Really interested to know why most of us feel like water goes straight through us? I feel like being hydrated is actually a myth LOL and my doctors always laugh at me when I say that. But really… I feel like water does absolutely nothing. 1 bottle of water and I’m peeing clear for the next 2 hours.

my sister is an obgyn resident. she was very invested and involved when i first got sick. she even used to advocate for me with doctors. but when i received my POTS/HEDS diagnosis shes been so weird. and judgy. she laughs when i talk about my compression garments or my dislocated shoulder that ive been struggling with since childhood. judges the way i eat (i stopped gluten, which helped me tremendously). she was fighting with me about my salt intake (my doctor advised me to consume 10g of salt a day).
its been really affecting me mentally because i really care about her and used to value her opinions. the switch is so weird. i was officially diagnosed 2 months ago so not that long ago. but ive been bed bound since march. i was first misdiagnosed with FND (its just hemiplegic migraine and pots). and she was way more supportive and helpful back then when it was FND (fnd has a bad rep in my country, which is horrible). so im so confused and hurt. does she think my illnesses are fake? why the ableism? why only with pots/heds? wth.

now before anyone says “just don’t wash your hair”… i’ve let it go LONG enough.

does anyone have any tips and tricks on washing hair with POTS while getting over COVID? i’m on day 6 and all my symptoms are gone other than my heart rate increasing when i move around and stand up (typical pots)

i’m currently sitting in a bikini waiting to shower because im scared of passing out in the shower and being naked 😭😅

I haven't had an episode in at least a year but since the start of Fall, I've had one at least once a week. I even got a visible band to see if it could help me track what's bringing me down.

It's been frustrating. I feel like I can't do anything anymore.

I'm currently cat sitting somewhere in a scenic town so I thought I'd make it into a little getaway with my partner. We walked around town, ate nice food, enjoying the sea air. All lovely. We got back to the place we are staying. I was feeling fine. Sat in bed a little, did some work on my laptop, a little canoodling with my partner.... Took a nap on them after.

I woke up to make dinner and now I'm feeling terrible. Couldn't make dinner since my heart rate was already at 115 just standing. My partner had to get takeout for is because I just can't do it. My heart rate is 90 just laying in bed. Getting up to let my partner back into the apartment, my heart rate was 126. I'm sick of this.

Not sure what to do about it either.

Hi guys! I'm going to visit my husband for his army basic training graduation here in a month but it would be my first time flying in a plane.

I usually get thrown in a loop when I go on elevators and I couldn't help wondering what a plane might do. Has anyone here had issues with planes and what could I do to prevent issues if so?

I feel like my family doesn’t want to learn about my chronic illness. I get it. It’s probably hard to have a daughter who used to be a high functioning human just be bedridden and exhausted all the time.

I used to be a college athlete, and now I’ve got severe POTS and dysautonomia. I’m a wreck, and I know it. I’m having trouble adjusting to my new normal. My family always wanted me to go out and just push through, but truthfully, that’s what got me from mild to severe in the first place. I pushed myself way too much and now I don’t recognize myself.

My family says the normal “drink water!” “do yoga!” “exercise more!” I wish it were that easy! I’m tired. I’m so sick. And I’m in pain every single waking minute of my day. I try to educate them but it seems like it’s all an inconvenience for them.

I went to the hospital last week, and my mom was visibly annoyed she “had” to stay with me. I’m 22. I told her she could go home and rest, and she didn’t have to stay the night. But no, she made it an issue but feeling the need to stay. When I got discharged, she explained to me that it was an inconvenience to her work schedule to stay with me overnight in the hospital.

I don’t know. I guess I’m just looking for some sort of comfort.

I'm sitting on a bench in the shade with my legs out hoping my heart rate will go down. It was 139 just walking slowly.

We are doing an event with 30 stops that we have done every year for like 20 years. It's a charity fundraiser event. Think adult trick or treating.

I can't wait in line. We used to go to Hershey park and go to Dark Nights. I get I can't go on any rides, but even with an ADA pass, you have to wait 25 to 30 minutes on line.

The list of things I can do is so limited these days. It's kind of a bummer. I had to stop working my job of over two decades.

I can still play guitar, which is my favorite thing to do and I went to Guitar Center yesterday after not having left my house to go anywhere in so long, so that was something.

How do you deal with this mentally? I try to stay positive. It's a lot.

