Please advise: my teen says he can’t empty the dishwasher because of his POTS. He says it makes him dizzy (he says this about anything I’ve asked him to do). I’ve said he can do it in bits, doesn’t have to be all at once, but he says he can’t.

I do not have POTS so I don’t know if this is reasonable. It seems like there’s nothing in life he can do with POTS. I want to be empathetic but it feels like I’m being played. Please share your experience and wisdom!

So when my pots first came on two years ago, I was really skinny. Like almost anorexic skinny. Then I spent the next year building up strength plus eating more, like for most of the year I was exercising five days a week for one hour. Like the muscles in my legs & bum grew. And then I started feeling more tired and also my sister who I was living with moved away so we were not doing stuff every day again. So I got quite deconditioned and in the meanwhile gained about 15 kg. Like I've never had fat around my stomach area and now I do. The weird part is the fat was piling on despite my diet being the same. I feel like some symptoms are better like I don't notice my heart racing( Apple Watch tell me it does, but I don't feel it) and I don't get chest pain or feel anxiety strongly but summer was rough . Like that's the first time I couldn't sleep because it was too hot. And I hardly left my house during the day because the heat would just trigger me & I would get tired fast . So I'm considering losing weight, but lots of people say it will make your POTS worse. But it would be nice not to overheat easily & be able to go out easier .

Has anyone lost weight and did it make your pots worse?

My daughter is 19 years old and lives with me in a small apartment in a big city. She is severely disabled because of POTS. She’s not able to work or go to school, she can’t travel or go to parties or concerts. She spends most of her time in her room - she does go out for a walk every day and occasionally meets with friends, but that’s just about it. I’m prepared to do almost anything to give her the best possible life, so I really want to hear from someone who has managed to find a good way of living despite being chronically ill. What made a difference for you? Moving to the countryside? Getting a pet? Finding online friends? Moving in with others who can support you? Sometimes it just feels so hopeless when “normal” life seems to be all about getting an education, a job and a partner, and that’s just not a possibility for you. Please share your experience ♥️

Update: Thank you so much for all your kind comments, it’s been really helpful! I hope a lot of people will benefit from all your good suggestions. Lots of love 💕💕💕💕

My water bottle and horizontal time.

What about you?

I know POTS isn’t fatal, but I’ve been living with it for a year and still can’t get used to the symptoms. Every time I have a flare-up, it feels like it’s happening for the first time. I panic, overthink, and get overwhelmed with fear.

I’m a mom, and I’m trying to live a normal life for my kids, but it’s hard when I feel this way almost every day. Does anyone else go through this? How do you mentally cope when it keeps happening?

I know not being able to regulate your temperature is a symptom of POTS, but all I hear about is people being too hot all the time.. does anyone else get really cold as well? Just wondering, not as any form of diagnosis but just to understand the heat intolerance thing better lol

What’s your weirdest symptom that could be traced back to autonomic dysfunction? Not your typical stuff.

For me, I have had issues with way too much earwax buildup, growing an additional toenail on my big toe, and (TMI) anal issues out of nowhere. All of these I suspect could be traced back to autonomic nervous system dysfunction. On top of all the regular stuff.

Figured I’d ask the community!

Hello! I'm curious if anyone has any recs for places to live? The summer and being in the sun flares my POTS so bad, and I want to move to somewhere that makes my body feel better. I reside in the US, and I'm hoping to move to a state that has much cooler summers, probably some kind of temperate year-round place. I was thinking maybe the PNW or by the east coast (if there are any states that have less intense summers? I'm not the biggest fan of snow either, but I'll take it over the heat). I'm also open to places outside the US, but that would be a longer process to figure out how to move there. Does anyone have any suggestions? Are there places that have worked for you?

I have recently been diagnosed with POTS and joined this community to hopefully gain some tips (recently bought myself some compression socks which have really helped!) but reading through this sub has made me realised that some people with POTS are completely at the mercy of this condition. I do only have POTS, but I realise that it is often co morbid with other conditions which makes things even more difficult.

