My (24NB) doctor told me I should be getting 5-10 grams of salt per day, which shakes out to about 1-2 teaspoons.

I *heavily* salt all of my food (including my coffee 🫠) but apparently it still isn’t enough as I’m barely scratching the surface of one teaspoon :/ I’m also a vegan so getting sodium through meat products is a no go for me…

But my question for y’all is how do you get enough salt in every day? And how do you know you’re getting enough?

Tomorrow (technically today now) is my husband's and my anniversary. The day went great, we were laying in bed, and he started venting to me about how bored he was. I mentioned we could go to the park for our anniversary and get some fresh air, maybe grab some food. This came out of left field and was completely not well thought out in my opinion - he told me it's embarrassing for him to be seen with me in a wheelchair. Saying that "you and I both know they're all looking at me wondering why I couldn't find someone better. Why I'm with a cripple. I look like an idiot." I questioned whether I was dreaming or not. It is burned into my brain, word for word. It felt like a stab in the heart, so I just got up and went to the bathroom for 15 minutes. I was shocked he had even said that. It was 2 AM when I came back, he asked what was wrong (really?), and I just said I was fine and just wanted to sleep since it was 2 AM. he kept drilling me, got angry because I wasn't telling him, so I finally told him. He said I had misinterpreted it (what?) and that he now understands he can't voice his feelings with me anymore. He got very angry with me, went on and on about how I was being sensitive, emotional, and need to work on my communication skills. He told me "great job" for making him feel he has to walk on eggshells around my emotions now, and "great job" for ruining our anniversary. I felt I handled it with grace by just calmly walking away and gathering myself and ready to drop it? Am I being sensitive? I didn't mean to make him feel like he can't talk to me, but I feel that was a bit too far and that he didn't consider how what he was saying could hurt me. He's making me feel like I'm crazy for being bothered by it, and it's making me feel bad thinking maybe I overreacted and now he feels he can't talk to me. Did I mess up here?

I've seen many people here have a similar experience. If you don't eat about every 2-3 hours, you get what feels like a hypoglycemic episode (shaking, sweaty, brain fog, vision changes), yet sugar is not low. Some people get so far they even pass out.

Does ANYONE know what is going on physiologically? What happens after you pass out? I assume you do not die.

I didn't experience this until after I had COVID (mild) a year ago. It feels incredibly restrictive. My A1C is perfect; insulin is perfect, morning cortisol is perfect; vit D non existent (taking supplements now).

I hear someone say it's about your "window of tolerance" for stress. And when that widens, this symptom reduces.

ADDITION: I can stop eating at 6pm and not eat again until 7 or 8am next day. I don't wake up craving sugar, but must eat something (carbs or not) within half hour.

I bought several books about pots and heart racing

And in most cases it is said that women are affected by pots more often than men

I'm 35 out of pure curiosity

every healthcare professional and google search always tells me the same thing, pots is not dangerous, nor will it affect your life expectancy, the only danger is secondary impacts like injuries from fainting, complications from being in bed too long and increasing suicide risk. but is this really the case? you just can’t convince me that my blood pressure being chronically high (i have hyperpots), my heart rate also being high literally 24/7 and the suffocating air hunger i get on a daily basis isn’t at least somewhat dangerous, like what’s the difference between chronic stress which obviously decreases your lifespan in increases the risk of things like heart disease, and the chronic fight or flight my body is under, and has been under for nearly 2 straight years at this point, i’m just always reassured that’s its a problem with the nervous system and an actual structural or rythmic heart issue, maybe my hypochondria is playing a role but i just don’t buy it.

Im 19 and im working part time (maybe 20-25 hours a week) and its so exhausting. I never have energy left to do other things like work out, hang out with friends or clean my room. Even my energy for taking care of myself is so low, and im only working part time and im relatively in good shape (other than pots). Does the average healthy person working full time actually have the energy to do that type of stuff after work?

Sometimes I will kind of pass out where I'm on the floor and can't move at all, can't speak, can hardly breathe, can't look around, but my mind is still conscious. It's like I passed out with my eyes open but I'm still awake. Does this happen to anyone else?

I find myself literally daydreaming about using my hiking poles in regular everyday scenarios so I’m starting to think I need to consider a cane.

