I had pregnant onset POTS with my first live birth pregnancy. I was extremely dizzy, short of breath and fatigued all the time, couldn’t walk for more than 10 minutes without needing to lie down. Had a few episodes of pre syncope that took hours of bed rest to resolve. Couldn’t even be a car passenger for more than 10 minutes. Pretty much didn’t do anything for 9 months except lie on the sofa. I didn’t realize it was POTS until after giving birth and listening to someone tell me about their diagnosis. When I asked my doctor, she said there’s not much to do if it’s pregnancy onset. I don’t have it when I’m not pregnant

What are some things I should be doing in my subsequent pregnancy to manage the symptoms? I don’t want to be a complete invalid with a toddler running around. So far I only know about hydration and compression stockings.

I was diagnosed with POTS in 2023 after my symptoms really kicked up in 2022, but I now know that my symptoms that stretched back about ten years ago were related to POTS.

By far my worst symptoms is PVCs/PACs. I wore a heart monitor for two weeks in 2022 which showed I think 14% of my heartbeats are irregular, which they weren’t concerned about, but I had a few runs of “couplets” that they said they didn’t like but were probably fine. I got put on metoprolol and that’s helped, though certainly not eliminated, the irregularity.

For the last few weeks almost every night I’ve been waking up to an extremely irregular rhythm that’s enough to make me wake up from a dead sleep. The only way I can describe it is it feels like my heart skips a few beats, beats very hardly and irregularly for a few seconds, and then that kicks up a bout of tachycardia and irregular heartbeats for 10-20 minutes.

I have an appointment with a cardiologist that I’ve been waiting for almost two months for in late November. I’m just so, so fucking sick of this feeling and I quite literally feel like I’m going to die when it happens. A lot of anxiety that had abated after being diagnosed is resurfacing. I’m calm when it’s happening because I’m so used to it, but the last few nights I get SO anxious going to bed because I’m just convinced I’m going to drop dead.

I just need to vent as I’m getting ready to go to bed and started getting weepy thinking about it happening again tonight 😂 thanks for listening

One thing i havent seen here is the inability to read a book or tablet/phone for long without getting dizzy and nauseated. I start to feel I am going to pass out and my ears ring louder than ever. Anyone else have this? I wont be able to return to work like this.

hey gang. so as we know hot days are the worst enemy of the POTS sufferer. however now it’s starting to cool down (FINALLY) and i find myself a bit chilly. this will be my first winter with full-fledged POTS and i’m wondering if heat pads/hot water bottles/electric blankets will have the same detrimental effect on my symptoms as a hot sweaty day? obviously it’s a little different as i’ll only be using these at rest, but i don’t want to risk making myself feel worse in an attempt to not freeze.

sorry if this is a dumb question lol

I was prescribed vaginal progesterone for a pre caution for my 12.40 progesterone level being 7 weeks pregnant. And I’m curious if anyone had side effects with their pots? I’m nervous about making my symptoms worse cause I’m already struggling with the pregnancy but I obviously want to do what’s best for my body and my baby.

Do any of you guys get this tight feeling in your stomach but it’s actually towards your urinary area and it bloats? I have this every day but sometimes it’s worse than others. I don’t know if this is a POTS thing or something else. I have had it since I got POTS 7 years ago. I don’t have any constipation, urinary issues, or food issues so I’m lost.

I swear I’m doing everything right, tons of salt + electrolytes and tons of fluids, but I feel so so thirsty still and keep peeing clear like literally water. I don’t think my body is actually holding onto the fluids bc I still feel dehydrated. I don’t know what to doooo

I got diagnosed with pots this year but have been trying to get tested since 14.

This year has been a mess. I have grown so much weaker. My body hates me. Im always in pain. It feels like my nerves are on fire.

I have always fainted. Since I can remember. But this year I have started to have seizure like symptoms when I faint.

My body is so weak. Im so tired all the time. I can’t get out of bed to work. It’s been weeks. Months. I don’t know what to do. This has thrown me into the worst depression of my life.

The meds feel like they do nothing but I am hoping they are doing something. I don’t know What to do. Im just ranting bc I am so tired of living like this.

A few things I want to add.

Every morning i wake up with incredible join and body pain. It feels like everything is on fire. My body feels weak. I stand up very slowly. And move very sluggish for the first 30 minutes. My vision goes all blurry and wonky.

