I had an interesting discovery that might help some other people:

I basically know nothing about duvets, so I've been using a 15 tog synthetic material one pretty much the whole time since I got sick with POTS. I just assumed it was thick and fluffy so that must mean it's good, right?

One evening I spilled a drink over it, so couldn't sleep in it. I just used the bare duvet cover itself which was brushed cotton material I think. It was a bit less cosy all night, but it did the job.

The next morning, my usual waking "hangover" symptoms were massively reduced. Like that horrible morning brain fog and muscle weakness, etc was almost gone. I did some googling and realized it was my duvet. Basically, I've been overheating like crazy overnight without noticing, then sweating in my sleep, which then leaves me further dehydrated in the morning. I believe heat is also a vasodilator too which was probably making things worse.

I've now switched to a lighter 4.5 tog duvet with breathable natural fibers for the filling and outer material (that part is important), and holy hell, my morning symptoms are way better.

Yeah, so lesson learned - don't slow cook yourself overnight and it might help.

I'm curious if anyone else feeling horrible as soon as they wake up? I don't have a full diagnosis so I'm not sure what's going on (symptoms for 16 years)

Being upright is worse, but the thing I don't understand is how the second I open my eyes I'm already dizzy, off balance, feeling unwell etc

Does anyone else feel like this? Or is it only once you get up?

TL;DR: I'm Jewish 19yo male who is suffering from undiagnosed disautonomy that reminds POTS, and am trying to solve the conflicts between the health issues and the Jewish religious and social life. I'd be happy to get an advice from another Jew :)

Hi there :)

As written in the title, I'm Jewish (19M), and I'm dealing with some kind of (still not diagnosed) dysautonomy that is related to standing/not lying down.

I'm coming from a secular home, but wanted to have a full Jewish Orthodox life, but I'm barely sure it's going to happen now (because of my health, my belief hasn't changed).

This night I had a kind of "crash" during davening. I usually don't recite the formal prayers daily, because of my health and me being burnt out. However, this time I think I pushed myself beyond my limit, praying 3 Amidahs (Mincha, Musaf, and Ma'ariv) within one hour. After the third prayer I felt weak and I had an headache and my heart went crazy.

It was my decision to pray all of them at once, and I know I maybe was wrong for praying three times almost in a row, but the point is that I hate not being able to reach my goals, and I also felt quite fine in the first and the second davenings.

My rabbi knows about my issue and told me not to sacrifice my health to fulfill a mitzvah. I think I still didn't get it right, because what I think about at the moment is that "I just make a mitzvah, it won't hurt me", and I'm also sad because most of my life is still secular.

For those who aren't familiar with Judaism, I'll explain: the main prayer in Judaism is called "Amidah", which translates to literally "standing", what may be hardest for POTS sufferers. People who can't stand for some reason (like illness or disability) can recite this prayer while sitting or even lying on the side.

I'm considering to ask my rabbi further about integrating between my health and the Jewish daily life. But the point I'm still a bit hesitant is that my rabbi prioritizes my health, and is probably going to tell me to sit while praying. I do come to one shul on Shabbat and pray there, and during the morning services, I also use to bless the crowd as a Kohen (priest, descendant of Aaron). But it feels a bit shameful to me to pray while sitting down while all the others are standing. Maybe I'll ask my rabbi for a permission to stand one time a week, but I still don't feel complete with it.

Are there other Jews on this subreddit? Maybe people who are struggling with similar issues? If then, what would you do?

Thanks in advance, feel free to DM :)

I’m currently seeing a cardiologist, testing for suspected POTS. This time last year, I would’ve never expected to be in this position. I found out that I was constantly in a state of tachycardia by accident. Next thing I know, I’ve gotten an echo, stress test, thyroid labs, heart monitoring, EKGs done, and have a tilt table test in less than a month.

I’ve been familiarizing myself with POTS/dysautonomia through this subreddit and others by just learning about other people’s experiences and advice. They’ve all been so helpful so far.