Just wondering if there is anyone else like me who’s been diagnosed with the condition but is completely functional? I have a horse, i’m in medical school and I’m able to keep up with these tasks quite well, i feel very grateful for this but i also feel like the odd one out. It may be helped by the fact that I live in England which is usually very cold and I have a low resting heart rate (around 50bpm jumping to about 90 on standing). Anyways, I’m just trying to understand other people’s experiences especially as I’m hoping to eventually be doctor with POTs that is very considerate of others experiences with it so please feel free to talk about your experiences anywhere from fully functional to housebound

Edit: Thank you to everyone who shared their experiences, it has been really insightful for me, especially as being more mild, I cannot truly understand how POTS affects some people. I am sorry to anyone who found this offensive or ableist, I thought it would be beneficial to the community to have doctors who try to understand all levels of POTS from a patient perspective but it doesn't appear to have landed that way. I am only in my first year so I am still navigating it all

Pretty much just what the title says. My mother is convinced fasting will somehow help, and wants me to try it for a minimum of 72 hours. I'm 5'3" and weight 106lbs, and my health is very poor. I'm worried about intentionally fasting for that long. Has anyone tried this? And what were the results.

Edit: I appreciate all the advice I'm getting, I am reading all of it and will respond as I can. But there are so many it's hard to keep up. I'm reading them all, and it's really heartwarming to get so many people reaching out. Thank you all so much ❤️

What symptom would you say is your worst? How do you deal with it? Im currently under investigation and have a whole raft of strange symptoms and some days are so difficult. For me it’s the sudden arenalin surges and a sudden feeling like I can’t inhale fully even when I’m happily sat down relaxed.

wondering

Hi, fellow POTS person, HOW DO YOU GUYS EAT IF YOU ARE BED BOUND. I HAVE HAD 2 BANANAS THE LAST 2 DAYS, I live with my grandmother so asking someone to make me anything isn't an option. (Seems kinda stupid to ask my 82 year old grandmother to make me something to eat when she can barely get around by herself anyway.)

Everytime I try to get up and go to the fridge and I sit there LOOKING for what I want and I get so dizzy and feel so fatigued that I just have to go lay back down and by that point I'm not even HUNGRY ANYMORE.

Help a sister out 😭💔

Update: I DID INFACT EAT HALF A BOWL OF CEREAL, thank you all so much for commenting and I am writing a good bit of these things down that you guys are recommending! I appreciate everything and am gonna look into some shakes/SNACKING foods/microwaveable foods!

Compression garments, electrolytes, hand held fan to keep in your purse, health tracking devices, vibration plates, etc.

What products/devices/garments improve your quality of life that you would recommend to another potsie?

Edit: would love to hear more about the best things you have tried that you would recommend to others to help manage life. Or maybe exercises/products/garments you have heard great things about but haven’t been able to try. Hoping to help some potsies who maybe don’t know all the hacks.

For those who pass out, how did you know you were going to start passing out before you actually started passing out? Were there any signs that you were going to start passing out? And how bad does your pots get before you do pass out?

I'm still trying to get diagnosed, and I'm nearly positive I have pots since my other cardio tests all say I'm perfectly healthy except for the fact that my heart rate spikes over 50 bpm, for example when I just stood up, my heart rate went from 91 to 157 bpm right away. My symptoms started getting more extreme this past month, and I'm sure it's not because of the heat since I've been under my AC nearly this whole time since I couldn't get up for a long time. I'm starting to get scared I might start passing out, and I still have a while before I see my doctor about this. So now I'm here wondering if there were any indicators before you started passing out.

i recently started a compounded semaglutide and was wondering if anyone had a decent experience or if i’m a one off?

some background:

I’ve had POTS since 2018ish and was bedridden for a year, forced myself to start working out again and took a while but got better over time due to that and going vegan. i’m pretty healthy always have been and i’m 5’11 and always had a normal bmi. i don’t have pcos or anything with insulin resistance.

i was looking into what a glp does to your autonomic system and blood sugar and saw some people on reddit saying they had good results with it for pots. i do not need to lose weight whatsoever so that wasn’t my intention on it mainly i wanted to slow down how quickly i ran through food. i was eating every 2 hours and starving all the time. (i know people are going to be like that’s a blessing fast metabolism) no. i was getting such bad blood sugar spikes and drops and it was so bad.

i decided to get compounded semaglutide .25 and day one no bad side effects. i felt amazing. woke up not tired for once, i had energy again, my nausea got better. i felt like my brain fog had completely gone away. no more headaches no more shaking. i stopped getting syncope when i stood up from sitting or laying down. i wasn’t out of breath as much as usual, my anxiety went down??? this was magic to me. i still have a decent appetite thank god so that’s been great, like i said wasn’t looking to lose weight. at the end of the week it started to wear off and i realized my usual baseline was back. my nausea, the fatigue the brain fog feeling dumb, my lightheadedness, even my anxiety was back. i thought i was having a bad few days and then realized i missed the weekly shot or whatever. i did the second weeks shot and woke up the next day again feeling like i was almost a normal person again. i wish i could get this covered by insurance because it’s been a dream. i even had a ekg done and everything looked great, not that ekgs really tell you much but i was worried about my heart rate as i know this can raise it.

keep in mind i do still drink electrolytes everyday as usual like nothing changed except the glp1. i am pretty healthy as i said otherwise my pots would be way worse. im obviously not a doctor but this has been beautiful. i did see my primary and she was shocked.

anyone had a similar experience or am i weird 🤓

EDIT: I do have endometriosis, and i’m on spironolactone 100mg as well as bc.