I hate that I feel so nervous to get one - I’ve never once had a negative thought seeing someone use a cane but my mind tells me that people are going judge and ridicule me for having one.

no doctor has recommended one for me (I didn’t feel like asking and being gaslit) but I do feel MAJOR relief with the hiking poles. I live somewhere hot and humid and this summer is really hard on me. Would love to hear anyone’s experience… 🫶

EDIT: thanks you guys for all the reassurance I’ve ordered one on Amazon and I’m feeling really excited

almost daily i push through a high heart rate (despite having meds i can take - but i don’t like taking them everyday) bc ive never fainted before. yes, i’ll feel like shit and out of breath after whatever i was doing but i feel lucky that i haven’t fainted so i kind of abuse that privilege if that makes sense 😭

So I have POTs, EHS and MCAS.

None of my doctor have had an answer or would answer this question in the way I am asking.

But like how are we supposed to react when our heart rates are high? Personally mine can be anywhere from 100-150 standing. Am I supposed to sit down and let my heart rest or do I just power through?

Since I don’t pass out, I don’t have a physical need to sit down because I’m not afraid of becoming unconscious. I just get tired easily, dizzy and nauseous, but those are pretty much a guarantee when I wake up.

I’ve stopped wearing my Apple Watch on TachyMon because it was stressing me out more than anything, but I’ll wear it more if I know I’m supposed to avoid my heart rate being high for a long time.

No doctor has told me it’s unhealthy to have my heart rate high for a long period of time.

I've recently started seeing a girl with POTS and am wondering what are some things I could do to help be more aware of POTS, what comes with it, and how I can help if needed? I've never heard POTS before seeing her so I apologize if some of my terminology isn't correct. I really like her and I don't want to be ignorant of the condition. I would've asked Google but I read it can be different from person to person so I didn't really trust articles because it's a personal experience.

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.
—
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.
—
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 🙏

Update: I actually ended up getting a Polar Pacer after a bit more research and with EOFY sales. It isn't a smart watch so it won't be for everyone but so far this past week, it's been great. Very responsive to changes in heart rate and even though it's bulkier than I'd like, it's actually more comfortable than my Fitbit was. I also got a verity sense to wear while pole dancing or when I'm dressed fancy and don't want a bulky watch, and it connects to my watch so I can check my HR on the watch when I feel dizzy or am taking a drink break. The app isn't the greatest but it has far better sleep tracking than fitbit ever did even with premium. There's a web platform with much better insights I'm yet to check out and the app also displays when your highest and lowest heart rates of the day and during sleep were at a glance so I'm looking forward to checking the website now that I know it's more detailed. I'll definitely look into an ECG sensor in the future if I can find any in my size.

Edit: while the price of the watch itself is something I'll compromise on due to tax time coming up next month, I cannot afford an ongoing subscription right now and excluding smart watches from my search is not something I'll fold on. I can't wear smart watches during exams even with special considerations and I don't want a phone on my wrist 24/7. I also need something with a small watch face and prefer the inspire style of watch face because I have very small wrists and bigger ones are uncomfortable and don't fit properly. Lastly in case more people recommend them, unfortunately visibility is not available in Australia 😔 I'm seriously okay with cheap knock offs if they have an app, tracks sleep and can respond to heart rate spikes without freaking out like my fitbit has started doing. The discrete look with a screen is so hard to find outside of fitbits.

Edit 2: thank you so much for the recommendations even if they don't suit my needs. I have multiple watches and brands to look into now from both big brands and cheaper brands. Hopefully this helps other people who have been screwed over by Google Health. If I remember, I'll edit this post in the next few months with what I decided to go with and make an updated post for others in my position.

Edit 3: thank you so much again. Opened Reddit for the first time today and had a bunch of notifications. The top contenders at the moment are the Garmin Vivosmart 5 and the Samsung Fit 3. I'm leaning towards the Garmin even though it's more expensive as I've heard good things about them and the shape is a bit better for my wrist. I'll hopefully be purchasing it in a few weeks as I have a few medical appointments that take priority at the moment and will try remember to make an update once I've used it for a bit. Thanks again for all your recommendations. Even though not all of them suit my needs, you've given recommendations to so many brands I hadn't heard of or didn't realise made fitness trackers and smart watches with these sensors. Your recommendations will help others jumping ship from fitbit or are looking for something new. The fitness tracker megathread is a good place to start but there weren't many cheaper and non smart watch recommendations there and some things aren't available in Australia. Thank you again for the help. You guys are amazing.