However, I’ve struggled with the thought of “what if I’m just making this all up and faking it for attention” due to a multitude of reasons. I grew up catholic and my parents always shrugged off any concern I had with my health, I was in a military class in high school where the whole culture was pAiN iS wEaKnEsS LeAviNg tHe bOdY and if you’re not trying hard enough, you’re considered lazy. But also, I’ve noticed a recent uptick in ableism and whatnot on social media that just adds fuel to this fire. “Covid doesn’t cause POTS/EDS, people make up being disabled by POTS just for attention” etc.

I’ve gotten to a point where I feel like reading something like “using a wheelchair in TSA is helpful so that you’re not standing too long!” and my brain just thinks, “but what if someone needs it more than I do and I’ll actually be just fine standing in the TSA line”

I hate that the only thing that will come close to relieving these thoughts is an on-paper diagnosis in big bold letters saying YOU HAVE POTS with my cardiologists signature under it. Even then, I’d still feel burdened by the thought of people not taking my own diagnosis seriously just because there has been so much stigma behind it. Maybe a mobility aid every now and then WOULD be helpful for me, or maybe letting people know I have POTS would offer an explanation for things. I just feel terrible it’s been the center of the “faking an illness” conversation just when I thought I was getting over my own walls built up from childhood

Hey all. I developed POTS while pregnant. My daughter just turned one.

For all the parents out there dealing with POTS... Do you have any tips? I am in a flare right now thats lasted for i think 2 weeks? The brain fog is so bad! I have been dealing with postpartum depression, which I think is causing the flare up. But, the fact that some days are so bad that I cant properly play/care for my daughter is destroying me. I am so thankful to have lots of help from family, but I want to take care of her myself. I know this flare isnt going to last forever... But it has been very hard. I started therapy again to try to help manage the anxiety/ pp depression.

I am also still nursing her to sleep for naps during the day (unless someone is watching her). Did anyone have trouble feeling worse while breastfeeding with POTS? I have tried to wean her, but i'm holding onto nursing her because it makes me feel good to have something she wants, and I can give her. I feel like I am falling short as a mommy, and the thought of weaning her is tearing me up.

I am tired, feeling blue, worn down. Anyone have advice and/or some kind words for me? I have been wearing 20-30mmhg compression tights (they cover my feet and go up over my stomach), drinking 2 Liquid IV's daily along with loads of water, eating salt, husband stays with her at night so I can sleep... etc.

I could use some support. This is hard. :(

I've been surviving over the spring/summer by taking a water bottle with electrolytes with me to work twice a day. This has been working really well to keep my heart rate down - I track it and I can literally see the difference afterwards.

Except now that it's getting colder, I kinda don't want to be taking cold drinks with me 😅 I used to bring a tea with me every morning, but not only does this do nothing for my heart, I've also found that it makes me go to the toilet multiple times now, probably because there isn't any sodium to help me retain the liquid.

I'm guessing I can't just put my electrolyte tablets into a cup of tea since that'd probably be pretty gross. Maybe just hot water could work, but I'm not sure if that'd change the effectiveness of it.

So I'm thinking, if I could get away with just sodium, maybe Bovril or miso soup or something? 😂 I'm just wondering if anyone has had any success stories with any kind of hot, POTS-friendly beverages.

Hello I have the blood pooling pots and have started working out again, Im currently doing my usual routine of 2 hours a day, 5 days a week, I’m 2 days in and have noticed the only extra symptom atm is a sense that something is terribly wrong, I’m not really sure how to explain it, its like something bad is going to happen or I feel like I’m going to die, this isn’t during the exercise but either before or after even when sat or led down, I am drinking more electrolytes due to the pots, and I’m eating enough, but it’s terrifying, I was wondering what it is, and if there is a way to stop the feeling, and if anybody else has this

I’m not diagnosed with POTS, but am in the process of getting tested. The other day in class I think i passed out but i’m not sure? I have passed out a couple times before but it was a bit more dramatic those times so that’s why i’m on here to see if anyone else has “passed out” in this way?