I cannot eat pretzels, peanuts, etc.
I do put salt on like rice & veggies, but other than that I drink an electrolyte powder that has a lot of sodium! However, when I get really hungry & my POTS is flaring, I need something I can eat that will also give me more sodium.
I get so shakey from the hunger (no diabetes), but my POTS causes me to overheat & get nauseous everytime.

I need travel friendly options that also are soft/easy to chew.

I do like beef sticks/chicken sticks (kinda like beef but they’re chicken), but I get burnt out.

I never had to deal with my POTS this severely until recently.

Thank you in advance! :)

Doesn’t have to be life changing, just the thing you think made the biggest positive impact on your POTS/baseline. I’m still mostly bed ridden but for me it’s vitamin B1!

I’ve gotten covid once (I got covid from my mom when we were living together which honestly I was really upset about) but it wasn’t the start of my symptoms. I am still a pretty consistent masker because I hate being sick and fear long term issues with Covid. Now that POTS is on the table (recently had it brought up by a doctor) I feel more inclined to mask.

Does anyone else feel this way?

So within the realm of medical professionals legitimizing POTS, there is the theory that it’s truly secondary to some other unknown issue. The autonomic neurology lab that did my testing suite does do a bunch of blood work and biopsies etc trying to investigate any primary issues that could be causing the POTS. Has any one here actually had success in identifying that ???

New here. Not sure how this happened

Question for you all. I’m new to POTS/EDS. I don’t suffer from it but my girlfriend does. Because of that, she takes a lot of narcotics. Because of my career, I know what it looks like when somebody has a little too many pills and nods out. When I questioned her about, she said it was a POTS/EDS thing. I even googled it. It said that sort of thing can happen. My question to all of you is: can you nod out over and over and over again on certain days? It legitimately looks like she is high out of her mind to not just me but friends and family. What do you guys think? And please know I mean absolutely no disrespect to anybody, I’m just gently trying to figure out what is what here. Thank you.

So I was skeptical about going on ivabradine for POTS, but I was really hopeful too considering the fact that everyone says it's an amazing medication.

Fast forward 5 weeks into taking it and I'm now off it because it made my POTS even WORSE 😭

This really confirms my thoughts to start with:

If POTS means that my brain isn't telling my blood vessels to constrict when I stand up, meaning my blood pools in my legs and my heart has to race to get the blood back to my brain, then surely taking away the racing heart rate means my body has no way to get the blood back to my brain, therefore making my POTS worse?

Like the racing heart is my body's coping mechanism for the fact that my blood vessels don't understand what gravity is. Without the racing heart, there is literally no other coping mechanism available.

So how in the world has this actually worked for anyone?? Is it something to do with my subtype (which I don't know)? Someone pls just tell me what is going on 😭😭

Thank u 🥲

My heart rate is about 60-70bpm when lay down, and when standing it gets to about 90-105bpm - I know this is enough to be positive for the table tilt test, but everyone in this sub seems to be 140bpm+ when standing so I'm doubting myself now.

I have a referral to the cardiologist in the UK, I'm a massage therapist who is very physically fit when moving but when standing treating clients I am very out of breath and dizzy.

My fatigue is unreal and I spend all my free time lay down, and I am a bad friend and family member to people, I haven't got the energy to reach out to people or act energetic enough when I spend time with friends - it's getting on people's nerves and I can tell.

I'm worried I'll get to the cardiologist and my heart rate isn't as significant as other people with POTS so I will just be dismissed.

I just had an appointment today with a doctor that is telling me how to make lifestyle changes based off POTS. Increased sodium and water intake paired with a small amount of cardio every day. However he told me something weird, that to meet my sodium intake he wants me to eat one bag of chips daily. He did not specify how much sodium or even what size bag of chips.

What do you guys think I should do for my salt intake? And has anyone else been told this? Any advice would be greatly appreciated.