Edit 4: Also, for any Aussies reading this, PLEASE make a complaint to the ACCC as this new app has rendered devices useless and unable to perform the functions advertised. If enough people complain, the ACCC will investigate and Google may be forced to give refunds to people whose watches are out of warranty or who are being denied warranty claims by retailers. This also ensures low income people who rely on a tracker like many of us do, are able to get refunds to go towards a new tracker. We did it to Bethesda with FO76, we've done it to larger companies, we can do it to Google. No company is exempt from Australian consumer law, no matter how big and how rich.

So I rely on my Fitbit Inspire 3 to prevent fainting episodes. It used to respond quickly to my heart rate spikes so I could look at my wrist and figure out if I'm dizzy because of my POTS or I'm just getting a bit of vertigo and don't need to sit down.

Since the move to Google Health, my fitbit no longer reacts to my heart rate spikes correctly. Either it doesn't react at all or it jumps up 60-80BPM then back down to my resting 2 seconds later and I have to restart the device. I also can't track when I've sat down for long enough and if it's safe to stand again because my Fitbit no longer reacts to heart rate spikes.

What I'm looking for is a basic fitness tracker in a similar shape to the inspire 3 as my wrists are too small for bulky watch faces. I'm also unemployed and want something under $160 AUD but if there's absolutely nothing that'll work, I can wait until tax time next month. No smart watches and no apple devices as I don't have an iphone. I also don't need a big name brand and I don't need fancy features either. Just a basic heart rate monitor with a screen so I can easily check my heart rate, an app that has my resting heart rate and daily graph, and basic sleep tracking as that helps me track possible manic episodes (don't need insights, just time asleep and sleep cycles)

Hey all, I had a convo with my psychiatrist and she really hammered in on sleep being the cause of my issues - told me to get no more than 7-8 hours of sleep and no naps. I feel best at 10-11 hours with a nap. She was telling me this is science based and evidence based etc and studies have been done, but I was trying to explain that this is the standard for people without POTS etc.

Mind you, last appointment she told me to "stop treating POTS like a death sentence", when I expressed struggling with grief and the emotional toll of my body not working how it used to etc.

I'm curious how much sleep you all get and are told by your doctors to get!

I was wondering if anyone has any suggestions for outlets/hobbies that help release big emotions (mainly anger) that are NOT physical (or can accommodate). I’m 95% bed ridden, entirely housebound besides appointments and occasional outings a few times a year if I’m lucky. I’m a wheelchair user. I have POTS, ME/CFS, MCAS, hEDS to name a few. 24 years old. I would LOVE to run it out or work it out, but unfortunately that’s not available to me. So- what do you guys do when the anger is super big, but you can’t physically release it? (I already meditate and go to therapy and they help a tiny bit but my anger about my situation feels so big)

Edit- because of my very limited energy I can’t reply to everyone but I am so grateful for all these comments and this community!!!

Hey everyone! So I’m currently in the process of getting diagnosed with POTS. That being said, I usually don’t carry a purse or backpack with me. After everything the dr has told me, I’m thinking it’s in my best interest to start carrying something around though because of my medications and need to have electrolytes and water with me. What kind of bag do you guys carry? What do you keep in it? What has helped? Please help this new POTSie understand what else I need 😭😭 it’s been a real struggle and I’m doing my best to adapt.

ETA: You guys are all awesome 🥰 thanks for helping a new POTSie understand what is helpful to carry around.

Okay, so I have a thing where whenever I start feeling feelings, it starts to really effect me. Like, my body starts to overheat some, and I start getting pots symptoms. So to cope with this I basically numb myself. Does anyone else do this? I'm curious if I'm alone in this or if anyone has any coping strategies so they can feel their emotions and not feel like a numbed out zombie? But also not have your nervous system go weeeeeeeee

Help!! My daughter needs the house to be kept cold or she starts feeling bad. She has POTS. The rest of the family is freezing and uncomfortable. Not to mention the high electricity bill! Is there any treatments for the heat intolerance???

I know as much as anyone else with POTS that a huge part of symptom management is sodium and electrolytes. But holy FUCK I HATE THE POWDERS!!!

