I always think I know how to manage my POTS until a 30 C spring day comes along and suddenly I'm filled with dread for summer (used to be my favourite season, mind you).

Other than planning on staying inside as much as possible, I'm drinking loads of water with electrolytes, though I need to check the brand (I think it's just the Coles brand) for exactly what's in it (any recs would be good!). I've tried compression socks but the autism is too fussy with exactly how tight they are.

But that's pretty much all I have going on. My long term goal has always been to get more active to combat deconditioning, but I'm waiting for my health cover next year so I can see an exercise physiologist so that's kinda paused for now.

Surely there's more I can do than this though?! Am I missing anything really obvious. Let me know :)

thoughts and feelings after trying to vacuum my room:

my body works against me every single day, and despite my immense feelings of grief, shame, depression and rage, i can’t even get myself to exercise (which is what i’ve been prescribed to do by countless doctors). i feel like it’s my fault i’ve gotten worse over the last year, and i’m permanently a fuck up. this cycle of self blaming isn’t beneficial, but i don’t know what else to do. my mind just brings me here and i can’t not spiral. i’m tired beyond words.

A few things for context - I found out recently that I have POTS, I had covid 4 weeks ago (negative now for awhile), and I also have anxiety that is managed.

Last Saturday my husband and I went for date night. I was feeling very tired and having stomach issues before we left so I took my Zofran and Imodium. In the car I just felt very tired and out of it but had no anxiety at all. Throughout the drive I noticed that my hands and feel started to get numb and tingly. I wasn’t sitting any differently than I have before. As the drive progressed my face and chin got the same feeling and the feeling was throughout my entire arms and legs. My entire body at that point was completely numb and felt like pins and needles. I was also feeling like I was going to lose consciousness.

I told my husband something felt really wrong because I’ve never had this feeling before in my life. We started driving to the emergency room and as the minutes progressed I was having a hard time lifting my hands or moving. I figured I would try to call 911 so someone could be ready at the hospital when we got there and my hands struggled so badly to type out 911.

We got to the hospital and since I couldn’t move or do anything I yelled to see if someone could bring a wheel chair to the car and then I had an extremely difficult time moving or talking to the nurses so my husband did most of the talking. We waited for 4 hours and the symptoms started to ease slightly and were replaced by extreme tiredness, being out of it, and having a hard time walking (I could walk just extremely slow). It was going to be atleast 4 more hours until they could bring us back so we decided to wait it out at home.

Since then, I still feel out of it and very very tired and my body aches, but I am so so confused at what happened. I have never experienced something like this and I know when I have anxiety or panic attacks and this was not one of those moments (my anxiety definitely kicked in a bit though when I couldn’t move my limbs and I felt like I was out of consciousness).

Has anyone ever experienced this before? I did go back to the ER today as my primary care doctor mentioned about possible mini stroke / TIA or seizure. They did a very short MRI to confirm there were no life threatening issues so through this they confirmed there was no evidence of a stroke and no signs of MS. He mentioned that I would need to see a neurologist and he is thinking this seems very likely to be an autoimmune disorder or a neurological disorder / possible seizure. My B12 levels are good and my electrolyte levels looked good as well.

My husband and I just moved houses today, we had a moving company come and take all the big stuff and furniture which was great, but of course Murphy’s law hit and my husband has worked between 45-60 hours a week the last 3 weeks which left him pretty much only 1 full day and an hour or two here and there every week to help me pack stuff up. Also having an 8 year old son who is on the spectrum to take care of, cause you know, mommy duties. But let me just tell you, I have pushed and pushed and pushed myself this month, my visible pace point is set at 20 per day, 5 out of 7 days for the past three weeks I have used between 40-79 pace points each day. I finally told my hubby around 4pm that i can’t go anymore, I can already feel the flare up/crash hitting, palpitations, tremors, headache, chest pain and joint pain, high heart rate even when I lay down. I have a feeling I’m going to wake up tomorrow and be in bed for the rest of the week.

I feel like every electrolyte drink has a completely different formula. Some are packed with sodium while others focus more on magnesium and potassium. I know sodium is a big deal for a lot of people like us since it can help with blood volume. But I'm curious how much attention people pay to the other electrolytes like magnesium. It also seems like a lot of drinks marketed for hydration barely explain what each mineral does.

