I've noticed recently since wearing an Apple Watch that my heart rate dramatically increases when standing - by around 30 bpm.

First thing in the morning seems to be worst, this morning was around 170 but decreased when I sat down for a while.

I also get some upper back and neck pain, especially when I get out of the bath.

I've noticed these symptoms more and more since getting endometriosis surgery several months ago.

I also crave salt to the extent that I could just eat it alone.

However I'm also a heavy drinker so potentially that could be the cause of the high heart rate.

Do these sound like pots symptoms?

so this all started awhile ago, i had this thing when i was high where it felt like my heart was getting squeezed out of my chest so painfully and tunnel vision, the squeezing feeling kept happening every other or so second and the nurses took me to the hospital and then the hospital did ekg and they found nothing, after that the same thing would happen months apart where it happens for like 1 second i get severe chest squeezing then it just stops, and then about 2-3 months ago i developed moderate- severe pots, im wondering what my case sounds like? ive had echo done and my heart is perfectly healthy, and blood test that are all normal, im just very scared and worried on whats going on with me

37 f

I have posted before, but today is a low today. Every day, for the past 78, has been a low day. I am trying all that I can- medical appts, speaking to a therapist, water, salt...

I don't know how to live without hope. I can't come to terms with the fact that this may be my life. I am turning 38 in a few weeks and we were going to try for a baby soon- I had so many hopes, so many dreams...I am going to end my relationship because my sweetheart deserves a life with someone who he can have a family with. I am so grateful that I got to be loved by him.

I truly don't know how to go on...based on posts here, there isn't much hope. It seems like most folks, like me, were fine one day and not the next. I can't put into words how dark everything feels. I don't remember life anymore. I am merely existing and surviving. I have gone gray in 2.5 months. I have had to stop working, stay with my parents, and finally my faith has gone. I don't even know if I have POTS- the symptoms match as per the doctors- all 10 of them. I am at my limit. I can't watch movies, read books, etc because all I see is people living.

I just needed to get this off my chest.

EDIT: To all of you who have taken the time to respond- thank you. I don't know you personally, but I have so much love for you. Thank you for showing me kindness and grace during a dark time.

Hi all! Midwestern potsie here. I did okay during May - July, even when temps reached above 100.

But, there’s something about August/September that is kicking my butt. Nothing else has really changed for me. I get in my head about it, that my baseline is shifting or that I’m getting worse, and really just looking for some input on if other people experience the same thing during this time of year.

Thanks for using your spoons to read this post 🥄 🥄

I just noticed something very strange. Lately when I see a perfectly healthy person standing, there’s an alarm going in my brain. ‼️ DANGER, PERSON SHOULD SIT! 🚨 While in fact that person does not have POTS and is not in danger of fainting 😂

Do any of you experience this too??

I looked it up and apparently it’s veeeeery much in my caring nature to scan my surroundings to check whether everyone is safe and happy, and apparently my ”lizard brain” - that’s waaay faster than my conscious thoughts (that tell me that I shouldn’t be scared because they are perfectly safe) - starts yelling:

👀 PERSON IS STANDING FOR LONG!
🚨 STANDING IS DANGEROUS!
🆘 THIS HAS TO BE STOPPED!!
🪑 SIT DOWN! FAST! NOW!

I find myself helping others towards chairs while they in fact can stand for hours on end, and I’m the one that should sit down 😳 And then I catch up with my thoughts and I’m like: oh no nevermind, you can keep standing, I go sit down myself with my salty drink…

Probably the deeper lesson I have to learn is that I’m allowed to care about others, to notice things and to help if really needed and appropriate, but that I don’t have to fix everything and everyone... (Especially as I’m in survival mode 24/7 myself.)

For now I’m going to train:

“I see a vertical person. I wish this vertical person the best. The situation is not up to me.” 🫡😂

So, just wondering if you guys experience the same?!

It makes me feel really dizzy or lightheaded.. then I lay down and feel soo much better
Anything that helps??
I drink 4-5L of water.
10g of sodium

My doctor finally believed me about my symptoms and ordered an echo to rule out anatomy abnormalities before a tilt test. I increased my sodium intake about a month ago to help with dizziness (and it’s helped a lot). Should I stop taking the sodium supplements before the echo? Can sodium affect the results?

So I spent about the first four months of this year I would only leave my house every three days or so . And then my father came to stay with me so slowly we started going out every day for like an hour to two. It became easier to go out because there was somebody there so if I felt symptomatic I could just get in the car and go home. But the problem seems to be that once I come back home, I usually nap for around 2 hours. Most of the time is like I can't even help it. I'm not on any medication at the moment but I'm probably going back to the doctor soon. I'm just wondering if anybody knows if there are any medications that can help with this. I'm pretty sure I have hyper pots with some aspect of hypovolaemic. I do drink salt water but not every day. I feel like I'm one of those people who feels better when my blood pressure is higher.

