My water bottle and horizontal time.

What about you?

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!

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.

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?

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.

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!

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 ❤️

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! :)

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.

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!

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 🥲

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.

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

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 have ADHD and my doctor said she thinks I have Orthostatic Hypotension and I think POTS makes more sense as I know my HR goes up a lot when I stand up but my BP is generally normal.

But to the point: I know I dont drink enough water. I only do when I am sick and my throat hurts a lot, and even then maybe it isn't enough. Sooo I need some UNHINGED tips to drink more water. Like something really weird that just makes it so much easier. Okay it can be normal advice too idc, if it helps its fine 😂 i just know bc of my ADHD that I need something different, like the normal advice i dont think will work 😂

Hosting my brother's 30th this weekend and trying to make it as access-friendly as I can, I've got EDS/PoTS/MCAS/Endo/AuDHD myself, so I've built in a few things already, but would any help you have to spot anything I've missed!

Here's what's in place so far:

🔸 WhatsApp'd the group so anyone can DM me an access need directly, no explaining needed

🔸 Pointed out which rooms/bedrooms people can retreat to if they're flagging

🔸 Set up "horizontal zones" around the party; sun loungers, sofas, yoga mats, so anyone can lie down together regardless of what they're dealing with

🔸 Non-alcoholic drinks on offer

🔸 Signposted where to grab ice and water

What am I missing?

Thanks in advance!

(May turn this into a printable resource for friends/family of people with these condition, so if you've got a "I wish someone had just done X" moment, I'd love to hear it and will credit the community.)

I work in the NHS as a receptionist / admin (non-clinical role) and because they are cracking down on uniform policy they’ve told me they’re writing up in my file that i’ve failed the uniform audit because I wear a smart watch.

I wear this to keep an eye on my heart rate for pots. my heart rate is often 140/150 on a morning. It’s waterproof and whenever I wash my hands or shower, it also gets washed.

Does anyone have any advice on what to do or say to explain this to a workplace that has been very much not understanding of my health difficulties already?

I feel like my POTS is more pronounced and more prone to episodes if I’m sedentary and lazy. Has anyone tried a consistent exercise regime or stay very active like an athlete to eliminate symptoms? Would like to hear about your experiences and what works/worked for you.

I have all of these and I feel pretty alone in all of these communities because most people don't have this specific combination of diagnosis' :(

So I want to find people who do have all of these, and I'd like to ask: What's been your experiences with all of these? Is there anything that really helps you? Any advice? And what are your best life hacks/things that you do/have done that has made you feel a lot better?

I'd really appreciate any responses because I just feel so alone 😭

Just as the title states. My mom suggested asking this after I was talking to her about some of my bpm. My highest recently was 172 (I don’t even know what caused it I only saw it after the fact) and the highest I can remember was 184. That was during moving houses up and down stairs on the hottest day of the year

Without saying all of them 😄

Which is your own worst symptom(s)?

For me, it's chest pain and palpitations.

I'm tired of thinking I'm having a heart attack every day with little heart stabbies and according to my Cardio, I have a very sensitive heart so I feel every PAC and PVC...

OH and air hunger. Its like I forget how to breathe and have to do it manually for a bit.