What's one thing you want people to know about this condition and living with it?
For me I think its that I can't stand up for long like in long lineups or waiting for the bus.
Does anyone know of compression clothing that works well for men? All the leggings, bodysuits, etc are for womens bodies. I was wondering even about mens dance leotards?
I have POTS and am female but my adult son sounds v POTS like but he also has GERD or something like I do (lucky him he got my genetics apparently) . I am finding shapewear body suits to be way more comfortable than high waisted leggings or wrapping a compression garment around my waist. Compression leggings and tights press too hard at the waistband and sometimes cause stomach aches for me.
He tried socks but they dont seem to do anything for him. He is also quite thin so not sure if that is part of why? He also might not have POTS but i felt that compression is a very low risk way to see if something can help with his symptoms.
Any men in here have compression experience? Ive seen shirts but are they enough? Thanks!
I'd love to hear what's made the biggest difference for you.
Could be:
Hopefully this helps people who are newly diagnosed too.
One thing that’s really changed the game for me for plane travel days-you can take ice through TSA! I always fill my steel bottle to the brim with Ice and then get water as soon I enter and it’s SO helpful to be able to immediately chug ice cold water.
Nice vendors will even give you ice to refill it with during connections if ya need!
Since 3rd July last year, I’ve been dealing with what seems like POTS or some form of severe autonomic dysfunction, but nobody can tell me what’s actually wrong. My entire life has been turned upside down.
Before all of this, I weighed around 66–70 kg. I’m now 60.5 kg at 6’0”, and I’m becoming severely underweight. Eating has become a nightmare because it leaves me exhausted, breathless, nauseous, and sends my heart racing. My appetite has almost completely disappeared, so getting enough calories in feels impossible. Everyone keeps commenting on how pale I look.
The symptoms have become so bad that I’m basically bedbound. Some days I can’t even brush my teeth. I can’t have sex. I can’t live anything close to a normal life. Today I walked just 0.2 miles to my GP surgery for a blood test and genuinely felt like I was going to pass out.
What’s confusing is that my heart isn’t always fast. Sometimes when I’m lying down it becomes severely bradycardic, then as soon as I’m upright it can feel like it’s going crazy. I’ve had an echocardiogram and a 24-hour ECG, but both were essentially normal. The problem is the ECG was done while I was just sitting in bed, so it didn’t really capture what happens when I’m standing or trying to function.
I’m waiting for an endoscopy later this year, but I feel like I’m deteriorating while I wait. Every day feels like survival rather than living.
The hardest part is that nobody seems to have any answers. I’ve spent the past year watching my health decline, losing weight, losing independence, and losing hope. I’m exhausted physically and mentally.
I’m reaching the point where I don’t know how much longer I can cope living like this.
The worst part is that this illness hasn’t just taken my health—it has taken my life. I lost my girlfriend, who I was with for over a year. She supported me so much through all of this, and I miss her every single day. I genuinely believe this illness ruined our relationship. I constantly think about how different things could have been if I hadn’t become ill.
I’m not looking for a diagnosis over Reddit, but has anyone experienced anything similar? Did you eventually find out what was causing it? Was it actually POTS, something gastrointestinal, an autonomic disorder, or something else entirely?
I just want my life back
I’ve been wondering if this could be related to POTS or if anyone else experiences it.
I get this almost constant feeling that my stomach feels “hungry,” but I’m not actually hungry and often don’t even feel like eating.
It’s hard to describe because it doesn’t feel like normal hunger. It’s just this empty/hungry sensation that can stick around for hours, even when I know I’ve eaten enough.
I’ve also noticed it seems to be worse after a poor night’s sleep, especially if I get less than about 8.5 hours.
Does anyone else with POTS experience this? If so:
Does it happen every day or only during flares?
Does eating actually make it go away, or does the feeling stay?
Have you found out what causes it or what helps?
Just curious if this is something other people with POTS deal with or if it’s unrelated.
Vegemite has 165mg of sodium per 5g serve, meaning 10g of Vegemite has more sodium than most sports drinks (Gatorade, Powerade etc)!
On days I’m struggling to get in enough sodium or having worse symptoms I eat 10-15g of Vegemite and then chug about 600ml of water.
Also works great at the gym as I don’t particularly like sports drinks but compete/train as a powerlifter so need to keep my salt up (I keep a squeeze bottle of Vegemite in my gym bag).
Pros:
- Tastes better than plain salt water (to me at least)
- cheaper than electrolytes (which I also use)
- no potassium (I already get so much and have been told to watch it)
- portable (squeeze bottle or these single serve packs)
- guaranteed to confuse anyone who sees it happening!
Not recommended for non-aussies or aussies who weren’t raised by parents who caked Vegemite heavy on their toast!