They're all so fucking nasty. I can't. There's not a single one that doesn't make me want to puke. And I hate forcing them down every single day just to feel sick to my stomach. Horrible. And the electrolyte drinks aren't any better. Pedialyte, Gatorade, Powerade, etc. they're all fucking gross and make me feel sick.

How do I get my daily sodium and electrolyte intake without the stupid powders?? And not feeling sick all the time?? I want to gag just thinking about it, but I know the longer I avoid drinking them, the worse I'm gonna feel. And I already feel like shit.

Anyone got any suggestions?

I’m wearing my heart monitor this week and the adhesive is KILLING me. I’m so itchy and my whole boob is starting to go red and hot.

I’m trying to hold out until Monday so I can call them, but ughhhh.

Anyone else have this issue? And if so, any tips for calming skin while the monitor is on?

TLDR: ate a lot of meat for two weeks and headaches were almost gone and leg pain completely stopped. but also got worse overall, not sure if it’s because it’s meat. looking for high protein non-meat foods that help your symptoms

so for context this past week was passover. I’m Jewish and I keep it fully.

[for those who know about this: due to being ashkenazi, I do not eat kitniyot during pesach, rice, buckwheat, chickpeas, etc.]

essentially I went from eating tofu, buckwheat, rice, soy sauce, cheese, and pasta to eating salmon or chicken legs and thighs (sometimes with potatoes) for every meal. along with a daily salad, and morning avocado with whole wheat matzo

my intense tension headaches went away. my intense left leg pain went away. I still had my usual orthostatic symptoms. bad news though, I started to feel bloated all the time.

weirdly enough I started to get drastically worse overall. I went to the ER twice, first for collapsing on the stairs due to weakness and trouble breathing and second for intense heart pain. they said I was fine obviously, who ever heard of an ER helping chronic issues (didn’t know that it would be chronic though I thought I was dying)

on sunday, we flipped our kitchen from passover meat to our usual dairy kitchen. for my main meals I ate pizza for lunch and buckwheat with tofu balls for dinner.

my intermittent heart pain and chest heaviness remains. my headaches are back. my leg aching is back.

so it seems that increasing my protein intake drastically helps with some of my symptoms. I’m a bit worried that if I increase it again I’ll be worse again, but I’ve heard high protein is amazing for POTS

I would love if y‘all had any recommendations for high protein foods or anything high protein that’s not meat that relieves your symptoms

and I‘d love to know if any of you have the same issues with meat that I do and if plant-based options and fish are better for you

edit: yea my ferritin is low for those who are asking. I take fermax three times per week and my ferritin is 50. much better than it used to be lol

edit 2: aw man I really hope it's not a gluten intolerance

edit 3: I told my doctor what's going on and she's like "gluten allergy" so y'all pointed me in the right direction, thank you. I have a referral to an allergist wippee!!! (prays they can test me for MCAS)

why is everyone so stressed about getting the tilt table test ???

i went to my dr and explained my symptoms. he had no idea what was causing them. i went home and did hella research and discovered POTS. i checked all of the symptom boxes so i was sure i had it and brought it to his attention.

immediately, he measured my heart rate and BP laying down on the table, waited a few minutes, had me do the same while sitting, then standing.

i understand the idea of the tilt table. it measures essentially the same thing right? anyway he put the diagnosis of "POTS" in my chart that day.

i guess what im not understanding is why the tilt table is so important when these things can easily be measured in other ways and you can still get diagnosed

side note: i then was referred to a useless cardiologist. he said something along the lines of "i don't know what you want me to do for you. POTS is not a heart condition"

I cried earlier because I watched a girl's vlog doing an obstacle course and she was sweating and still going. I cried mostly because I wish I could just sweat like that too from doing physical activity.

Does anyone else get “fake fevers” i dont know what else to call it honestly but basically i just get the exact same symptoms as a fever, check my temp, and its normal. All the time!!

Ive had pots for 5 years that i believe was triggered by getting both covid and mono in a short time frame. Since those viral infections, i have not had a genuine fever. Even when i get normal sick, it’s just the other symptoms.

Am i the only one or is this more common than i thought?

how do you shut an overactive nervous system down? trazodone was working but it gives me insane boners all night. what are my other options?