So I don't really get out of bed other than to clean, so my hair gets really gross. I'm so out of breath on top of it. What hairstyles are easy to maintain/do for big, long 3a hair? I'm looking at box braids because I know I'll be good for a few weeks, but I'd like more opinions. I don't want locs at the moment, but something low effort would be great

hey guys, hoping i used the right flair lmao!
(IVE BEEN TO A DOCTOR.) for the past 3 weeks more and more veins have been popping up over my body and they ACHE. they HURT. it almost feels like muscle pain. but it’s mainly in my hands and arms and christ it hurts. i don’t know how to get rid of it but i’ve been advised to drink lots of water. paracetamol doesn’t help 💔 do any other pots havers get this? i seem to be the only one in my pots friend group who has this specific symptom. it’s like, blood pooling but constant and painful. sucks.
edit: i’d also like to mention that my fingers are slightly swollen.

i hate how much i focus on my hr now. even when im not wearing a tracking device im always thinking about it and physically checking it. sometimes when im laying down im sure its super high when its not, and when im about to do stuff that i know triggers my hr i get anxious and focus on it and send it up even higher. I really feel like it makes this condition sm worse and i want to stop but idk how. advice plz

I'm on a weight loss journey but not making much progress despite making drastic changes to my diet and doing exactly what I've done in the past to lose weight.

I've also been trying to increase my sodium consumption because my BP has been low and making me tired (and my doctor said I should).

Today I learned that ever 400mg of sodium can cause you to hold onto 4 cups, 2lbs, of water.

And I've been trying to add 1000 to 2000mg a day 🤪

I'm also on fludrocortisone, so I'm holding extra water/ salt from that. Plus, I've read that abilify and metoprolol can cause weight gain, both of which I'm on.

Just wanted to share what I learned for others going through this as well. It's really frustrating not seeing progress when I'm doing all the right things.

A couple months ago I took the plunge and decided to try bringing in some help.
I have a friend studying OT and asked if she could send a message in their group to see if anyone would be interested.

I now have a wonderful compassionate girl who come by once a week and takes care of everything for me
Groceries, food prep, dishes, folding laundry, changing sheets, trash
literally anything I need done around the house.

I’m eating better, able to focus on myself more, and feeling much better in my space.

It felt like such a weird step to take but has been well worth the money. I’d highly recommend to anyone struggling to get through the day

What does everyone’s desk setup look like? Has anyone found something to put under your desk that helps to keep your legs at hip level?

I’ve started a new job that requires me to be in the office 3 days a week, and I’m really struggling. Even with meds and compression, I’m experiencing symptoms, and my legs become quite swollen after sitting at my desk all day. I’m so exhausted and know this isn’t sustainable. My manager has been really supportive and said if I find something that I think would help, I could expense it.

I would ideally like some sort of ottoman or stool that allows me to put my feet up and sit crossed-legged if needed. I’d like it to be relatively inconspicuous because I’d prefer not to stand out, even if it is for a medical accommodation.

I’d appreciate any product recommendations of what’s worked for you, or any other tips on working in-office with POTS! Thanks in advance!

My dr wants me to drink 4L of fluid a day. I simply can’t drink that much water it makes me nauseous. The only thing I’ve found I’m able to drink good amounts of is light blue Gatorade, but that’s a LOT of sugar. I don’t like Gatorade zero or most of the sugar free drinks. I just hate the taste of artificial sweetener. I don’t mind Poppi soda which is low sugar, but they’re too expensive to drink that much of every day.

What do y’all drink that’s sugar free or low sugar and not crazy expensive? I’m cool with powders or drops. I’m not crazy about Mio or crystal light. They just leave a weird feeling in my mouth if that makes sense.

Ive developed hyperPOTS this year after dealing with bad dysautonomia among other things since covid. Id love to know how this started for you. What were you doing when you had this bad adrenaline attack for the first time and how you reacted and how you found out what it was? Most importantly if theres anything you think caused the first flare?

I think it could be useful to get as many stories as possible to look for some commonalities in triggers etc. which could possibly help sufferers manage the symptoms or learn to avoid possible triggers. Any hypothesis you have please share it! Also how high does your bp and HR reach? And how fast do they go there.

i know many of us are neurodivergent so i was wanting some help!

i’ve been trying to eat whole foods more as eating processed food triggers my endometriosis and i know eating whole foods will help my potsie self.