Do you guys focus mainly on sodium or do you look for a balance of electrolytes? And have you noticed any difference between the mixes you've tried?

Has anyone had any recent flare ups while getting the flu shot or any vaccines? In no way am I encouraging anti-vaxxing but just wanted to see if anyone had any bad pots related reactions

Hi Everyone! I recently started a petition with the hopes of making some change in the way ME and POTS are treated in the hospital setting. It would mean the world to me if you signed. I plan to take this to New York's Governor, Kathy Hochul, and have a great endorsement in the works :)Petition

I had to stay in the hospital for a night post surgery due to POTS. Insurance didn’t pay my bill so I called billing and they said it was due to having a different primary insurance (which I don’t). I called insurance and they told me it’s because it was not submitted to the behavioral/mental health department. I said “why because this was a post-surgery stay?” He then told me because “POTS is an anxiety disorder with migraines” according to the notes/submission. Anyone else run into this explanation? Now I get to call billing again to figure this out. I don’t even know the correct questions to ask. Ready to scream into the void. (Each of the people on the phone have been wonderful and they are only the messengers.)

I recently got fired from my HVAC job because I couldn’t keep up with the physical demands of installation due to my POTS. I’m starting to realize that physical jobs might not be realistic for me, and I’m not sure what career path to take now.
I enjoy hands-on work and troubleshooting, but I need something less physically demanding that pays good Has anyone with POTS been in a similar situation? What jobs have worked for you?

My cardiologist prescribed me propranolol 10 mg as needed for my POTS symptoms. He’s starting with a minimal approach to see how much I feel I need the medication or not. After taking it a few times, I’m realizing how jacked up I actually am naturally bc POTS.

Didn’t realize this because my normal isn’t normal..
I have always lived with my heart jumping out my chest and doing random big fluttery things, weird sweating problems since forever with temperature regulation struggles, exercise intolerance, lightheaded/ blacking out when reaching upwards or standing up fast, racing heart rate, etc etc..

Propanolol makes it all go away by like 80%.. it’s insane and I’ve never experienced being “normal” like this before.

I am sensitive to medication side effects more often than not, and I’m really just trying to gauge if it’s okay to take this medication daily. Also if I should worry about any potential issues from taking it regularly? I have seen some things about weight gain and hair loss and I don’t love that but also not sure how common these are..

am I going to be living in misery forever. i don't want to be disabled i want to be normal. how do i make it better? don't tell me to excersise because I'm too weak to go up stairs these days.

i was on a medication for a few weeks that ending up causing sudden high blood pressure. i had gone to the cardiologist to actually get a diagnosis for POTS when it was discovered that my blood pressure was extremely high and i was thrown onto 80mg ER propranolol before i could get an official diagnosis. at the time, my heart rate was 8bpm off from meeting the criteria during my “test” which i’m pretty sure they didn’t do accurately either. i laid down for only 30 seconds before they took my laying down reading AND i was talking because i didn’t realize he was doing the test right then. so it wouldn’t have accurately shown my bp and heart rate at rest.

the dr said yeah you probably have POTS and to do this and that to help but it doesn’t make me happy that i didn’t get an official, on your chart, diagnosis.

anyway, now i’m off the medication that caused high bp but i’m stuck on this propranolol dose that is too high for me (lightheaded, exhausted, more dizzy spells) and they believe since my bp numbers are fine and my heart rate is 40bpm lower than it used to be that it’s working JUST FINE.

i said ma’am i don’t feel fine i feel like i’m going to pass out every time i get up (more so than usual!)

i’m getting more random flashes of light/stars in my vision than i normally would and have been falling asleep during floor workouts between reps.

they aren’t taking me seriously or maybe they are completely unaware how to treat POTS. not sure, but i was gaslit by the nurse saying my lightheadedness and exhaustion needed to be brought up with my pcp instead of cardiologist (who prescribed the bp meds) since it’s probably caused by something else (not my propranolol). like no way.

i’m not sure i’ll ever be able to meet any criteria if i’m stuck on this bp medication (i am glad it has lowered my heart rate tho that’s one thing i’m happy about). i took 10mg immediate release propranolol for like 2 years before now and trying to get off of THAT dose made me sick. i can only imagine what getting off 80mg would do.