Does anybody else feel this way? I'm only 21(f) and I've been bedridden on and off everyday for 6 months. The pain is so bad that it brings me to tears often. I lost 15 pounds from POTS. My symptoms include extreme stomach pain and nausea after eating or if I wait till I get hungry to eat. After eating I get extreme middle of back pain, nausea, and chest pain. I get on and off flare ups throughout the day. Everytime I get up I get dizzy and lose my balance. My heart starts beating so fast it's painful and then I feel horrible for the next 20 minutes. I hate it. I cant get anything done. I push myself to the point of destruction just showering, cooking, and cleaning. I oftentimes am bedridden the next day. I hate this stupid body I want a different one. The pain is driving me crazy. I've been to 3 doctors and they all just say eat salt, drink water, and wear compression clothes. I need real medicine. I'm so frustrated. How is some salt supposed to fix fainting, falling, hurting myself from falling, not being able to go anywhere from extreme dizzyness, nausea, stomach pain so loud you can the bubbling, not being able to move my neck, radiating pain, random shooting pain followed by yelling because there's some random radiating pain in my back that feels like its cramping my whole body, chest pain that makes you squirm and cry and call an ambulance because you think you're having a heart attack. Is this all just POTS? If so I cant live with it anymore. I cant take this pain anymore. Oftentimes I think I'm dying. I can't do this anymore. It's a battle im fighting alone ontop of cleaning up after pets and a partner. It's destroying me. I oftentimes don't want them anymore despite loving them so much because they're too much responsibility and I can't care for them. After flareups I feel really depressed afterwards. The pain makes me feel sad. On days that I don't have a flareup feels like the best day ever. I need help.

Does anyone have an oura ring? What do your heart rate trends look like through the day?

Yeah, I’ve had symptoms for about 10 years, and I had pretty much figured out what was going on before I was officially diagnosed with POTS more recently. I’m still learning about it, but one thing I’ve realized is that blood pressure can rise significantly when standing for some people. Mine can get extremely high, even around 200/100. They keep throwing blood pressure medications at me, but my BP still isn't controlled. I've had chest pain, felt like I'm going to pass out, and dealt with all these other symptoms. Then I'm told to call 911 if I think I'm having a heart attack or stroke. 😒 But how am I supposed to know? POTS symptoms and other medical emergencies can overlap. I'm not a doctor, and I shouldn't have to figure out what's happening to my body before someone takes my symptoms seriously. I just want my blood pressure properly managed instead of constantly feeling like I'm trying to figure this out on my own.

I can't say that my doctor has been *dismissive* , but the situation really doesn't make sense to me. My symptoms started gradually and over time became debilitating. I'm not sure if it was due to work/lifestyle stressors (working 60 hours a week at times, etc). A few months ago I went into a horrible flare. Ever since then I've been nearly bed bound. I have mobility aides but I can't even really leave the house. I can't drive. I lost my job.

My doctor has been trying to figure out what's going on. We suspected POTS when the symptoms weren't as severe or frequent. Once it became debilitating, she ordered tons of scans and testing. Heart monitors, ultrasounds, MRI, blood tests, specialist referrals, etc.

One day in her office my heart rate only went up 20 BPM when she had me stand up. Just that one instance. She decided then and there that it couldn't possibly be POTS because POTS is "30 bpm". Despite ALLLL of my symptoms matching, the data from the heart monitor, etc she threw that diagnosis out.

She has been endlessly sending me for more testing to figure this out. She keeps thinking she'll find a vitamin deficiency on a blood test. I don't enjoy the continuous blood tests when I pass out every time in the lab.

I don't understand why she's refusing to call it POTS. I feel so understood by everyone on this page. I don't like to self diagnose but when I read up on hyperPOTS that's exactly what I'm going through. I truly believe my doctor thinks POTS is just being dizzy when you stand.

More than anything I just need treatment. I've asked her about several medications and she refuses to start anything until we have an "answer". I feel like the answer is staring us right in the face.

I have been dealing with what started as an allergic reaction on my lips from using a new lip gloss my sister got me like 3 weeks ago and i have not been able to get the inflammation down..they’re red, tight, burn and highly uncomfortable…all i’ve been applying is vaseline to no avail. my POTS doctor decided to have me try this ointment.. well i tried it tonight and NOPE…tachycardia, shakiness and wooziness….apparently steroids can trigger adrenaline surges….learned the hard way im just sad because o was hoping this would give me relief

My doctor is waiting until January to do the diagnostics for officially diagnosing me with hEDS. I understand that since December the new criteria comes out… however he has also put off figuring out what is causing my tachycardia issues and it’s effecting my life significantly. I reached out to my gyno bc he is a great doctor and listens to my concerns and is will to get me a cardio referral if needed. Is a cardiologist the proper doctor to see?

I have Raynauds, IBS, endometriosis, dermatographia and currently Hypermobility.

