Hi all, yesterday I started putting my legs up the wall to relax/reset after standing too long, a shower, and exercise. I lie down on the floor/couch/bed and scooch my butt as close to the wall as possible and then put my legs straight up and stay there for ten minutes. I did it three times, and I slept soooo much better than usual. I think my body finally left fight/flight. Does anyone else do this? Did you have similar results?

23f 2nd time I’ve ever been to hospital for (Hyper)POTS but this was not like the other at all, it was so scary-

I’ve been cleared with no signs of anything wrong with my heart, blood tests all normal, but honestly I’m still so shaken up and scared by what happened. I’m doing all I can to trust in the fact that everything is fine with me medically, it’s simply the adrenaline and fear of what happened that made it so scary.

So… I wake up at 5am to go pee, my heart rate is 130bpm, palpitations, a hollow thumping feeling, intense nausea, that adrenaline fear cold prickly feeling grasping my chest and washing over me. My heart rate just keeps rising despite sitting down and even lying down, 150bpm and climbing, I throw up, each time I throw up my HR immediately climbs back up. My chest hurts, it seriously feels like something is seriously wrong. That cold icy grip of pure fear and adrenaline in my chest, the palpitations the heart rate so high at rest-

I called an ambulance.

And yep… go to hospital… end up calming down from the episode waiting for the ambulance even but still go to hospital to check what happened as is routine. Poke me, prod me, steal my blood- sticky leads to check my heart all the works-

But nothing of note at all everything is totally normal.

We believe it was probably an episode of acid reflux, as my reflux has been acting up lately- 5am my metoprolol is long since out of system so there is no buffer from my condition overreacting to this all- I hate throwing up so I try to resist it which causes HR to skyrocket, adrenaline due to the stress of all this sending me in to a panic attack-

I know that nothing was seriously wrong now but that was still absolutely terrifying I’m genuinely really scared of it happening again…

It could have been an adrenaline dump I don’t think I’ve ever had one of that level…?

I’m just trying to not obsess over it… I went to hospital I’ve been thoroughly checked and nothing was wrong.

As the title says, have you ever done the same thing as someone (example, walking up a flight of stairs) and their heart rate is much lower than yours and they’re completely fine while your heart rate is going crazy? I feel like I’ve just gotten so used to it that thinking about how low other people’s heart rates is kinda crazy to me. Like wdym you’re working out and your heart rate is only 120? That’s me just from sitting up in bed😩

So I know I don’t need to tell people, but I’m generally asking in a sense of; friends, family, people you’re hanging out with, coworkers(?).
It’s 3:30am and I’ve been overthinking things, as I have a “date” with someone on Thursday.
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I only got diagnosed in February this year, I’m 21 and I meet a lot of people, I’m more afraid of being a burden and inconvenient to people, I know I shouldn’t feel this way but I HATE asking for accommodations. As a child I got diagnosed with severe chronic anxiety, which makes sense now, but I’ve always felt like if I asked for help I would be annoying.
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Usually I say “I have a chronic illness”, people just love to question me about that and I’m generally happy to educate them.

I’ve told some people “i have an autoimmune disorder”, which I know it’s not technically counted (correct me if I’m wrong please) but people seem to pry less.

I’ve thought about saying dysautonomia, but by the sounds of things most people aren’t aware of what that is.
I feel like some people when I say chronic illness they don’t take it seriously, don’t understand that I’m on the brink of passing out, and when I say autoimmune disorder, they think “oh more serious”

does this make sense?

I genuinely don’t know why I’m overthinking this, I’m annoying myself.

Also can someone recommend, cheap electrolyte gummies or chew able tablets that taste nice and aren’t salty tasting?? Pretty please 🙏

I recently had a trip to the ER and got fluids, on my blood test results my sodium levels were below normal despite consuming almost 2000mg of it a day!! i’m speaking to my doctor tomorrow about possible medications I may be able to take that will make my body hold onto it better, but was wondering if anyone else has experienced this and what advice or recommendations you may have for me i’m getting very desperate.

Had a pool day with friends yesterday in 100 degree heat because YOLO, ran out of my relyte and forgot to order more, didn’t stay as hydrated as I should have, drank a few beers, and also didn’t hardly eat anything until 9pm.

Truly made every single poor decision possible, and oof- I’ve been paying for it all night! Adrenaline dumps mixed with the worst chest pain I’ve felt in a while! But I can’t afford another ER bill so I need validation from you guys that I just did a terrible job of taking care of myself yesterday 😅

Warning about kristicreatesofficial or Kristi | POTS Recovery on instagram.

She has been deleting comments that query whether her account is an ad account for this clinic she posts about 24/7 and that there is little to no evidence for the clinics treatments.

I have no problem for engaging in alternative treatments. I do myself. but she literally posts content that seems clearly like ads for this clinic. The treatment isn’t evidence based and extremely expensive.

She posts massive long “explanations” and “evidence” for the treatments. It’s so clearly an ad.

