🫠

My girlfriend of two months has been telling me about her POTS and how it affects her everyday life. I did some research and it doesn’t seem completely life altering but I wanted to know if there are any little things I can do to make her life easier. Is there anything specific I need to be aware of? Sometimes she’s gotten up too fast and I’ve had to hold her up for about a minute and whenever we kiss standing up she loses balance because her eyes are closed. That’s all I’ve noticed thus far. Any advice would be greatly appreciated.

Does anyone with hPOTS experience dramatic parasympathetic shifts during their hyperadrenic flares? For me, it’s a sudden super calm, melt into the couch feeling. After having crazy adrenaline dumps, it actually is welcome relief. It almost feels like being mildly sedated. It’s like my body overshoots and swings in the other direction.

So says my trauma therapist. I was/still am living through a horror movie, written specifically for me. Buckle up, this is a looooong one.

It took my job, my education by forcing me to drop out before i could start my bachelor's, my financial stability by leaving me 200 dollars overdrawn, ​I lost 20 pounds, I lost my autonomy, and a suspicious amount of hair comes out when I comb it. I've been in a race to the bottom since mid April and never realized it until I finally crashed.

Every class I had to drag myself to because it was getting harder and harder to go, every milestone I burnt myself out to still hit like award dinners, college graduation and even going to work still after having been in the ER not even 5 days prior in a quite frankly horrid state, was accompanied by a giant, swelling, dark cloud that I couldn't see, but that I could still feel, until one day I found my final resting place among the 4 walls of my disgusting room, left dirtied because I couldn't find the strength to clean it. And I rotted, for months. My world lost color and purpose.

I had to endure 12 hours of a sweltering 80° room after my power went out on the 4th of July because I couldn't get out of bed. I didn't even sleep because I had to stay up misting myself with a spray bottle because I had lost the ability to sweat. To add to that, my stupid fucking sister fled to a guy she JUST MET because he still had power, and left my 18mo niece here who because absolutely fucking inconsolable because she wanted her mom, she was scared of the fireworks, and after 8pm it was pitch dark in the house, and then MY mom using the last of my phone battery to try and call her to demand she come home.

Countless ER visits, and medical specialists, and so many blood draws that I've got tracks on my arms.

5 months later, after whatever series of foul fucking viruses I caught caused my own immune system to go fucking nuts and turn on me, can I now finally somewhat exhale. The loud thumping when I stand is gone, the floor moving when I stand is gone, my autoantibodies have dropped down to an undetectable state, I can eat what I want when I want (but not quite how much I want yet), and i even managed to get a fucking job. My nerologist described the lingering symptoms as "background static" that I need to wait for to clear out before a return to normalcy without POTS. But, I am so utterly fucking traumatized from the events of the last 5 months that none of that really matters. I am still that woman stuck in a hot room completely fucking helpless and ready to be consumed by heat exhaustion. The work I put in to even get to a state of being able to just get up and go without thinking feels trumped by the SHEER HORROR OF EXISTING that took place before and during.

I live in the past I remember for some reason, and because let's be honest, If I remembered anymore than I do now I would become hysterical. Thank GOD I don't remember much else from when I was at my worst. I don't want to.

There's still so much I can't do yet. I can't mall walk, can't walk around and grocery shop, can't go to my favorite museum, I cant go to the beach while it's still warm enough to because im not sure I could handle the long walk from the parking lot to the shore, I can't even walk around the block, I have to practice walking laps in my house while every alarm bell is screaming at me to sit down, not because I feel anything, but because I am SO fucking traumatized that I can't trust my own body to handle a return to normal boring shit.

I miss the beach. I miss living in full color. I miss thriving, not just hitting metrics like "walked for 3 minutes today and felt fine, had x amount of salt". These metrics, albeit important, do not make me happy even though I thought they would. What is it I even really want anymore? Cuz I'll tell you one thing, I will never be the same person mentally ever again. That's not happening.

I have my first appointment today with a consultant regarding a potential POTS diagnosis.

I’m scared I’m going to be completely dismissed, does anyone have any advice on how to advocate for yourselves?

We're in the US. My partner is an XL and 5'11", IDK if they need to go all the way down her calves for leggings? would love any recommendations but we cannot swing 150$ right now for the brands I see here. links appreciated.

I was officially diagnosed with Dysautonomia in June by a cardiologist. He didn't diagnose me with POTs because "pots is trending and would make it harder for insurance acceptance later" and he didn't feel comfortable making that diagnosis. He recommended increasing electrolytes (I was already doing that) and 25-30mmg compression socks in summer and 25-30mmg compression thigh highs in winter due to cold feet and hands during cold weather, and recommended my PCP get a rheumatologist appointment going, she (my PCP) did the minor blood work and my ANA popped a 1:80 positive in Speckled Pattern. Rheumatologists local to me aren't accepting any new patients for a few months out so we are waiting for that. However during this process, I have had a depression flair up, and have suffered migraines for years on rare occasions, however they are getting more frequent. I take Zoloft for depression, and imitrex for migraines however I am not supposed to take them together due to Serotonin Syndrome, Zoloft has now started messing with my eye sight a bit and the imitrex if I take anymore than a quarter of the prescribed dose, it sends my tachycardia into high gear. I am looking for recommendations for medicine for depression and migraines that work well with each other and don't have any side effects that could mess with my already weird heart rates.

I am also uninsured, and that has made finding a cost effective and safe options a lot harder for me, the current Drs I am with have a financial assistance plan that helps me be able to afford it. Thank you in advance for any other opinions/options.