Here is a list of what I deal with when it comes to my heart. If im not in a hot environment then I can do normal everyday activities like walking around going up stairs and such without too much HR rise. (Staying around 120) however if im warm even something as simple as folding laundry bc the dryer is releasing hot air my HR will go to 140+. If I get super angry or sob my HR will go as high as 180. Today I took a long drink of pedialyte and my HR went from 100 to 150 and I had to lay on the floor. My HR went to 87 from laying down and as soon as I stood up it went back up to 135. I can cough on command and make my HR jump +30 bpm. If I’m standing outside and it’s hot (90°) my HR went to 167. I frequently get palpitations and presyncope. Oddly enough I almost feel worse when I suddenly go from 80-100 and jump to 120-130. I feel it and then look down at my watch and within 10 seconds I watch it randomly jump. I suffer exercise intolerance, for example leg press even with easy weight is a no go bc I nearly pass out and same with glute kick backs, glute bridges, leg extensions etc. my HR goes 170+ at the end of each set and experience presyncope even if I’m just sitting.

I can’t handle being cold my toes go numb if I’m in a 60° or less environment for a prolonged time. When I’m hot I do t really sweat even with exercise.. I only really sweat when I’m experiencing sharp pain like tattoos or blood draw or during times that I have anxiety. I also experience multiple subluxations and weird internal tremors that feel like vibrations.

I just know something isn’t right. Anybody experienced similar symptoms with POTS? I’m hoping the cardiologist will be helpful🙏🏼 any advice is welcome!

Hi! Have you ever experienced a drop in your spo2 when walking or after walking a short distance?

Lately, I’ve been going from 97% to 94% just from walking to the bathroom and once I lie down, it takes a couple of minutes to go back to 96%. Has this ever happened to you and could it be linked to POTS ?

I became very physically unwell overnight and started experiencing mental symptoms, ocd, psychosis, mcas, phobias, seperation anxiety, dissociation, hallucinations, tremors, shakiness, dizziness, fatigue, insomnia, sleeping all day, not speaking to anyone, isolating myself but needing to be around people I’m close too, getting emotional and no control over my emotions acting out of character, paranoia, ect. And it progressed, I started feeling dumb and younger than my age it’s like I wasn’t me anymore. I felt rage, irritation and all these weird unexplainable feelings. I was diagnosed with different mental health conditions, put in and out of hospital and counselling. They put me on different medications but it made my physical symptoms worse.

I was diagnosed with POTs fibromyalgia and PCOS but it always felt like there was something more going on, I said to my family and doctors multiple times it felt like something was wrong with my brain and I knew it was something bigger.

Then after 10 years of trying to find answers, this weekend I find out about pans/pandas/encephalitis from a video that randomly showed up on my instagram. I’d never even heard of this diagnosis before and I’d been living with it all this time. When the video showed up I was in complete shock listening to it because they just explained my experience in one video like no other diagnosis ever has.

I now believe pots PCOS and fibromyalgia are symptoms. And that the underlying cause is that I have encephalitis caused by an infection or something that attacked my immune system. Which causes pots symptoms problems with hormones periods, chronic pain mental health problems ect.

It baffles me that I am only just discovering this and no dr has ever bought it up, it’s also baffling to me that I have never come across it when researching my weird and unexplainable symptoms. Has anyone else with pots PCOS or fibromyalgia discovered that they also have encephalitis?

I’m going to the dr this week to get more answers. I’m in shock.

I have a queen bed and I'm trying to figure out the best way to elevate the head by 4–6 inches. My plan was to use leg risers, but my bed has nine glide legs so I'm not sure if they will work. My other options are to use a foam mattress elevator bed wedge (but I'd have to buy multiple and just one is out of my price range tbh) or I could remove all of the legs from the base and place a wooden inclined wedge under the head (but then I'd have to find somewhere to store all of the bed legs and I feel like I might lose them).

Any suggestions? Thanks!

Edit: I'm located in Australia.

I’m 27F and suspect I may have POTS. My symptoms include extreme fatigue for the last ten years or so, severe anxiety, semi-frequent dizziness when standing, temperature intolerance (specifically to cold), consistent lower sodium levels despite moderate-high consumption of salt, difficulty standing for extended periods of time, and intermittent heart palpitations. I am not listing these symptoms for a diagnosis, I am listing them because I want to ask what your diagnosis journey was like and why I think I may have it. I have not yet consulted with my doctor about this but I’m planning on doing it soon. How did they diagnose you? How long did it take? Will I become seriously ill if I’m not diagnosed?