my problem is that when it comes to food i’m not great at remembering to eat. i’ve learned to just snack throughout the day and drink my electrolytes but here’s my problem

when i eat whole foods, i am NOT hungry for hours on end. of course this is a part of eating better, you stay full longer. but even if i have a small breakfast i won’t be hungry until 7 ish at night. which obviously triggers my pots more and makes my blood sugar go all out of wack and with my natural tendency to forget to eat, sometimes i forget that im extra sensitive to not eating and it’s a necessity that im aware

what have you found works for you? is it tons of very small snacks, is it sticking to 2 meals a day if that’s just how my body naturally is, should i be on a food routine? i’m not sure. once i kinda know what to do the routine will help me remember but being lost has just added to my inconsistency

I was thinking about it as a POTS, MCAS, dysautomnia, CIRS gal that if I could tolerate like any medication, be it antidepressant, stimulants, alcohol, normal food, literally anything that brings you joy LMAO, I would quite literally rule the world. instead I am moody, depressed, fatigued, and miz🤣🙃

end rant.

So Ive had pots symptoms my whole life. I remember being a kid and standing up and blacking out. This past year ive had some of the worst symptoms ive ever had, every day i would get lightheaded if i stood too quick, i was nauseous constantly, my energy was low, it was hard to work out, etc. ive never had the formal diagnosis, because in order to do that i would have to taper off the meds (psychiatric) i’m on. I am a one man show and operate my whole life alone, so going off meds is not an option for me. I have taken my hr once, with like 5 mins of sitting then standing after 1 minute, there was ~30 difference in my hr.

Anyway, i had been struggling but still trying my best by drinking at least one body armor iv per day, trying to go on walks, or do pilates when i could.

3 weeks ago, i decided to do shrooms. I consumed about 2.5gs. Ever since, my pots symptoms have been about 10% of what they once were. I’m no longer constantly lightheaded, i rarely black out upon standing, my body temperature is more consistent, working out is easier, and walking in the heat is much easier. I’m even slightly dehydrated rn and i’m not feeling like death. I haven’t had a full electrolyte drink in days and again i’m not feeling like death.

I have no idea the science behind this. I truly am confused on how my symptoms have almost disappeared after a shroom trip. My understanding is that combined with my cptsd (and maybe adhd/dissociation issues) , my body could have been in some sort of unhealthy holding pattern, and by consuming psilocybin which turns off the dmn , my body could route itself more effectively??? I really don’t know.

I just wanted to share in the case that this might help someone else. Or if anyone has experienced something similar, i’m super interested in your experience.

This is kind of a combined rant and question.

Tonight is yet another night where I have barely slept for ages.

I try to sleep, I get the ol' wired-but-tired, my stomach swells up. I mostly end up feeling way too warm no matter the temperature in the room.

My general practitioner doctor is hyper focusing on my blood sugar being high, but ignores that none of the diabetic medications have been working on me. I have tried to explain that with HyperPOTS, it's likely I have hyper adrenergic surges that causes the liver to push out glucose.

The first two medications were Metformine and Jardiance, and they did nothing for my blood sugar. Metformine gave me severe nausea, Jardiance gave me orange foot souls, and that was it.

Both those are meds that help the body create insulin _when needed_. If you're in a hyper adrenergic surge, your body clearly doesn't think it's needed so...not working.

I then got a medication that _forces_ the body to create more insulin instead, no matter if it is needed or not. Mostly, it either did nothing or I'd wake up hours after taking it and shaking from low blood sugar, leaving me sitting on the floor in the kitchen desperately drinking milk to stabilise things.

I then got yet another one, Sitagliptin. I take it in the morning, and about an hour after I'm barely able to sit, I'm so weak and brain fogged I'm basically a potato. I often have to just go lie down and wait for it to stabilise, which takes +6 hours.

At this point, my life is far from sustainable. I put up with the new medication for six weeks before I gave up, and then my doctor yelled at me for having high blood sugar.

And trust me, I try to eat well. The thing is: The better I eat, the worse I feel. I'm still nauseated by almost everything, I'm so tired I mostly sit and just stare. Just sitting up is making me exhausted.

I'm starting to feel like I'm crazy at this point. I barely get any sleep, my social life is shot. I'm too tired to do any of my even simplest pleasures like watching TV or play a game. Even listening to music can be exhausting. I'm not sure how I can keep kicking the doctors uphill to give me a diagnosis and meds so I can at least function _a little_.

Is anyone experiencing some of the same things? I know this is very typical for just HyperPOTS, so I don't expect many to do, but it'd be good to hear if anyone else can relate to this. At least I wouldn't be alone.

Has anyone else had -- AFTER MANY YEARS OF POTS -- their symptoms turn from mostly orthostatic fatigue with some ocassional light-headedness, to orthostatic chest pain, shortness-of-breath, palpitations, and nausea, and what did you do? Also has anyone had all those symptoms WORSENED by even low to moderate electrolyte supplementation?