(Tagged as funny cause it is, but this is a real thing I actually do and has been an awesome help in keeping my sodium up)
I have had POTs symptoms since 2020 but just got diagnosed this month so i’m very beginner when it comes to the lifestyle changes to accommodate it. That being said, I see reels all the time about emergency salt intake. So, when do you know you should increase your sodium? I will say I do intake caffeine frequently and nicotine as I work 3rd shift and have trouble staying awake from feeling constantly fatigued no matter how much sleep I get. I bought the brand SALTT ultra variety pack and I love it, I currently only drink one 26oz water bottle of it. Otherwise I’m really bad at water intake, I feel so full after the smallest sips and at times it takes me 2 days to finish that same 26oz bottle. Any tips for bettering my water intake will also be very appreciated.
My HR recovers rather quickly fortunately as long as I stand still and I have not reached full syncope, very close but only hit presyncope so far. I only have tachycardia when changing positions, hot, etc. I haven’t had random flares that I see people have online (that I have noticed atleast) and if I start feeling lightheaded and SOB randomly, I track it with Tachymon on my Apple Watch series 9. Idk though I feel like i’m not doing things right. I should also mention I have been on propranolol 20mg once daily for about 4 years and that definitely helps me.
i’m going shopping soon, and i’m trying to build my ultimate “make life suck less” list.
i’m not necessarily looking for the usual answers like salt, compression socks, medications, etc. i’m more so talking about the random products, services, gadgets, furniture, subscriptions, or accommodations that have improved your day-to-day quality of life and helped you function more like a normal human being.
i don’t care if it’s $5 or $5,000. if it’s changed your life, please share.
some things already on my list:
- a kitchen stool with a back so i can sit while cooking
- a hair dryer stand for days when i’m in the middle of a flare and don’t have the energy to dry my hair myself
- grocery delivery services
- monthly cleaning services
- paper plates
- a roomba for when i don’t feel like vacuuming or sweeping
- a crock-pot and freezer meal prep system (i actually have a list of really good crock-pot meals, so if anyone wants it, let me know and i’ll DM it to you)
i’m dying to know: what’s the best purchase, service, or life accommodation you’ve made because of your chronic illness?
bonus points if it’s something unconventional!
i just tried to make the bed and am now in the midst of a flare, i can't shower without my shower chair without the risk of passing out, i can't reach above my head to grab things without numbness and blood pooling, i jog for 2 seconds and feel like I'm on my death bed after and same with stairs, and now driving is starting to become something i worry about & more bothersome in a flare & the chronic exhaustion. how do you guys cope with the loss of being able to do simple life tasks and activities? my fiance doesn't understand how much it affects me physically and mentally, and its hard to advocate for myself without feeling like i'm exaggerating.
TL;DR Tips for putting POTS into words management can understand?
Recently diagnosed (last 2 months) but I’ve likely had it for years and been managing by sheer denial and some other conditions messing with my symptoms.
My work is one of those places that love people being in office, despite my job being quite independent. I was previously approved for 3 days at home out of 5 (late diagnosed neurodivergent) but am now asking for 4 so I can work lying down and avoid triggers like 2 hours of commuting and all the extra standing and walking that comes with going to the office.
Just spoke with my manager who I’ve been transparent with about my diagnosis and he just didn’t get that because my recent heart scans came back okay that I’m not just magically fine now. (Despite me still obviously using a walking stick to keep me upright).
Has anyone gone through something similar/have a go-to short explainer for people who don’t get it?
I have a combination of EDS, POTS, and some other physical issues along with a lot of mental ones, so that might be why it's so severe but wow. I was always warned by my neurologist about stress levels, but now I almost get why this disorder is mistaken for psychogenic (almost).
I've been under extreme stress lately and had a lot of mental issues. I'm crying hard multiple times a week. When I cry I always get a fever. Then I get air hungry and am left with a headache. I try my best to drink a lot of water after to get back those fluids, but it doesn't seem to help. The next day I am in so much pain, not even just joint pain from the EDS but all over body pain (not sure this is the POTS or EDS or something else). Then, in addition to that, I'm blacking out as soon as I get out of bed, no matter how long I sit and wait there at the edge of the bed. For multiple days after, I'm physically useless. I have to sit down any time I reach into the cabinets. Showers are extra hard to recover from, and a bath would help with the stress but I just know I'm going to pass out in there.
Right now I'm kind of feeling worse mentally because I can't do anything but sit here being miserable because I can't handle standing for more than a few minutes at a time. My POTS is very well controlled normally, but this situation and stress is killing me.