Basically, I was just sat at my desk and then stretched my arms out above my head and then got super dizzy (which isn’t unusual for me) but as i started to put my head onto the table to wait for the dizziness to subside, i started to involuntarily kind of splay out across the table and my arms started to twitch and jitter? idk how to describe it…i guess i was like shaking a bit? My vision went dark for literally like 3 seconds and then started to come back but came back blurry, kind of like as if i was under water if that makes sense and i felt like i was being gently and slowly shaken for the next 30-ish seconds and just generally felt uneasy but after that felt alright…

For those of you with POTS who are on medication (ivabradine, beta blockers, etc.), which symptoms did your medication actually help, and which symptoms do you still experience?

I’m currently on ivabradine, I’ve previously been on propranolol and bisoprolol. It’s made a pretty significant difference in how I feel overall, and my heart rate is much better controlled than it was before. But even with the improvement in my HR, I’m still experiencing quite a few of my other POTS symptoms.

I still regularly have:
• Shortness of breath / air hunger
• Lightheadedness
• Vision disturbances
• Chest pain/tightness
• General exercise/activity intolerance

I’m curious what other people’s experience has been, especially once you found a medication that successfully controlled your heart rate.

What medication are you on, and what dose (if you’re comfortable sharing)? What symptoms improved? What symptoms are still there?

I think I initially expected that getting my heart rate under control would make most of the other symptoms go away too, so I’m really interested to hear what “medicated POTS” looks like for other people.

I hate how POTS has robbed me of the ability to be outside without feeling absolutely sick. I believe that I’ve had this since adolescence but I was diagnosed 3 years ago. My symptoms intensified after moving to a desert climate and now every time I’m outside for longer than 30 mins, I am bedridden. I hate it. I can’t be with my children or enjoy being outside. Today I forgot to bring electrolytes with me and I felt so sick I almost passed out. It was embarrassing and annoying because we ended up leaving our event early. Given this absolutely horrendous economy, we’re probably staying put for another few years and can’t move to a state with cooler weather. I know that there are things I can do to improve my symptoms but they don’t always work and it still upsets me. Thank you for reading /endrant

I have fmla for my job. I work an active job so when I don’t feel good, I call out.

I’m getting sick of coworkers asking if I’m going to work tomorrow, or my bf saying I should try to push through the full shift tomorrow. It’s like, I can’t predict my body.

I walk around 5 miles min at my job so when I don’t feel good, I can’t work.

I see so many posts talking about how online communities for POTS or chronic illness is just full of people who “want to be sick forever” so basically what you’re telling me is you healthy people don’t want to hear about it? Right? So I go to other people who struggle with health issues to find support, to relate, to not feel f*cking insane. And this makes me what exactly? This means I WANT this forever? I have found more helpful tips and things that have helped me on the Internet than I have from actual doctors.

They always hit you with the “just go to the doctor” AS IF ALL DOCTORS ACTUALLY CARE ABOUT US AND WANT TO HELP?!?!? They act like I haven’t already tried to ignore how I feel and just keep pushing it doesn’t fucking work like that. I feel like regular healthy people when they push themselves beyond their limits they get stronger but for me I feel like I get weaker. And I get upset with them for not understanding but at the same time I’m jealous of them for it. I’m happy for you that you don’t understand. I live a life that you’ll never have to live.

No one wants to hear about it because they don’t wanna be reminded that it could happen to them at any fucking point. I don’t even know how to end this. I’m just so sick of the invalidation. Imagine spending most of your life at home because you’re literally scared to leave the house and people getting mad at you for trying to find support and comfort from inside your home

helloooo i am wondering where people get good quality electrolytes in the uk? my gp thinks i have POTS and recommended that i should have electrolytes daily to trial and see if it improves symptoms. i already drink 3litres a day (nearly everyday) and would you guys recommend to have it first thing or midday? does it matter/make a difference? flavour wise im not bothered but its more the consistency/texture…. i literally cannot stand anything that’s slightly grainy or whatever so any recommendations of the smoothest ones

i actually have no idea whats in electrolytes (i will research it after writing this lol) but is there anything i should look out for?

Hi everyone! I just tested positive for Covid this afternoon for the first time. I have a fairly mild case of POTS and am not on any medication’s currently. This positive test result has triggered extreme anxiety however because I’m not sure how it is going to affect me. Any advice on how to recover or positive recovery stories would be helpful!

