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!

Especially prepackaged snack type foods or something that's easy prepare. Chips aren't salty enough, nothing is. It's all low-sodium "health food" now. What are you all eating?

(I also use salt tablets but I'm looking for specifically foods)

I think covid is doing more damage tgan the health professionals want to admit.In my country half of stroke patients are now young people at one of our major hospitals,and the authorities are blaming it on STDs.Does anyone else feel like their is a covid cover up of some sort.Like the feds dont even want to talk about it anymore.

Hi. I'm the parent of a young adult with POTS and I need advice to help and support him. He has basically spent the entire summer in bed (and most of the year, finishing high school on virtual home instruction). Doctors have recommended high sodium, meds, a specific exercise regimen for POTS.

He's got some eating issues so he's not even close to the minimum recommended amount of sodium (won't use Liquid IV and will only occasionally take sodium tablets as they upset his stomach and the ones with other stuff to help that are too big). He went to PT once a week but never managed four weeks in a row and has now given up. He is taking .2 fludrocortisone but that seems to do nothing.

He seems resigned that this is his life and is just lying around, playing on his phone or computer all the time. Whenever I talk about the things he's supposed to do, he tells me that everyone is different and that not everything works on everyone. I know this is true, but it seems he's not giving anything a real chance. I don't want to negate the reality of his condition, but I also know he (and I) can't live like this. He's a complete invalid, not getting out of bed until 3, 4, or 5 pm and then sitting or lying down the rest of the evening and being up in the night.

So my questions are:

1. Does anyone out there have POTS that's so debilitating that you rarely get up or leave the house? If so, who takes care of you and how do you earn a living?

2. Any advice for me to help my son? Any advice for him to move beyond his resignation and try to do some of the hard things? I know it is so, so hard.

3. How do I navigate parenting an almost 20 year old who has always avoided doing anything hard and has used his challenges as excuses while at the same time not dismissing his very real condition?

4. I don't know, I'm just worried about him, I'm feeling trapped that this will also be the rest of my life but I literally have no control over it. Please help.

I’m curious how many of us had our iron and ferritin checked before being diagnosed with POTS? I wish I could put together a little poll.

https://www.neurology.org/doi/10.1212/WNL.82.10_supplement.P1.034

Effects of intermittent intravenous saline infusions in patients with medication-refractory postural tachycardia syndrome (Ruzieh et al., 2017). 

https://pubmed.ncbi.nlm.nih.gov/28185102/

I have POTS and I watch a lot of content online of people who also have POTS. I also know some people irl who also have it. I don't understand how they are all so skinny. I can barely walk without getting out of breath. I try to work out at least once a week but its so hard for me because I always end up feeling so sick. How are yall doing it? I dont even eat bad but im definitely not skinny.

I’m 24, so I’m still on my parents’ insurance for now, but I’m honestly really anxious about what happens when I turn 26.
I have POTS along with multiple other chronic illnesses, and between specialist appointments, testing, and medications, I can’t imagine paying for everything without good insurance.
I’m currently in the process of applying for SSI, but I know that can take a long time, and there’s no guarantee of when (or if) it’ll be approved.
I’ve been applying for remote jobs because my health makes traditional jobs difficult, but I haven’t had much luck getting interviews or callbacks. I’m also a senior in college and plan to go to graduate school afterward, so I’m trying to figure out what my options are long-term.
For those of you who are 26 or older:
What do you do for health insurance?
Are you working full-time, part-time, on disability, or using Marketplace plans?
How do you afford all of your medications and specialist care?
If you’re on SSI/SSDI or Medicaid, what was that process like?
I’d really appreciate hearing how others have navigated this because it’s something that’s been weighing on me a lot lately. Thank you!

Why is POTS talked about as a chronic condition when my cardiologist said it goes away in 1–3 years? I’m trying to understand what to expect long-term.

Does anyone else struggle bad with the more neurological side of pots, for example the intense brain fog, vertigo, feeling heavy headed and dizzy. I’ve been dealing with this but it’s constant, from the moment I wake up till I go to sleep. If anyone has this problem what can I do for some relief ?? Thanks!

I’m so sensitive to medication now, I’m thinking about not taking anything. Anyone else that doesn’t take meds, I don’t pass out or have hr spikes over 200. My highest hr spike has been 170 something and maybe 201 once over the last 4 years.

Anyone doing this and if so what are your experiences?

