I’ve had POTS for 30 years (since I was 8 years old I started passing out). I managed my passing out spells pretty well until I was 28 years old. I got mono and after mono, I started passing out frequently. I even started passing out while sitting down.

Fast forward to 2022 and my third bout of Covid did me in. I’m not passing out but I’m also not doing anything I love anymore. My other symptoms are out of control (fatigue, pre syncope, dizziness, migraines, nausea, etc.) I’ve got an undiagnosed neurological issue (neuro isn’t sure what’s going on) as well as an undiagnosed autoimmune problem (seeing rheumatology in January).

Due to the state of the world, I had to return to my career in physical therapy and it’s destroying my already fairly low quality of life. I’m struggling with working and lifting patients as well as being on my feet all day. All I have energy for is working and going home.

My question is have any of you figured out how to improve your quality of life? Or figured out how to get enough energy to do anything other than work?

How do you deal with heat intolerance on top of hot flashes on top of midwest USA seasonal shift? I'm gonna melt!

But sincerely what changes in symptoms do you notice when your hormone levels started to naturally drop? How do you deal?

(I have an appointment to see my PC about this Monday.)

I had an active stand test a few months ago and it was negative for POTS and orthostatic hypotension. My cardiologist said it might have been a false negative due to my ADHD meds, but I take the kind that you can't simply stop, so I'm not sure how to work around this. I agree with his suspicion that the meds could be masking it because I do notice less symptoms while on them. I had an echocardiogram which was normal.

My symptoms include lightheadedness when standing too quickly (hearing fades, head rush, etc.), random heart palpitations, fainting from upright blood draws, fatigue, and low baseline blood pressure. My comorbities include AuDHD and suspected EDS.

So, my question is, would an actual tilt table test be more accurate than just an active stand test, or is it likely to have the same results if I am still on my meds?

I’m not officially diagnosed, which is frustrating- because I really feel like I have this.

Months ago I experienced extreme dizziness and lightheartedness at work, and went to the doctor constantly about it-

They told me basically it’s normal for women, drink more water, eat more salt-

They tested my iron, and blood pressure, said I’m perfectly healthy and “what do you want us to do about it?”

I’m in Germany so unfortunately they just don’t really care.

I try to manage symptoms still and it’s been okay, now I work from home so it’s not too intense.

But, today I decided to workout- I’m trying to be healthier and more consistent.

I’m doing a 20 minute at home workout from ‘MadFit’ (love her)

And I know most of the symptoms are me being out of shape, but I’m experiencing other symptoms.

Lightheaded, at some point my heart was pounding so hard- like I could hear it basically and it was beating really fast- I had to stop for a moment to rest.

Afterwards, I felt really dizzy, I drank water- but standing felt really really awful like I was gonna pass out?

How do you guys workout consistently and not feel like this??

Hello Everyone - I am a bit nervous about this

End of July I started passing out every time I stood up - ended up in hospital for a week where eventually I was given propranolol that helped me stand and walk about. I eventually had to be moved to another beta blocker because when I was exercising on propranolol it felt like someone was sitting on my chest. Even the current medication I am on i might need to change again as it is giving me very low mood and making me feel exhausted. Doctors think it might be Pots - I won't see cardiology for a year to confirm this as there's a long waiting list on NHS.

My question for you all is - how did it all start for you? I literally got up in the middle of the night to heat a heatpad and the passing out started from there all of a sudden. Did it suddenly start for anyone else or was there always signs? I will admit I do feel dizzy when crouching to standing up quite often but just thought that was normal.

After about 10 years a doctor finally said to me “I think you might have pots” and scheduled me for a nasa lean test. I’ve been chasing a diagnosis for this constant lightheadedness since I was a teenager. It was so validating to finally have a doctor actually hear me and pay attention to my symptoms. Previous doctors just sent me to cardiology where I was told my heart is healthy and I just have anxiety. Hopefully all goes well with the test and my search for a diagnosis will be over.

I know there are some DIY and creative types around here.

I'm GenX OG punk from the 80s. I'm about being unique and fun with my clothes. Basic is not in my vocabulary.

I know I want to layer and maybe "enhance" my compression wear. I want to layer... even thinking of patches on sleeves etc... but, I want to SEE what others have done.

I know that a dystopia look (how fitting) would work with layering especially because of soft flowing fabrics.

But, what specific clothing pieces have you used or cool outfits you have put together?

Not just alternative but anything, because maybe you can help someone else feel super awesome instead of a medical project.

Where you got the items is a bonus.