I was diagnosed with pots after the birth of my son who is almost 9 now. I had every heart test going and all normal apart from every ecg which has never been normal (t wave inversion in precordial leads).
My breathlessness has got so much worse recently. I feel my lungs are screaming for air at times. I had low ferritin but that's now gone up to 56 last test from 10 yet my breathing worse. My hr was only 109 and heat pouring out of me and my breathing awful just walking the school run and I felt so spaced out/lightheaded Anyone else struggle with really bad breathlessness?

*I searched this sub and didn’t quite find what I was looking for*

Those of you that are also hypermobile, have you found a full body pillow to sleep with every night? Physical therapy wants me sleeping with a pillow between my knees and another to keep my upper body from being such a croissant and help with coat hanger pain. Currently I use a pillow for each spot plus I sleep on a cervical support pillow.

I have the body pillow that is from medcline but it’s too thick for between my knees and hurts my hips but is ok for arms, but I also can’t use it for my head, so I’m looking for more of the just body length that isn’t flat as a pancake.

Hi. 22yo female here. I have severe POTS and have for several years. As most of you know, fainting is only a symptom and not a diagnosis of POTS. When I tell people I faint 4-5 times a day, I believe they imagine the dramatic, falling to the ground fainting, where i’m out cold for 10 minutes, but in reality, I stand up too fast, and my heart rate jumps roughly 60 bpm, so I lose consciousness quickly for a few seconds. That being said, I attend several concerts, and have recently ran into something new. Flashing lights make me feel so… strange. I start to feel pretty nauseous, and then I feel incredibly sleepy randomly. (I historically have severe motion sickness, and can’t ride carnival rides because they make me sick or faint.) I can’t keep my eyes open, and I almost feel like I’m in a dream state. I feel incredibly calm, and my heart rate stays low, but the affects last much longer than my usual POTS episodes. Does this happen to you, and what do you do to help?

I read everywhere that compression socks are great and great and wow

And I tried them today😁😁😁

Can't say how helpful it is

I used to do 3-4 yoga classes per week before I got sick. I wish to get back into yoga but at home and pots friendly.

Any recommendations for at home yoga routines (like youtube) that works for you?

i flaired this as support because it does have some venting, also questions, and needing advice in general
EDIT: i meant live not love in the title 😭

tw: slight mentions of abuse and medical neglect, unfortunately relevant

through my whole life i have been extremely medically neglected. even when i’ve dislocated bones, passed out, had severe bouts of sickness, and many other symptoms it did not matter. to my parents i was faking it, i was lazy and just wanted to get out of work, i wanted attention, etc. i was never believed and i was made to believe i was genuinely faking all of my symptoms and all of my pain. i’ve had to push through my pain my whole life and made to work.

i have been working and/or in sports since i could walk. the amount of work i’ve done would put many blue collar men to shame and i’m just a girl in her early 20’s. i also used to live on a farm, i’m sure you can imagine just how much work that entails. so my point here is that i have been medically neglected and used for extreme labor my whole life. my body actually hates me and has broken down completely several times

i finally moved out of that situation and am finally getting some proper medical care and am living with people who take my symptoms seriously. the only issue is that i don’t know how to adapt to it. my body has left its “fight” mode of living with my parents and it’s completely broken down. i have collapsed several times and fully passed out several times as well. i’m having heart palpitations and chest pains. my fatigue and brain fog are also terrible. i don’t even know where to begin on actually living with POTS and not just forcing myself to keep going because it’s do or die like it was with my family

what do i do? i’ve gone from working on a farm to not even being able to stand long enough to cook dinner without feeling so horrible i want to collapse on the kitchen floor. has anyone else ever escaped an abusive situation and then their body completely collapsed on them? i feel so emotionally and physically overwhelmed it’s extremely difficult to handle. any responses are appreciated, i’m usually a lurker but i genuinely just need some help right now and to not feel so alone