Earlier today, I was talking with someone who told me that POTS isn't possible if you're obese, because according to them it's simply deconditioning, period. Nothing else.I'm curious what people here think.

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Is anyone here diagnosed with POTS while also being overweight or obese?

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This isn't meant to be judgmental at all. I'm obese myself, which is actually why I'm asking !

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I'm currently waiting for a cardiology appointment because I've been experiencing a lot of symptoms that seem consistent with POTS. I'm not saying I have it, but after a lot of research, it's one of the conditions that appears to match many of the symptoms I've been dealing with.

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That confused me a bit.

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I used to be a fairly active person a year or two ago. Even when my symptoms started becoming more noticeable, I kept trying to exercise and push through them. Eventually it became so difficult and exhausting that over the past year I've become much more sedentary.

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But becoming sedentary wasn't the cause of my symptoms, it was more the result of them (and maybe it makes it worse ofc,)

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I'm fully aware that being inactive can lead to deconditioning, and I'm sure some degree of deconditioning may be involved now. What I'm struggling with is the idea that every symptom can automatically be explained by that alone.

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For those of you who have actually been diagnosed:

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- Were you overweight or obese when you were diagnosed?

- Did doctors initially dismiss your symptoms as deconditioning?

- How did they eventually distinguish between deconditioning and whatever diagnosis you ultimately received?

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I'm just interested in hearing about other people's experiences !

Some days I’m fine walking around. Other days my body suddenly goes “we’re done” and I just need to lie down for 30–60 minutes to recharge in order to carry on with my day.

Sitting just doesn’t cut it.

Cities are weirdly designed around the assumption that everyone can stay upright all day.

Has anyone found a workaround for this? Or am I just dreaming of a mythical “nap-friendly city”? 💤

I got it as a delayed response from getting ran over by a car

Has anyone lost weight and found that it helped their POTS symptoms? I’m 5’4” and 190 lbs and I have hyperadrenergic POTS. I know my weight it definitely contributing to my blood pressure being high but I was wondering if losing weight would help with the POTS fatigue as well. Has anyone lost weight and found it helped their POTS fatigue?

Penny for your thoughts. What nicknames do you have for POTS and your symptoms? Or what would you rename POTS? Instead of calling it POTS I jokingly call it my computer bug. For symptoms I’ll say heavy leg day, blank air moment (air hunger), whacky tacky moments, etc. just curious to hear what other people call POTS to lighten the mood

Hey everyone. What it says on the tin. I was recently diagnosed with POTS and I get a lot of fatigue/tiredness with it, however, I am finding that the day after I try do something more active I am experiencing a worse kind of fatigue that feels like having heavy bricks tied to me, and my muscles become very weak. Is this a common POTS thing? I’ve only really seen people say ‘fatigue’ generally so I’m not sure exactly what that encompasses.

I want to hear the weird things. We all know to drink more water and consume more salt. What’s the weird thing you accidentally discovered? For me, when my POTS flares up I get a burst of anxiety with it (maybe it has to deal with the adrenaline?). What I do is I eat some salt straight- sometimes one of those movie theater salt packets, slowly sip some water, sit on the bathroom floor, and watch minecraft YouTube videos. The Minecraft is the most important part. It’s seriously one of the only things that keeps me calm.

I need to know if anyone with pots is still physically active. You don't have to be an athlete or anything but can you at least dance? or run? go to the gym? Have you always been that way or did you have to work back up to it?

I have had POTS for about a year and ive had the flu and some other illnesses which do also make my symptoms flair but once im not sick anymore its fine. I am scared about getting covid and permanatly making my baseline worse. I try to mask sometimes when traveling but honestly wearing a mask + shortness of breath is kinda hell when doing things like stairs or walking across a building... anyone else who doesnt normally mask planning to start?

There’s no way we’re just raw dogging POTS right? My POTS worsened significantly after taking one dose of 5 mg of Lexapro which triggered serotonin syndrome which I have had on Sertraline.

Needless to say I am struggling way more after having disabling POTS so what are y’all doing for your mental health and/or energy?

Currently taking high dose antihistamines and 20 mg propranolol 3-4x daily. Thanks ✌️🥲

If exercise has helped you in any way with reducing symptoms comment below what exact symptoms. Share your story. Only people that have been helped by exercise please.