Met with new electrophysiologist and he says I don’t have pots he says I have IST. And usually you grow out of IST in 3-4yrs. Anyone else heard of this ?

Hi y’all! I was recently diagnosed last month and was wondering, what signs and symptoms y’all have learned to look out for to prevent you from overdoing it?

Oddly enough, I have no idea what my early signs are despite having this condition since I was 10 (25 now). I always felt the need to mask my condition in order to keep other people comfortable and kind of as a protective coping mechanism. I’ve got so much practice ignoring my symptoms, I don’t even know what they are until I feel like I’m about to fall over lol.

I also have ADHD and I suspect that may have something to do with it as well.

In light of trying to advocate for myself more (and knowing when my body is telling me I need to), I would love to know what y’alls first signs are or any strategies y’all used to figure out what your individual signs are.

I'm curious how y'all got diagnosed with that specifically, and can you have it if you have orthostatic hypotension? When I got diagnosed with POTS a few years ago, I was told that the blood pressure drops were more significant than the changes in heart rate, and taking sodium tablets does help me quite a lot with lightheadedness, dizziness and heat intolerance. Overall, I feel better since getting diagnosed in terms of things like exercise intolerance and general malaise/flu like symptoms. Brain fog endures though.

Here's what makes me curious about hyperPOTS- I've always had anxiety, but it wasn't really that physical. But for the last few years, I've had an overwhelming sense of dread with no thoughts attached and crazy chest pain that makes me feel like I'm going to die of a heart attack out of nowhere, lasting for hours on end, sometimes all day. It feels physically induced and not mentally induced. None of my normal coping skills for anxiety touch this level of extreme physical symptoms. I also developed essential tremor during that time. Whenever I get blood tests for cortisol, it's always high.

Also, if you do have hyperPOTS and ADHD, I'm curious what people's experiences have been with stimulants and Wellbutrin? I've been on Wellbutrin for a few years and am starting to think it might be worsening these symptoms (especially the tremor, which I didn't have before), but when I added Adderall, I think it actually made me less anxious (no difference in physical symptoms). I do have a psych prescriber, but she's not knowledgeable about POTS, so I figured I'd ask to see what others' experiences are.

*edited to add* my blood pressure runs low, so I can't take meds like beta blockers, clonidine, etc

Hi!! I thought I’d post the process of my diagnosis of dysautonomia, incase anyone is going through it, this is a realistic timeline of events that led up to my diagnosis.

April 2020, I passed out for the first time and went to the doctors. Got told my bp was fine, bloods were normal, it was a fluke. Got turned away.

September 2020, I passed out multiple more times so went back to the doctors, got tested with bloods and bp again, told it all came back normal. Doctor told me it was probably due to periods / anxiety. His treatment suggestion was “an online app for anxiety”

I was literally diagnosed with Orthostatic Hypotension on this visit, but was never told untill 6 years later.

2021-2024
Between this time I went a couple more times just to get turned away again and again because the doctors claimed it was due to periods and puberty. Fainting at this time was occasional (once or twice a month)
(Nobody was aware that I was allready diagnosed with Orthostatic hypotension)

2025 November
I flared, and I flared bad. I have not had a good day since November 2025, that’s when I got really sick. I don’t know what set it off. I have been fainting 10+ times a day since.
I went to the doctors and again was turned away. The doctor said I would grow out of it

December 2025.
I insisted for answers. I insisted I needed help after suffering for 6 years. By this point I couldn’t work at all, I had to quit my job, I had to quit my volunteer work.
A good doctor did all the necessary prerequisite tests and reffered me to the POTS unit.

May 2026,
Through an expedite letter, I got an early appointment with the pots doctor. I saw her and then she informed me of my Orthostatic Hypotension diagnosis. (I had no idea this whole time, none of the 6+ doctors I saw about my fainting ever knew about or mentioned it)

My doctor still wanted to give me all the testing for pots to ensure I had OH and not POTS

October 2026.
Finally had my follow up. I definitely have OH and not POTS. I’ll be doing one more test before I start on flurdrocortisone. My pots specialists through the NHS are very slow to see, but they are knowledgeable and kind.