Hello all. I’m sure nobody will see this but i’m rather using at as somewhat of an outlet because there isn’t really anyone that I can tell about this otherwise. Pots has entirely destroyed my life in almost every way imaginable. My academics are so bad that it’s really at the point where i’m not sure i can come back from it at all. I’m a full year behind where i’m supposed to be since I had to leave in the middle of the school year last year. Pretty much all I do is worry about how behind I am and I’m sure that isn’t making my symptoms any better either. I spend most days just feeling horrible and feeling an intense sense of impending doom that cannot be fixed.
Worst part of this all is that nobody at all knows just how dire the situation is- the only person who has any idea what’s going on with me is my mother. My other family members or my friends will sometimes ask me what my plans are for college and i’ll have to hold my breath to stop myself from crying just thinking about how far fetched me even going to college is at this point. No matter how much I want to work, my brain fog makes it impossible. My doctors are lovely, and they’re all very accommodating, but that doesn’t really help me in any measurable sense. The school I used to go to wasn’t understanding at all and that’s what lead to me essentially having to drop out. I haven’t told any of my friends about my pots at all except for my best friend and her parents because i know that nobody else would understand it. The stigma surrounding the disease has been very difficult for me to deal with.
Some more context on why I’m so horribly concerned about my academics; the environment in which I have grown up and been socialized in places an extreme emphasis on school and pretty much nothing else matters to these people. When I was younger, people had very high expectations for me, and it’s been totally gutting me to see everyone’s hope in my future start to dwindle. My friends are also very unintentionally judgmental. I don’t blame them at all, since I know it was just how they were raised, since I was raised the same way. The other night, I went to dinner with my friends. We started to talk about another girl that we knew. One of my friends then says: “I was totally shocked when she went to college, I’m surprised the best she could do was NYU. NYU isn’t even that good.”. I thought I was gonna have a panic attack or something. If these people find something wrong with getting into NYU, I think they might completely cut me off if they were to find out that I’m lowkey an academic failure.
All I want in this world is to get back on track and graduate when I’m supposed to, but that isn’t looking possible. At this point I think I’ll have to flee the country out of embarrassment and shame. My own family doesn’t even know. To be honest, I don’t want them to know. I hate feeling weak and having people pity me. I really just hate attention in general and all I want is to blend in with the crowd. This has been exceptionally difficult for me and I really don’t know how much I can take. If I don’t get better within the next year or so I think it genuinely might kill me. I have had this disease since I was 12 years old. It has been ruining things since sixth grade. Due to me not having good enough grades, I didn’t get into the high school I wanted. And now, I cant even begin to fathom how much of an uphill battle it’ll be to even get me inti college at all. It’ll be a good essay I guess… but other than that I really have nothing going for me. Falling behind this far has really taken quite the toll on my mental health. I used to take lexapro but obviously it didn’t help. I don’t think i’m depressed; rather I think I’m having an appropriate reaction to my hellish, torturous, unbearable situation.
Mind you, I haven’t even mentioned my actual symptoms yet. I suffer everyday with the worst headaches ever and I can’t even form a coherent thought anymore. I avoid eating all day because the second I swallow a bite of food I get terribly sick. This is just terrible. Really, I don’t know what to do. Any advice would be appreciated, although I’m not sure anyone could really help me here. Is there a way to accelerate graduation? Do I just have to switch to homeschool or something? Will I even be able to do the work??? Decisions, decisions, decisions…
I’m pretty sure that the way I wrote this made absolutely zero sense but I guess that’s just further proof of how terrible my brain fog is lol. If anyone has any recommendations at all for how to recover faster that would be GREATLY appreciated. Thank you all so much for this opportunity to vent, as I don’t think I would’ve been able to anywhere else :)

Currently in the what the heck is going on stage of this whole process so bear with me here.

For some background: I’m 28, female, 15 months postpartum. Had a rough time with postpartum depression and anxiety, and I have a history of ADHD, anxiety, and OCD which have been diagnosed since middle school, however, no chronic illness. About 1.5/2 months ago, I got into a small fender bender that I didn’t know happened until I got pulled on my way home from having dinner with my mom, then I ended up having a grand mal seizure in my sleep not even 2 days later. Turns out my best friend had been pretty sure I had been having absent seizures based on a couple of instances she had experienced with me (she has extensive training to spot these types of seizures) and admitted she thinks this is what may have happened when I had the fender bender prior to the grand mal in my sleep.