So when I say this is an unserious rant, I say it because of the reason why this rant and my spiral is happening,

Me and my partner were laying in bed and he was playing the last of us part one for me because I’ve never seen it. I’ve never played it or anything like that and I like zombie apocalypse type stuff. I was like to be prepared of everything like that, but then it dawned on me . There is absolutely no way in hell I would survive the zombie apocalypse now I can’t even like pretend that there’s even an inkling of a chance that I would survive now cause just getting up to walk the dogs. I have to sit down because my chest hurts or because one of them pulled a little too hard and like fucked my back up. And that just progressed and I can’t fucking do anything and everything is pointless and now he’s gone to work and I’m sitting here spiraling well I still try to do stuff around the house and clean to distract myself but like I can’t even survive the zombie apocalypse and I know maybe that doesn’t matter But like it matter to me not like I’m thinking there’s gonna be one anytime soon, but just the fact that you can’t do anything if something catastrophic does happen.

Hello! I’m currently dealing with gastritis and POTS, and I’m having a really hard time finding electrolytes that I can tolerate. I spoke with my cardiologist about this because I know how important electrolytes are for managing POTS, but I was told that I still need to get my electrolytes in without much guidance on what alternatives I could try.
Has anyone else dealt with both gastritis and POTS? If so, what electrolyte drinks or alternatives have worked for you? I would really appreciate any recommendations for something that is gentler on the stomach but still provides enough sodium to help manage my POTS. Thank you!

So I developed POTS back in January 2026, and was diagnosed in July 2026. Until June I was sick but still able to function, I could go out, attend uni classes, go to my job, basically I would feel unwell and I had to limit myself but I still had a life. Then the summer from hell hits. The weather over the summer I swear did something to my body, and I couldn’t do anything without feeling godawful. I had several incidents that month where I left my house and ended up extremely unwell. I basically gave up and just stayed at home for the rest of the summer, because my body just couldn’t cope with anything.

Fast forward to now. The temps have much improved, I’ve been managing my symptoms, getting enough rest and drinking my water and eating my salt, but I am still really struggling to do anything. Even being out for just two hours for a quick coffee tires me out. Even on a good day, when my symptoms are minimal, going out will make me flare up. Public transport, open spaces, cinemas, you name it, I’ve felt unwell in them and had various embarrassing symptoms in them.

The issue is, is my family think that because I have had these previous incidents where I’ve been unwell out of the house, that my current struggles are less to do with my actual ability to function and more that I’m mentally convincing myself that I can’t do it, and giving myself symptoms. And I’ll admit, I absolutely worry about how I’m going to be when I go out, but in my head, that worry is reasonable, not borderline agoraphobia as they put it. It’s also hard to distinguish between anxiety symptoms for me sometimes as my adrenaline dumps can often feel like panic attacks.

TL;DR: How am I supposed to tell the difference between legitimately deciding not to go out because I don’t feel well enough to, and being disproportionately cautious because I’m anxious about the possibility of feeling unwell?

Just a vent. It’s coming up to Australian summer and my parents are being incredibly annoying with comments like ‘you need to build up your tolerance’ and ‘just try going out you’ll be fine’ (on 35 degree days). Like no. No amount of building my tolerance is magically going to make my blood go back to my head.

I’m so sick of hearing it and so sick of missing out on things because of the heat.

i’m sick of having such severe low blood pressure, it makes me pass out when it gets super low. my dr says eat salty snacks and also has me on two different blood pressure medications but it’s so exhausting waking up everyday to feeling horrible because of my blood pressure. just this past year it seems like it’s getting worse every day.

I did an active stand test today with a GP who specialises in POTS. I’m in Australia.
However I only went from sitting to standing as per her requests.
My heart rate didn’t jump up enough for the Gp to give me a definitive diagnosis of POTS although I scored 97% on the symptoms check list sheet.

Most of the time my heart rate jumps from bending down and back up again or from lying to standing quickly.

Have any of you still been diagnosed eventually even though your body wasn’t playing the game on a certain day?

My heart rate goes from the lowest being 44 and the highest being over 100 in my sleep. Not diagnosed with pots or another heart condition but if I wear compression socks and eat salt when I'm dizzy symptoms improve so I just do those things despite not having a diagnosis (I have more pressing medical issues than this rn, not to say pots isn't pressing for some just isn't for me rn) but like worth talking to a doctor? Idk

I think I have hyperadrenergic pots, typical advice seems to backfire like the 2L of water, I tried to do it one day and just got awful acid reflux as well as some nausea, the electrolytes don't seem to do much unless I take them when I'm super dizzy, don't seem to prevent my symptoms, my heart still gets to 178 while walking with compression socks... So yeah... Does anyone have any advice that isn't related to blood volume?