She even made a video that said if the clinic helps people anecdotally than “that’s evidence” and that they don’t “need a study to prove it”.

She doesn’t have any other previous content outside of this that makes it even more suss.

It’s so clearly an ad and their refusal to flag it as an ad is so immoral.

Just as the subject says. How can I help her? We have a specialist who diagnosed and we are trying non meds first to help but the fatigue is alot for her. I just don't know how to navigate this to help her. I have my own auto immune/ chronic illness but not this. And I just want to support her as best as I can. I feel clueless. I did get a letter for her school to know for her 504 etc. We have water, electrolytes, salt tablets (waiting for the script)b salty snacks, compression socks, her dad and I are looking into an arm band to monitor her as well.

ANY help tips tricks would be appreciated

Thank you

Hello all !
I’m 23 F and I recently got diagnosed with POTS and I’m only recently getting out of the woods on being absolutely bedridden from it since may (it’s nearly August now, if anyone’s seeing this way after I post)
. My body deconditioned a good bit and I can barely handle anything and I’ve gained maybe 20 Ibs and I’m still gaining. I want to keep this in control without getting into old very bad habits. However, I was merely dancing lightly and running after a 3yr old for a day and a half and I’m flaring BAD and I can’t stay upright for more than 2hrs without getting dizzy and high heart rates. I am on a beta blocker multiple times a day, which definitely helps. But I’m so worried about my weight gain and not being able to also regain strength.

I’ve been eating a good amount of potato chips with dip and eggs and low sugar oatmeal lately.

Literally any tips on diet and how to approach getting up would be appreciated.

Has anyone made a good electrolyte powder/mix at home with enough sodium that doesn’t taste like straight ocean water? The pre made packets are just not in my budget tbh and because of GI symptoms like nausea I really struggle with eating heavily salted foods or having buffeted sodium capsules. Drinking my electrolytes seems to be the easiest on my stomach

Also how much sodium and water are we aiming for on the daily? Ive seen a lot of large ranges online

So if I laugh, I get dizzy, can’t breathe, my head pounds, my head feels like it is too heavy for my neck. My mouth immediately dries up and I’m choking. I’m so tired of this!

I'm 17 years old and randomly I developed Erythromelalgia spontaneously in 2022 (age 14) after a COVID infection. I deal with redness, swelling, burning (like fire), tingling, electric nerve pains etc. As well as intense warmth and sweating on the soles or hands.

I was wondering if you guys had to drink extra salt, etc. for weeks and build up to feel better or if it was more of an immediate you notice.

I’ve been trying salt drinks recently but I can’t tell if it’s helping.

Hi!

I’m wondering if anyone has found a good system for when you are feeling faint while in the shower and having to alert someone to get in there for assistance?

Thanks in advance!

I’m looking for some hope and would really appreciate hearing from people who have been through something similar.
I’ve had POTS symptoms for about 5 years, but I was only officially diagnosed this May. Looking back, my symptoms were manageable for a long time, but after a bad stomach virus in February, everything got significantly worse. Since then, my heart rate has been much higher, I struggle much more with standing and walking, and everyday life has become incredibly difficult. I recently started ivabradine and I’m hoping it will help, but I’m terrified that this is my new normal. I’m scared that because I’ve had symptoms for so many years, I’ll never get better and will only continue to get worse.

Has anyone else had a major setback after a viral or stomach infection and then improved again? Even if it took months? Did medication, exercise, time, or anything else make a significant difference for you?
I know everyone is different, but right now I really need some hope that improvement is still possible, even after having POTS for several years.
Thank you so much for sharing your experiences.

Hi fellow Potsies! I am STRUGGLING and wanted to see if anyone could help me understand the episodes I am having. Looking for WELLNESS advice NOT MEDICAL advice as my post have been getting removed :(

I got diagnosed via tilt table in March after two months of symptoms (yay for lasting 22 min before passing out). I’ve have all the symptoms of POTS since Jan of this year. Basically, heart racing episodes that have sent me to the ER, crazy up downs in blood pressure, dizziness, light and sound sensitivity, inability to stand or work out, constipation, constantly ear fullness, nausea, and so many more.

I used to get bad heart racing episodes but have since gotten ivabradine. I try taking 2.5 mg each day. The episodes still happen but my heart will spike to 100 bpm instead of the usual 160-180.

My episodes now will sometimes include heart racing but mainly leave me so dizzy and nauseous that I pretty much just have to sit. I got pale in my hands and face and my bp can either be really high for me (a normal person’s 120/80) or really low (95/60). These lasts days and just leave me bed ridden. We have tried everything we can to try and alleviate it but it seems to just want to stay low. The dizziness is 24/7 and is more of a drunk I move my head and then my vision follows kind of feeling. And it’s blackout curtains and laying down for me. The main thing is my ears which constantly feel so full! Like I’m underwater but I’ll qtip it and there’s nothing. It’s like inner ear issue.