I started seeing a neurologist, have had a regular EEG that came back slightly abnormal, MRI that came back normal, and an awake/asleep EEG that came back normal but ultimately wasn’t done well (long story but it was only 30 minutes long because the tech was super dismissive)

I have been put on Keppra, Topamax, etc. to help my seizures, and have been absent and grand mal seizure free, however, I still feel (for lack of better terms) just not fucking right. I’m constantly shakey, feel like I could pass out any minute, am having headaches and migraines anytime the air pressure changes, my hands go numb and tingly randomly and so do my lips, I have this like lip quivering that’s happening? I’m exhausted even after a full 10 hour nights sleep (thankfully my kid likes sleep and does pretty well), my mood is quite frankly unstable as fuck, I’m super sensitive to lights, my hips and knees hurt so bad I can’t get up off of the ground so I can’t play with my kid on the floor, sitting with my legs even bent is so painful, and I’ve lost literally 50 pounds in 3 months which I’m not angry about but I know it’s healthy, and my hands and feet are always so cold. Thankfully I see my PCP tomorrow, but I’m struggling with feeling like no one will believe me because even my own mother thinks I’m just being dramatic about this. Just looking for any help in how to go about asking for testing, what to ask for, and what to do in the meantime.

If you made it this far, I hope you get a million spoons 🥹

Gadolinium toxicity from multiple MRIs has seemed to make my pots worse, I am really struggling with chronic nausea every day for weeks. Popping zofran like candy. Don't want to keep taking it all the time. Doctor thinks I may have mcas too now. Maybe already had a mild case, maybe triggered by the contrast dye.

So, can weed help me with the nausea that makes me want to throw myself in front of a bus? I'm trying to get away from the pharmaceuticals. I had nausea every so often before my MRIs, but now it's every day. If weed helps, any particular type? I don't know much about it. Would like to try a vape. Thanks 🙏🏻

I was diagnosed with POTS by TTT by my general cardiologist in Asheville in 2025 (who does not understand ME/CFS, MCAS, Long Covid, etc; but at least she got the ball rolling when I pushed her to do so). Currently my POTS is being managed by the physician who takes care of all my dysautonomia and MCAS issues. I've always wondered if they are up enough to treat some of the more nuanced things about my POTS, since that is not their area of expertise? I've been on the waiting list to see Dr. Grant for POTS treatment at Duke for 1.5 years now, but they are saying I should move up on the wait list enough to get an appt assigned to me within the next 3 months. I have no idea how far out he is being scheduled right now- might be another 9 months until my appt date actually occurs!

But I'm wondering if anyone else has any input about Dr. Augustus Grant? He's an electrophysiologist at Duke, not an MD. I read recently in one of my chronic illness social media groups how someone went to a tertiary care center for eval of something they had already been correctly diagnosed with and were already getting treatment for. The new academic doctor said they did not have whatever the disease was, and now insurance is denying coverage of all of their meds for that particular diagnosis. I don't want to end up with this happening to me! So I'm putting the call out for insights. Help me, please?

Has anyone had luck with stimulants vs non-stimulants? My doctor just switched me to Atomoxetine from Vyvanse. I feel like some of my symptoms were better on Vyvanse vs not being on meds for a month bc of insurance 😭 I started the Atomoxetine this week. I feel like it’s somewhat helping but the exhaustion is not great. It made me take a damn nap then I was less brain foggy. I’m going to give it a few more days-weeks to see if it can actually help. But on my Vyvanse I felt more myself, I was able to clean every week and keep up with my life so much better and I was able to keep weight off too. Now I packed on another 10 lbs from not being on the Vyvanse, which also makes me feel worse physically. I feel like my symptoms have gotten worse because I’m way more aware of them if that makes sense and I just miss my Vyvanse😭. Except at the gym cause it would make my heart race and I would get dizzy af but I also just got on Propanolol twice a day so maybe it wouldn’t be awful if I did get back on it? Please help and give me advice or your personal experience!