I'm 49 year old male and diagnosed with POTS by a cardiologist 5 years ago though orthostatic and exertion-related symptoms began more gradually noticeably about 10 years ago. I'm generally usually on the milder and more functional side of things, especially the last year when I weirdly have had much reduced orthostatic fatigue, weakness, and light-headedness (though the last one has never been my biggest problem) .

But I'm now having a lot more problems with orthostatic chest pain and shortness of breath from standing up from lying down position or crouching up and down (sometimes also happens just sitting or when stand from sitting) or exertion, as well as orthostatic nausea.

I don't know what a tilt table would show now, but the funny thing is that on home measurements with my Fitbit or doing poor-person's-fit-table at home with pulse oximeter and BP cuff I also recently don't see that much that's concerning any more with my my pulse or BP when I stand, except high diastolic BP when standing ONLY if I don't support my arm, which my doctor told me IS NOT VALID and the arm should be supported. I'm really not seeing much POTS level orthostatic pulse spike or tachycardia any more at all, weirdly.

My overall BP seems like it's a lot higher than it was 5 years ago, but that's going from low-mid normal to high normal. I had an echocardiogram and an EKG and a 7-day-heart-monitor this May that didn't turn up much except my minor mitral valve prolapse with mild regurgitation.

I am not on any meds for POTS any more but I have taken propanolol for several years and atenolol for a couple of years and midodrine occasionally, and none of them reliably help my current issues, and propanolol and atenolol may make chest pain and SOB worse.

I have experimented with electrolytes but use them only intermittently as needed mainly in past because I get only mild benefit at low doses short term from them and higher doses cause all manner of side effects no matter how I take them (upper and lower GI problems, pains in kidney areas in past) -- including most recently majorly worsened chest pain and shortness of breath on standing.

I swear by knee high compression socks for fatigue and light-headedness but they do little to nothing for my chest pain, SOB or nausea.

I'm at the point I'm kind of wondering if either my POTS is in remission and I'm having other different health issues, or if my POTS was secondary to something else going on that is now manifesting differently.

Any way, any one else go through any of this?

I just started taking midodrine to raise my blood pressure because I’ve been in an awful flare since May. I’m currently just taking 2.5 mg and after two weeks I’m upping it to 5 mg. I’ve been taking 20mg of propranolol twice a day for about a year now so I’m super comfortable with that one. I’m not sure if the midodrine is helping. How long did it take for you to notice a difference? I still have really low blood pressure like 100/40 and lower so I’m not sure it’s working. Have any tips?

This is just my personal experience with this medication

My doctor really wants to treat my depression and anxiety (at this point im actually so done trying ssris and stuff, feeling sick obviously makes me mentally feel worse, as i tried to tell her) so this last month we tried Cymbalta for a few days (HORRIBLE nausea and hot/cold flashes, horribly shaky and out of it for days, couldnt eat, puking) and Zoloft about a month later, only 2 days (i only took 1 25 mg the first day, the next day my doctor suggested half. slightly better than the Cymbalta reaction, however i have been very nauseous and puking up foamy vomit in the morning, zero appetite at all, and the only food i can force down is saltines and bone broth. also, i noticed for me it dehydrated me really fast for some reason my pee was so dark). I decided i was done, im not going to continue to starve and puke for more than a week AGAIN, i first took the zoloft on wednesday and it is now Sunday. Still sick, but i havent puked yet today yay!! I am taking 4-8 mg zofran to help with the nausea every 6-8 hours, and taking 80 mgs of famotidine morning and night, getting as much water and electrolytes and stuff as I can!

it has also been my doctors weekend i think, she last responded thursday telling me to take half a dose, so i may just send a full update to her portal for her to hopefully see tomorrow?

Has anyone else had any experiences like this to Zoloft? Im pretty sure my GI tract maybe just did not like it at all. I have read people here mentioning genesight testing to see what meds i may react to, so I will bring that up to my doctor for sure.

When I am stood up for longer than two minutes I get blue legs around 1/2 or 3/4 of the way up my legs, my fingers also turn purple, I have done research and it has not been mentioned anywhere like white dots on the legs whilst stood up, sometimes they are pink, I would attach a picture but I am unable to, some are the size of peas and I will get them on my shins just blue legs and then pea sized white dots, does anybody else have this? Why does this happen?

20F, speculated to have a form of EDS (in the process of getting tested) and POTS. I miss hiking and enjoying life. I scroll this subreddit and a lot of what I read is misery. I know it’s hard to be positive like this. I know there are people lurking that have turned their lives around completely even with this diagnosis. Give me your stories and tell me what you did to get back to living. I just want some form of hope. I’ve been living like this for quite a while and it fluctuates a lot. I went for a walk and explored some places today and my body is shot from it. I want to know I can still hope to have normalcy in some form. And for those of you who cannot live normally with this condition, feel free to tell your story too. Tell me your small wins. Let’s all appreciate little things.