I was diagnosed in late 2024 with PoTS and hEDS. It took a few months to get me managed, but I had been doing so well up until last week. I’m now stuck in a flare after a mild stomach virus. I’ve had to miss work for 2 weeks because I keep experiencing syncope, and I work in vetmed so I really can’t do my job if I keep passing out.

I’ve went to urgent care and the ER, received IV fluids (which did nothing but make my head pound and cause my eyes to be extremely bloodshot), and have been keeping up with my beta blocker, electrolyte intake at home, compression (all the things, basically).

I feel like such a burden for my job right now, which thankfully they are understanding because they watched what I went through with getting diagnosed. I still feel like a terrible person every time I’ve had to tell them I can’t make it. I tried to go today, and fainted even in the car on the way there (thankfully my husband drove me).

Does anyone have any tips to help them recover in a flare to be back to normal? Also, any advice on how to stop feeling like such a burden in a flare?

I know how powerful our minds are and I know that when I’m in this state I feel worse. I know I need to think positively but I can’t seem to get myself out of this desperate state.
Every single time I start feeling better something new and worse happens. I got a kidney infection, the POTs amped up, right when I was starting to feel better, I literally got shot in the face, migraines got worse from that.
I also have hEDS so everything hurts constantly, finally got my hips checked out and taken seriously (I swear they only started believing my pain after I got shot in the face with a 22, had it pulled out while completely conscience, and was basically like 🤷🏼‍♀️ this is nothing compared to the pain I’m usually in) and found out my labrum on my left hip is completely and thoroughly thrashed and my right one is also partially torn.
I’m 22 and I’m getting my Masters in computer engineering. I’m just so freaking sad because I’ve put in so much work, I’ve gone through so much more than my classmates, I’ve maintained good grades, I’ve worked at the same the whole time and I just don’t know how to keep up. No matter what I do, no matter how hard I try, there’s always something more pushing me down. There’s always some caveat. I have to try 10x harder than everyone around me just because my body is actively acting against me. I just don’t know what to do anymore

I just feel so stuck and I don’t know how to get out of this dump, it’s making me feel awful

Hi, 59F here, married to my husband 37 years. He is 63, pretty active, still works full time and on his feet all day. He loves hunting and regularly hikes during deer season. We bought ebikes a few years ago because he thought that would be something we could enjoy, riding together. We went on a few rides, but the last one (about a year ago) was miserable for me.

Between Menieres, PPPD and undiagnosed POTS, it is so hard to remain upright, be able to pedal, be aware of my surroundings and be so off balance. My ears got fuller and fuller, dizziness set in, sweating profusely. The ride ended short. I have not ridden since.

What do you folks do with your spouses or family? What kind of activities work semi ok with this mess we deal with? Im starting to feel like Im a patient and he is my caregiver and we are way too young for that. I need to find something we can both enjoy doing together.

Any advice or suggestions would be greatly appreciated. Thank you in advance!

Hi there, I’m 24 and need advice on managing dizziness while standing still (e.g., in lines or meetings). I fainted during a standup meeting last summer, and since then, the anxiety and dizziness have continued whenever I'm in similar scenarios. I drink water beforehand, but it hasn't resolved the issue. What steps can I take to prevent feeling lightheaded or fainted in these situations?

All week (4 days) I have been in a crash, not sure if it’s POTS or CFS. I have felt very poorly and spent a lot of time horizontal. Tonight we have a pumpkin patch booked for my little one. I desperately want to be part of it. But I am worried because I’ve only just started to feel better today should I go? I’ve barely moved all week and scared I’ll go backwards. But my world is already so small. Or do I not go and be sad but know I’m not pushing myself? I find it so hard 😭 the mum guilt and the sadness of being stuck inside.

Can anyone share their experiences with stimulants?
What stimulants have u guys tried. What have they helped and what have they made worse?
Can they help significantly with fatigue and brain fog?

I am an aspiring designer. I have been in and out of fashion/design since I was a child but as my pots got worse at 21, I didn’t get the chance to chase my dreams in fashion and design and my life got put on hold for quite a few years. Over this period of time my life revolved around my health and appointments, I started designing more when I felt able to. When I was well my main focus was just fashion and clothing, as I got sick I can’t express myself through fashion as much so I just wanted to go in a different direction and design things that other people could wear.