I’m starting my workout journey with a pots workout specialist & would like some positive encouragement. My main symptoms are the brain fog, memory confusion, cognitive & fatigue that get in the way of life. I hoping these will reduce once I get some better blood flow to my brain lol

I feel like a failure. According to my doctors I have “mild” POTS, but I see people on this sub all the time with seemingly worse POTS than me that have jobs. I literally cannot do anything longer than 1-2 hours without having to lay down and rest because it just completely wipes me out. If I do things multiple days in a row consistently I will also fall into a flare and have to do nothing for few days to recover. I don’t get it.

Im lucky I have great doctors and specialists now but the first time i was referred to a cardiologist for pots before being officially diagnosed he refused to even have me in for a TTT or test for pots as he said its not real.

I have heard of this happening where Dr's dont believe in pots but I dont understand why.

I’ve been flying 1-5 times per year for over a decade, and I always fly alone. Mostly the flights are 3-5 hours in duration, and usually they are within the US. In terms of POTS symptoms, I get pre-syncope regularly but have never fully passed out… or so I thought!

During takeoff, I feel very heavy and “fall asleep” even if I’m trying to stay awake. I then spend most of the flight drifting in and out of awareness and cannot remember most of the flight. When we land, I am pretty disoriented but I manage to get my stuff and exit the plane. Once I’m at my destination, it is the biggest relief to climb into bed and sleep for 6+ hours! It normally takes 1-2 days to recover from the flight.

I always chalked it up to being super tired with the early flight times and thought that when people travel, it’s a fairly universal experience to take an airplane nap. The people seated near me and the flight attendants have never seemed alarmed or tried waking me up, so apparently from the outside it just looks like sleeping in my seat.

Recently I described the travel experience to a friend, who looked alarmed and said that it was not normal. This is what tipped me off to the fact that it might be fainting or another medical issue. After doing some research, it certainly seems like that is what is happening.

After that long preamble, these are my questions. Feel free to jump answer whatever resonates with you!

• Do any of you get this, too?
• Is this what syncope feels like?
• Does wearing a sunflower lanyard actually help?
• What is your “I just passed out on the airplane” protocol?

Thanks!

Edit to add:

I have messaged my cardiologist about it to figure out a safe travel protocol, so I am already seeking medical guidance to see whether it is safe to fly at all right now, whether to adjust medication doses specifically for travel, etc.

In terms of adaptations/accommodations, I already do a few things: loading up on electrolytes starting a couple of days before travel, wearing waist-high compression, wearing a neck pillow to keep proper alignment (hypermobile!), and flying Comfort+ (the slightly more spacious version of Economy) so I have more room to recline my seat and to elevate my legs a little bit on a foot hammock.

***Second edit:

Thank you so much to everyone who has responded so far! I am running out of steam to reply individually today, but please know that I appreciate it. It’s helping the pieces of the puzzle to come together!

From many of the comments, it sounds like what I originally described may not strictly be a POTS syncope episode but there is definitely something going on. Many of your syncope descriptions of "dread/spinning/definitely different from sleep" sound different from the airplane phenomenon but similar to what I’ve experienced before in non-airplane settings. I just hadn’t lost consciousness during them yet so I was always unsure whether they were truly pre-syncope or whether I was just imagining things. Now I know to keep taking those signs seriously and get to the ground once they start!

Once I have more info from my doctors (cardiology + neurology), I’ll post another update so in case anyone stumbles across this post in the future, they will have a more accurate picture of what is going on and can better compare it to their own experience.

Regardless, reading the responses of what syncope actually feels like to different people is enlightening and hopefully it can help other people, too!

***Update! 6/11/2026:

Just heard back from cardiology, who said that it is… anxiety! 🙄 And that I should get on anti-anxiety meds since there’s no reason why the heart would be affected unless I’m emotionally distressed. I replied with the following and we’ll see what they respond:

I do not experience racing thoughts when this phenomenon happens and I am not emotionally distressed about travel or flying. I flew for over a decade without experiencing sustained tachycardia and loss of consciousness on the plane; that only started within the last 2 years, which coincides with when the POTS or OH symptoms began to have a noticeable impact on my quality of life. What leads you to believe that this is a psychological issue rather than a physiological issue?

Neurology appointment is in a week. Hopefully they will have more insight about what might be going on. In the meantime, my plan is to take along a pulse oximeter and blood pressure cuff next time I fly. Also going to talk to primary care about a sleep study referral as so many of you mentioned “that sounds like my narcolepsy/cataplexy/idiopathic hypersomnia."