So all in all, it’s taken over 6 years to be given treatment options, 30+ doctors appointments, bouts of depression, lots of crying, lots of suffering.

My best advice is so NAG. NAG your doctors. Stand up for yourself. Call them, see them, tell them. If they turn you away, don’t agree to it. Tell them you need more. Get everything written on your NHS app ( if you’re in the uk)
Have everything documented, get expedite letters, tell them how much you’re suffering, and don’t give up

23 F, symptoms ongoing since possibly January. Basically January I started having more nausea, palpitations, SOB, dizzy spells, extremeeee fatigue, tachycardia, etc. Thought it was mostly anxiety, saw my psych and my HR was 130’s. He gave me anxiety meds and put in some labs to get drawn asap at my PCP.

Saw pcp next day, labs showed super bad vitamin d and iron deficiency. Replenished the vitamin d through pills and iron through infusions. Labs normal as of 2 months ago, next serial draw is this week to monitor them. Most of the symptoms went away except the extreme fatigue and dizzy spells, which even after the supplements caused 2 falls. Told my hematologist, she was like “well, it’s tiring to be a woman in today’s society” so I went to my psych and he adjusted my meds, which helped some with energy but not totally.

Palpitations are getting worse this past week I’ve noticed, my intermittent chest pain (have had it since childhood, was 20 times worse as a kid no matter what) is getting slightly worse, and my hr was 137 whenever I randomly checked it (was asymptomatic when I checked it though, it’s been 120-130’s whenever I check it standing. It’s normal in the 70’s-80’s when flat). Never sure if the HR improved with the iron, I never kept up with checking it over the months. But last time I was at the doctor’s in August it was 120.

Anyways, gonna schedule another appointment with my PCP. She mentioned before possibly starting beta blockers but because my holter showed an average hr of 85 even with the max hr of 165, we just didn’t. And now I’m thinking pots since the average was so normal and ofc I was sleeping most of that time so I’d be flat. Only other cause I can think of is my Pectus Arcuatum, I’m gonna ask for a chest CT to see if it’s causing heart compression leading to POTS like symptoms.

Did you have to have a ton of things done before they went down the route for POTS to cross things off the chest list? Just wondering what it’s all going to be like, because for iron deficiency I had like 15dr appointments within a single month to rule out a million things.

Hi, long story short I've had immune and fatigue issues for years and numerous immunologists couldn't help me despite months of appointments. Same with a cardiologist. I'm seeing a rheumatologist for the first time next week.

I always thought POTS was about dizziness and vertigo/balance. I never looked into it. I finally did recently and it was everything I have ever experienced written out. It almost felt comical with how much lined up. There is not a shred of doubt in my mind I have POTS and I'm going to push for testing and diagnosis at my upcoming appointment.

However, now I'm having a ton of anxiety. There was so much relief in realizing a syndrome matching so much of my experience existed. But I know POTS is frequently comorbid. I recognize my symptoms of POTS go back to when I was 12 years old, maybe earlier (I'm about 30 now). I'm nervous that I have lupus or EDS due to other disabilities of mine. The dread of having to go through all of these years of pursuing help again for a second condition stresses me so much. Especially when I still don't even have a POTS diagnosis, I'm just hoping and praying the rheumatologist this week will listen to me.

To be honest, I'm mostly looking to hear experiences from others who experience POTS, especially if it's been present since a young age. I'd love to hear more about really any positive stories of diagnosis, treatment, etc. Thank you so much.

Hey.

I don't really know what I'm looking for by posting. I just had a hard appointment with my cardiologist and I'm just feeling... defeated. He told me because I'm upright and not fainting, then I'm being treated and there was nothing else I can do. He acknowledged that I feel awful, that I can't walk around the block without being insanely dizzy, that things are worse than they were before, but since the cardiac test results were unremarkable, he said 'keep drinking Gatorade and eating chips. There's nothing else you can do.'