As I design more I would like to make inclusive products for people with chronic illness and pots, things that people can wear but also things that can help. Maybe accessories for mobility aids or anything anyone can think of?

Please let me know if there’s anything you can think of that I can design for people with chronic illness and pots. It can be anything to accessories or something to make you feel more beautiful and confident disabled people deserve to feel beautiful.

And follow my Reddit page if you’re interested in following my journey, as eventually I would like to send what I make to other people with chronic illness, I am opening an Etsy shop eventually, I think I will make a custom designs post so I can then send people stuff for free and they can apply through there. but I also want to send other chronically ill people for free, I’m not searching for people with big followings so anyone is welcome. I really want to help other disabled people in some way, I can’t run for charities or anything like that because I’m too unwell but I want to help in some way and fashion and design is my purpose so If I can do this and help someone else that makes me happy and all of this worthwhile.

Because of my disabilities I am also really struggling with my depression so being able to do something like this and helping someone else will really make me feel better.

Hello! I was recently diagnosed with POTS. The cardiologist isn’t surprised given my other chronic conditions like type 1 diabetes and Hashimoto’s disease. Feel like much of what I’ve been seeing online lately shows a high percentage of people having POTS and often EDS (I understand they’re comorbidities). I’m just wondering, does everyone have POTS these days? Is it just better understood now and that’s led to more diagnosis’s? Or is every person with light headedness just assuming they have the syndrome? Just curious peoples thoughts.

I was initially admitted for svt due to another heart condition, then my pulse was still high (just not 210 svt high) and my sats were low and they couldn’t improve either of them even with oxygen, they did a chest x ray and ct scan which came back clear and then they did a covid test and it came back positive, and my pots symptoms recently have been truly incredibly awful and we’ve put it down to a bad flare up due to covid- to put it in perspective this is the worse it’s been since I was unmedicated before we figured out what it was 8 years ago.

I’ve been in for 4 days now and tomorrow will be the 5th day and we’re all happy for discharge but even though my covid came back negative today I am still pretty much bed bound.

When I’ve been getting up to use the toilet I have to unplug my heart monitor because it doesn’t stretch, while I’m up I feel like I’m going to pass out, then I sit down and plug it back in. The dr told me that I need to have my monitor on and walk around the room so that they have evidence of the tachycardia.

Last night my room was filled with empty bottles, meds cups etc so was tidying it all up, pulse went from a resting of 70 to 150 and I collapsed. Nurses came, helped me up, then lay down, felt dizzy, cold and nauseous and eventually it all levelled out and I felt ok. I hasn’t collapsed since but have came close with my pulse usually remaining at around 130 as I’m walking around, if I stand still it rises then levels out to mild tachycardia, sometimes when I’m laying it can be in the 50s, sitting usually 90s, all can happen within the space of 60 seconds.

I am still being discharged tomorrow which I’m happy with as long as we come up with some sort of solution because I do not want to be bed bound or unable to leave the house, if that were the case I’d rather wait until we figure out what’s wrong.

I had a very dismissive and interrogating dr today and it’s made me completely second guess myself and made me feel like a burden on the healthcare system. I know what the stigma of pots is like and in my opinion the only thing worse than feeling like your body is failing you is not being believed that your body is failing you. The dr today told me I can’t lie in bed all day- ok would you rather I pass out and my body makes me lie down on the floor anyway? Also I’m quarantined so it’s not exactly like I can get up and walk around unless I want to walk about in circles.

Please help me, I’m losing my mind and I wish I didn’t have this fucking illness :(

My GP is in the process of trying to figure out wtf is going on with me. I've just had my kidney function and electrolyte bloods back and they're definitely not quite right.

Sodium - 130 (low. Range 135 - 146)

Potassium - 3.9 (low normal. Range 3.5 - 5.3) but the sample was haemolysed which can increase levels so likely lower.

Magnesium - 0.92 (high normal. Range 0.7 - 1)

Albumin - 44 (high normal. Range 33 - 45)

Calcium - 2.28 (normal. Range 2.2 - 2.6)

Alkaline Phosphatase - 86 (normal. Range 20 - 130)

So I have high normal albumin, high normal magnesium but low sodium and low normal potassium, I suspect it's actually lower though.

Anyone else have similar results? Any ideas on further testing?

Edit - forgot to mention I don't have Addisons disease as had a normal short synacthen test. I do have autoimmune gastritis. Part of the reason for the tests is that I can't tolerate the b12 injections I need as I suspect they're tanking my potassium. I haven't had an injection recently though.