I am very overweight and am trying to lose about 200 pounds. I am down 36 pounds since starting. I was warned beforehand that being in a calorie deficit would make my pots worse. They were not kidding. The fact that I won’t have to do this forever helps me stay with it- it is temporary and I will be better off when it is done. But omg it so bad. This post is really just a vent/whine to people who would get it. Thanks for reading.
hi there, i was just wondering if anyone has any advice on any anti-nausea medication i can take? i got given some recently after a trip to a&e/ the emergency room, but soon after this i got prescribed ivabradine and now i cant take that or a lot of others anymore :( (also in the uk so there’s less available otc)
the nausea’s getting really debilitating and i can barely do anything; eat out (or sometimes at home too), go places with my friends, go on dates etc. i have an event soon for my birthday where i have to travel but i do worry that i’ll have to cancel. or that i’ll be too ill to enjoy it.
any advice is greatly appreciated as i really dont know what to do about this, and i’m unsure if i have the time to see a doctor before my event <3
So, I’ve been doing the POTS protocol by CHOP and I was wondering about the days I’m having a flair. Do I push myself during those days? Do I take a rest day?
I can anticipate people telling me to see a physical therapist to assist through the protocol but surprise! I am one. I just happened to not work with this population. POTS has gotten increasingly worse the last year and I’m trying to help myself so I can keep helping my patients. My cardiologist is who diagnosed me.
Any feedback would be amazing!
I know it sounds obvious but when I eat a ton of veg, particularly cruciferous veg, I need less salt and water and am generally less dehydrated. I'm not talking a pathetic little side salad, I literally eat a whole head of broccoli with lunch and another one for dinner lol (steamed and seasoned lightly with olive oil, salt and pepper 😘👌 Also recommend chopped red cabbage, raw with the same dressing). When I eat like this, I can drink 1/2 a gallon (2L) of water instead a whole gallon (4L) and feel fine.
I know a lot of people can't eat that much fibre at once but I gradually increased to that amount over time because I kept noticing how much better I felt. I also love vegetables so that helps.
I know everyone has different dietary needs/difficulties but just sharing in case it helps someone.
I had a weird experience this morning and wondered if this is something anyone else has experienced? I only got my diagnosis in the last year so it's all pretty new to me.
I had been woken up due to loud noise in my home, and without thinking got up from bed too fast. As I was stood at the doorway my mum said my eyes glazed over (I don't remember anything past standing at the door). She said I fell to the floor thankfully sort of sitting, and she ran over to make sure I didn't hit my head on the drawers behind me. But she said my arms straightened out and my head went back and I started seizing, my arms were straight kept jerking up and my head kept jerking back. She said it lasted around 10 seconds.
When I came round, I felt really confused, my mum and dad were there and I didn't know what happened, I just remember a brief feeling of jerking before snapping out of it. My mum wanted to get my dad to call an ambulance, but I didn't think it was necessary since I have a drs appointment for POTS tomorrow anyways, and my past experiences at A&E were 11 hours of waiting for them to say nothing is wrong and then my doctor saying they won't investigate it further and just that I shouldn't drive which I don't anyways.
I felt pretty anxious and out of it for a few hours after, which I don't know if it was maybe just the shock and being a bit scared of what happened. So I had some electrolytes food and water and slept again for a bit.
My POTS has been flaring pretty badly recently, which could maybe be the summer heat or possibly because I've lost some weight? I find it's horrible in the mornings taking me longer and longer to get out of bed. I don't know I guess I'll find out more after my appointment tomorrow if I manage to get rereferred to the POTS specialist. I wasn't aware they took you off their list from being able to see them if you haven't seen them in 6 months.
I've made sure to write down some notes from what my mum saw and how I felt to mention at my appointment tomorrow. But I guess I just wanted to know if this is a common thing that anyone else had experienced with POTS?
Hey guys! I’m about to go on a 10 day Europe trip. Does anyone have any recommendations for snacks or other items to bring that will make my life easier?
So far, I’ve bought a portable fan and electrolytes.
So I went on a ghost tour last night with my mum, and was obviously concerned that I may get dizzy or faint as I do quite often these days. The tour was insane but I'll spare the details since this is about pots.
The entire time I was on that tour my feet felt like bricks of ice. I normally have the opposite problem, where my feet get hot after standing too long. I was also surprised that I was able to stand in one spot for a bit and not feel dizzy or faint at all. We definitely had some paranormal experiences, that's not up for debate.
I figured I must have just been lucky to be symptom free, and maybe that's all it was, BUT: as soon as we left I imediately felt dizzy. We got out to get a hot chocolate somewhere (it's winter here and was very cold) and I was quite dizzy. But nothing the entire tour.
So my mum joked that ghosts cure pots. Anyway, just curious if anyone else has had anything similar happen or if this is just a silly coincidence. Or if potentially the state of fear affected my body in a positive way? But I have been scared and dizzy before so I don't buy that.
I cannot watch videos for this type of thing I need a written list, pictures are a bonus. I really want to start at least working on maintaining my strength and stamina but don’t want to just start exercising willy nilly. So, does anybody recommend a book or specific place I can get a decent list of the Protocol?
Thank you!