I have most symptoms of POTS which started after 2020. Back then it wasn’t so bad. A lot of heart palpitations, fatigue, and anxiety. But it didn’t interfere with my life.
This summer, I experienced severe heat exhaustion twice. The second time landed me in the ER due to severe dehydration and not being able to get my heart rate under 160 while at rest after an hour.
The second heat related episode was during a stressful move from an emotionally abusive home. It was hotter than hell out as well.
The ER just monitored me and gave me IV fluids.
I’ve been struggling with severe heart palpitations since, shortness of breath, warm/hot showers make it worse, I feel like shit for most of the day and better in the evening, I’m nauseous and don’t have much of an appetite, I’m so dizzy and lightheaded which also gets better later in the day, I’ve always been heat intolerant so that is nothing new, the brain fog is horrible, my anxiety is the worst it’s been in years.
I’ve been to urgent care three times due to the heart palpitations with again, no answers. I wore a Holter heart monitor for 2 days and that was normal.
I don’t know where to go or who to see. No one had brought up POTS. My sister who has it, was the one who brought it up.

I felt like I was getting better until I lifted some heavy furniture for 5 mins and everything just went back to how it was after my heat exhaustion. I don’t understand.
How do I get a doctor to take me seriously? This is interfering with my life to the point it’s hard to function.

i was just diagnosed with pots and i’m both relieved to have an answer to a problem that has been going on for years and also miserable that this was the answer it came to. a chronic illness that will affect me for the rest of my life. i spent three nights in the hospital due to severe nausea, vomiting, heart palpitations, the works, and was able to walk out with some compression socks and a diagnosis. the problem now is that i don’t know how to deal with any of this. i’m a busy student, i have so many goals and career ambitions and it feels like i can see them slipping through my fingers. i’ve been nauseous and flared up for five days straight with no end in sight. i already missed so much class and activities for my student organizations and i hate that i still don’t feel better even after resting for that whole time. the nausea is the worse part of it. it’s just constant, so much so that i’m worried there’s something else going on there like gastroparesis. anyway this is just never how i saw my life unfolding and it’s a lot to take in. i live on the third floor of an apartment building with no stairs like even in where i live im not set up for success. if anyone has tips to come out the other side of a flare up or on how to cope with the emotional aspect of this i would be so grateful.

Has anyone been able to fly with POTS? I am really worried about how I would tolerate it. How was it for you? Thanks!

It’s been a year since I got pots almost exactly (I think. I got it full blown after some mystery fever I didn’t know I had) anyways, I’m not typically a coffee person. I’ll have caffeine here and there but only from diet soda or a matcha latte (not performative I swear), but I’ve never had issues. Today I went to a cafe to chat with someone and there was a milk tea coffee with tapioca. I haven’t had one in years and it seemed appealing at the time. I forgot to specify the size. I usually get a sm-med, but I received a taller one.

I felt fine at first. Even pretty good and a bit more energetic. My stomach got a bit upset while I was there, but I pulled through. 5 hours later I feel like absolute shit.

I used to be an alcohol person. Downing shots like no tomorrow, going out for drinks all the time. It was probably for the best, but I can’t handle a single drop of it anymore ever since I got pots. Even the scent of liquor makes me feel sick. If I were to have some, near immediately I feel like I have a really shitty hangover. Right now I feel the same way. My eyes are extremely dry, my vision is blurry, I feel lightheaded, my head kinda aches, I have SOB, and I feel shaky. A bit nauseous too. I hate being nauseous.

The reason why I’m asking is because I’m not actually sure if it’s pots or not. My symptoms are typically mild despite my HR going up +60-70 in the mornings. But I also have been taking 50mg of naltrexone for more than a year, so I figured maybe it was that. pots causes so much shit that I can’t ever tell if I’m feeling an actual symptom of something else, or if it’s really some kind of flare up. The only thing making me suspicious it really is pots is because I also feel the same way after walking up multiple flights of stairs.

Hello! I deal with hyperadrenic flares and I would like to know what others experience. Are there certain triggers for you? How long on average do your flares last? What are your most challenging symptoms? Do certain meds help you, and if so you take them daily or as needed. Are there lifestyle adaptations that keep you from flaring frequently, etc.?

MY CHEST HURTS SO BAD AND MY TEETH FEEL NUMB MY ARMS TINGLY I MAKE STUPUD DEFISICONS😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭

Before my illness hit me like a ton of bricks many years ago, I was a rising vocalist and voice actor.

I’m finding that with dysautonomia/POTS and gastroparesis/GERD, my vocal range is minimal. My voice is weak. I become symptomatic after speaking for a comparatively short amount of time. My voice sometimes cracks or just gives out entirely—like my mouth is open and no sound will come out (usually mid-high range).

I miss this part of my life. It’s one thing that, even though I sometimes got paid, I did it because it made me happy.

How can I start reclaiming my voice?

Hey all! My pcp has been trying to get me referred for testing for POTs (we've already done a standing test and a heart monitor, but we need cardiology to review it) and I'm running into a wall. The clinic tried referring me to Legacy, and the referral was denied bc "we don't test for that here". So now they keep trying to refer me to some clinic out in Milwaukee that is both way too far for me as someone without a car, and expensive with deposits just to schedule with them. I'm becoming increasingly agitated as I've already told them several times that I cannot go there and they keep resending me the same referral message.

Is there anywhere I can go in the Beaverton / Portland area that actually does the diagnostics? I am planning to call OHSU already, but wanted to see if there are any other suggestions since they're historically very difficult to get an appointment with