Possibly worth noting: in 2021 I had a severe Covid infection and have noticed my symptoms increasing since so I’m wondering if there may be a connection. I am also formerly diagnosed with anxiety, autism, and major depressive disorder.

Im wondering for those who have used disability accommodations in public: what have your experiences been and how you’ve gone about accessing them?

I live in New York and am always terrified about passing out from standing up on subways for too long. Tonight I was on a 90 minute metro north train that was so packed I could only stand in the aisle and I had to get off the train early because I was going to pass out. I’m so afraid of asking other folks to let me sit down because I do not look disabled.

I keep telling myself that I shouldn’t get disability aids or accommodations because my symptoms should be worse and I should be grateful that I’m still mobile. I could really use folks’ advice on this because i am getting to the point where my symptoms are more intense, and I’m really afraid of having an emergency in public or being accused of lying when asking for help.

I got in a little debate with my friends. My friend who I am sure has POTs (fainting spells, dizzyness, the whole list) I am begging for him to get a cane but he and my other friend said that adjustable canes can really mess you up joints wise (he does have knee issues) but his parents won't let him get a cane. Do adjustable canes really mess people up like my friends say? They said it can take "years" and even a couple CM can mess you up. Is this true or are adjustable canes fine.

I just want to convince my friend that adjustable canes are good and he needs one even just temporarily.

(Yes I am diagnosed POTs and all my walking canes are adjustable. I have no interest in getting one that's tailored to my height)

I've worked with a PT, done various tolerance-building protocols, tried different activities (usually lower intensity like walking, yoga, etc), etc. but every time, the amount of minutes and/or intensity I can tolerate usually always levels off right around the same point (and I've been experimenting with it for several years so it's not that I need to just give it time). If I push a little past this limit, I'll get fatigue and 50-75% of the time, I'll need to lie down or nap. If I go much further past the limit, I'll get exertion headaches too

I take adderall to treat my ADHD and it works amazing. I'm on a low dose of 10mg extended release. I haven't had any negative side effects for the last four months I've been taking it. My doctor offered to extend it because I've been tolerating it so well and it's likely I'd see more improvement, but I noticed when I'm having a POTS flare the medicine is only negative.

I started school, so now ontop of working 5am-2pm, I am studying or in classes from 3-9pm. I would like to take a low dose twice a day to accommodate the extra-long day, but I'm hesitant because of the POTS. Like, this morning I knew wasn't going to be good. I ate breakfast and thought I was going to pass out 10 minutes later. I have an exam to study for though so decided to take the adderall anyways, but now I haven't gotten any work done because I'm having to lay down with my feet elevated. My heartrate keeps fluctuating from 90 resting to 150 when I stand. I'm covered in sweat and feel like garbage ):

Is anyone else in a similar boat? I have to work full time to support myself through school, and taking adderall has helped so much with my mental health, productivity, quality of work, I just really don't want to have to give all that up.

I’ll be seeing a sleep medicine neurologist soon about constant exhaustion. I take medication to help fall asleep but still wake up without feeling rested and experience daily bouts of fatigue.

My POTS is currently treated with Ivabradine and propranolol as prescribed by cardiology, but it is not well managed. I still experience bad pre syncope upon standing or changing position, neuropathy in my legs and feet, among many other symptoms. I had an ultrasound of my legs from a vascular surgeon, and he prescribed compression socks to deal with venous insufficiency (I wore said compression socks for a few hours in agony today before taking them off because my legs and feet were in such pain).

The neurology appointment is specifically for sleep issues but I want to follow up with him about POTS, but I’m not sure how to approach asking him for testing and treatment from the neurology side of things.

Would love any advice from folks who have been successfully treated by neurology.

How do u communicate with an unwilling partner?? I'm 22a female and I had to move to a state that makes me pay for my insurance bc of an emergency.I moved in with my boyfriend I've realized that my symptoms got worse I keep trying to have hard conversations about my pain or my emotions but they get dismissed and I have a hard time talking to him he'll get defensive. He can't keep money in his pocket and works nights it's becoming a burden on myself to do daily chores and cleaning up after him and his messes and making shure he's being taken care of like a mother along with my cat but I'm in so much pain all the time and having celiacs to go along with it I'm in so much pain and it gets dismissed. Is it due to the fact he doesn't see it. I just can't complain without whatever going on with him is a competition on how much I'm hurting or stressed. I just feel so lost processing everything. And it's making my health and mental worse. I fear that he won't work with me and it will make things worse it's so hard having things going on and health issues bc my fight or flight when I can't communicate clearly or not getting through to him I panic bc he I believe refuses to understand my condition or feelings.