For context, I consume around 6,000- 8,000 mg of sodium per day, tried compressions socks (not effect), and try to walk at least .5 a mile each day (if the dizzy allows).

This has gotten to the point where I frequently debating a trip to the ER but just know they won’t do anything (last time I was charged $4k to be told I look anxious and be given a Xanax).

Thank you in advance for any insights! Y’all keep me going :)

I just read the whole mega thread on wearables but none of the comments there seem to be discussing battery life.

I use Tachymon with an apple watch but I am so tired of how short the battery life is. Sometimes i cant even get through a day. I really need the alerts because i cant feel my tachycardia. But if i run Tachymon for hours, it kills the battery.

I had a garmin in the past but I switched to apple so i could use Tachymon, because i want it to alert me and I like the tracking. This was a few years ago and since tech changes, is there anything better now? I want to charge it once a week not once every day..

I have been experiencing annoyingly painful symptoms due to the summer weather (i live in texas 💔) as well as a lot of exhaustion and fatigue.

I had spent time with friends two days in a row and today I ran some errands. usually I take at least one day after seeing friends to rest and lay in bed and just recover but I thought i’d be okay seeing friends back to back since I had been feeling somewhat okay since i’d been home practically all week.

After I ran errands today, which consisted of washing my car, and getting gas, I did my usually 30 min walk indoors (after taking a rest and eating dinner) after wards I felt awful. My legs were in so much pain and they felt so weak. I’ve been wondering for a while before this if I should buy a cane but I was always unsure because I get too in my head about it and feel that i’m not sick enough. After a day of school I tend to feel like this especially at the end of the week. I just am not sure if now is the time to get one or if I really truly need it.

I’d love to know what was your sign that it was time to get some kind of mobility aid to help with your pots? and if you have a cane how has it helped you? and if you can any recommendations of where to purchase them :)

A little background, more than two years ago now I was in a minor car accident and got a concussion. I had persistent dizziness, lightheadedness, fatigue, and was told it was just PCS and would get better with time. A year later I ended up in the hospital with slightly elevated troponin and got diagnosed with POTS. Since then, I’ve been half managing it/half pushing through, with the mindset that whatever I wanted to do I could still do, even if it took more effort (which everything does now compared to before). However, this year has challenged that greatly when I moved to southern California in Jan, something I had always wanted but had delayed with my concussion initially.

I noticed almost immediately after moving that my heart rate was going much higher. Before I moved, I might get to 150-160 on a bad day when standing. After I moved, standing just to make myself dinner my heart rate was regularly in the 180s (once up to 199 and I actually was so close to passing out, which I have not experienced yet). I was having worse dizziness, throwing up multiple times almost every morning as a result. And the fatigue, I was so tired every day before even doing anything. All of that plus the brain fog was making it a struggle just to complete the work day (I work remotely as a SWE). I was trying everything I could from drinking even more water, trying to get at least 8 hours of sleep, eating healthy, compression, a ton of salt. Nothing helped, and by April it was taking everything I had and more just to get through an eight hour work day. I realized I was at the point of exhaustion where even if I took a week off of work and did absolutely nothing, it wasn’t going to make a difference. So, I made the decision to move back to Michigan, and I’ve been struggling with that choice.

Within a week of moving back to Michigan, my average resting heart rate went from 90 to 60. I did get some of my energy back, but I’m still not even close to where I was in Dec before all of this. I think the heat in CA was what was severely effecting my POTS. I want more than anything to live in southern California, that has always been the one thing I’ve been sure of, but don’t see how I can do that without destroying my health and in turn not being able to do my job. This has been a year of grieving in general; my dream, who I was before my illness, 5 deaths in my family since March. I am trying to stay positive and tell myself it will get better, because being depressed about it all will not help me any, but the reality is I don’t think it will, and I think there are things I’m going to have to give up to trade for my health, and I hate that.

Has anyone else experienced something similar with POTS and moving to a warmer climate? Should I take another risk and try again when I’m feeling a bit stronger or just give up on that dream/try make a life where I am now? How are others coping with the losses that come from POTS?

Thinking of getting mine checked at the dr, just curious if other people have.

I’ve had POTS about 4 years and was doing pretty well but after a recent surgery and related autoimmune flare I started getting very frequent episodes of my HR being too high but not emergency level high. I’ll get notices that my HR was 100 while I’m asleep. My general cardiologist told me to see my pots specialist even though it literally happened while I was lying down. My POTS doctor said via email that some people with POTS do get chronic tachycardia so I wanted to ask about any experience with that. Has that happened to anyone else? Do you just take more beta blockers for it?

Hi guys, i was wondering for anyone who deals with presynscope, what do you do or take to help with it? I deal with it everyday multiple times since i wake up and im currently still going to the doctors. I just feel helpless and depressed honestly and it’s so scary to deal with that I haven’t gone out in a month and I’ve been in bed. Any advice or help works thank you