I feel hopeless. I can't take the medications, I've tried midodrine and fludrocortisone and both gave me severe migraines to the point that I couldn't function. The rest of the medication he won't even try because he said they won't help. I can't take salt tablets because they make me vomit within minutes of taking them. He said physical therapy won't help and is a waste of time. When I asked how to exercise, he said 'well you can try yoga, but I don't think it'll help'.

I didn't go into the appointment hoping for a cure. I wanted a plan. Something to help with the worsening symptoms and my inability to even do household chores. I got told this is POTS, it is what it is.

So... I guess that's it? I don't know where to go from here. If someone could tell me there's a light at the end of the tunnel, I'd appreciate it.

I have my tilt table test in the morning . My poor man’s tilt table test was positive but my cardiologist said that does not matter and only way to diagnose is the procedure . My heart rate goes anywhere from 48-199 currently.. I’m nervous I have syncope & struggle after I pass out for days or weeks at a time . Ive been in & out of hospital so much last few weeks and just ready for some answers . I use to work out 5 days a week , walk my dog & run . I haven’t been to gym in two months have been doing better at walking dog but I feel like I haven’t gotten better physically or mentally . Had a bad flare up after a colonoscopy & endoscopy that left me in bed for weeks and I’m just really scared that this will set me back even more . Have been waiting months for this test but now it’s here and I am terrified . Any advice or things I can do to prepare for after the test ?

So this has happened to me over the years (I’m late 30s now), maybe only once or twice a year. I’ll pick something up or do something very minor and suddenly the affected finger will swell ans be uncomfortable and get this bruise/haematoma?

This is the worst one I’ve ever had that happened today - just from picking up a heavy washing basket (I’d post a photo if I could but not sure how to add one).

Anyone else get this and also have POTS/dysautonomia? I don’t know if I have any connective tissue disorders etc, haven’t been diagnosed with any co morbidities as of yet.

Thank you

Hi everyone! I’m curious about others’ experiences with POTS and pregnancy. Just to clarify, I’m not looking for medical advice, and I want to make sure my post follows the rules of this forum.

My husband and I have been wanting to start trying for a baby, but I’ve been concerned about whether my POTS or the medications I take to manage it could be affecting my ability to conceive.

I was diagnosed with POTS in early 2022 and have definitely experienced my fair share of ups and downs with flare-ups. Thankfully, I finally feel like I’ve found a medication regimen that works well for me. I also recently switched to a new health insurance plan that will allow me to afford a good OB-GYN, which is a huge relief!

I stopped taking the birth control pill in May, and we’ve been actively trying to conceive since early summer. I’ve also been using ovulation tests to help track my cycle, but so far, we haven’t had any luck. I know it may simply take more time, but I can’t help wondering whether my POTS or the medications I’m taking could be playing a role.

I just turned 35, and my husband is 33. Aside from my POTS, we’re both healthy, active, and aren’t aware of any underlying health issues. I also know that, because of our blood types, I’ll need a RhoGAM shot during pregnancy, which is another thing for us to keep in mind.

I realize my next steps should be to talk with my cardiologist and schedule an appointment with an OB-GYN to discuss everything, especially my medications and any potential concerns before pregnancy. In the meantime, though, I was hoping to hear from others who have been in a similar situation.

Has anyone with POTS experienced difficulty conceiving? If you’ve been pregnant while managing POTS, how did your symptoms change throughout pregnancy? I’d also love to hear about your experiences with managing medications before and during pregnancy, if you’re comfortable sharing.

I’ll admit that the process is starting to feel a little disheartening, and I would really appreciate hearing some personal experiences, reassurance, or words of encouragement from people who understand what this can be like.

Thank you so much for taking the time to read my post! I’m hoping to connect with others who can relate and share their experiences. ❤️

I’m sick of being hot all of the time. I never get to be cold anymore and that was one of my favorite things before getting sick. Now being sick all the time I feel hot pretty much all day. It also makes my blood pool all of the time. I can no longer wear long sleeves anymore because I will just overheat. It’s been 7 years and this is just getting old.

I have fans and ice packs. Nothing works and I‘m just sick of needing them when no one else does.

Does you guys get this?

Edit: Thank you for all the comments! I will try to get to as many of you as I can.