I also have HEDS. Which revolves around hyper mobility. IVE been told it’s possible for this to come hand in hand with pots. So this is another reason my joints suffer so much.

I feel sick 24/7. Cold and flu like symptoms. Belly aches. Headaches.

I feel weak every day. Like my legs could buckle beneath me at any second.

My motor functions DONT work as well. I find myself with Insane brain fog. Like I can’t remember anything. My heart is always racing. It never stops.

I just want to feel normal. As normal as I can. If anyone has any suggestions or advice please let me know. Im 20 years old and bed rotting 24/7 because I feel like my illness is taking over my life. So any advice would be appreciated.

I guess this is a combo of vent and question.

I finally got my tilt table test after years of multiple doctors suspecting POTS but doing nothing about it. I got a call today and they told me it's mild vasodepressor presyncope, I'm not entirely sure what that means. She told me i have to wait until Oct 30 for a phone appointment with the cardiologist to have any questions answered. My HR had increased by 36bpm by the end of the first 10 minutes upright, then continued to increase and mostly stayed around 50-60bpm above my resting HR for the last 20 minutes of the test. The advice I was given when I got the phone call was to increase salt and fluid intake, which I've already been doing for years as I was advised to do so by a GP when I told them my symptoms. I was distraught after getting that call because I wanted more actions I could take to feel better, I'm tired of feeling sick and exhausted. I'm wondering what more info or help I should ask for from this cardiologist. What were other people's next steps after a similar diagnosis?

So, I have POTS, I was diagnosed with it in my senior year of high school after the accident, with the tester claiming it was a “severe case” and I’m on medicine now, which I constantly forget to take. Anyway, I’ve been dealing with this incredibly frustrating problem, which everyone I’ve talked to seems to agree that it’s likely a symptom of POTS. Well, I get double vision a lot, so much so sometimes that it will give me a headache just because of how hard I have to focus to see basically anything. I can feel the strain in my eyes and it only goes away if I close one eye or both eyes completely. I constantly miss things, like I’ll reach for a door handle and literally miss the door handle because my brain made me reach for the after-image type thing. I’ve tried an eyepatch, it doesn’t really help because i basically see THROUGH it, and it’s just really hard to live with when it crops up

A stressful event, that began last night, has left my nervous system fried.

I can’t talk about it without crying.

I can’t sleep right.

My hands are shaking constantly and extremely sweaty.

I feel like I’m constantly having adrenaline dumps over and over and over again.

No amount of hydration, salt, distraction is helping.

I have no appetite (literally just ordered smoothies for tonight and tomorrow cause I’m too exhausted to chew).

In the last 6 years of dealing with POTS, this has been the worst flare or event or whatever you want to call it.

I’m doing my best to keep it together and trying to care for myself but my god is it difficult when the simplest thing sets me off.

Hey all! Had my TTT today and I just wanted to share a fairly positive experience to reassure anyone feeling anxious!

Obviously every place will do it slightly differently, and everyone will experience different symptoms but wanted to share a positive experience from someone who was pretty terrified before my TTT! The nurses were lovely and calm and for me honestly the anticipation was the worst bit. For me it was really not too bad, I didn’t have nitro or any other meds, I initially felt lightheaded as I went up (it’s a strange sensation!) and then within 10 minutes I began to feel on the verge of passing out, racing heart (the usual!) and that’s when they lowered me back down and gave the blood a chance to come back up! Recovery was super quick and other than feeling a little wobbly for an hour or so after I was fine! Obviously it’s not pleasant by any means but 100% worth it if it gives you the diagnosis you need, and you can also stop the test at any time if it’s too much.

I’m not saying this will be textbook for everyone but I know I was struggling to find anyone that didn’t say it was the worst experience ever before mine and obviously you will hear far more horror stories than positives, so I thought I would share a fairly positive one.

I would recommend being ready with electrolytes and water afterwards though to help you feel more human quicker afterwards!

Good luck and don’t stress too much :)

Im fifteen years old with POTs and it’s not even like I go dizzy that often.

Does anyone play sports with POTs and is still fine? All my symptoms are right now is just passing out and a high heart rate. But my passing out is usually just when my blood sugar is low on top of the POTs. So I’m cool with that. I’m not medicated or anything though, I think I’m just expected to grow out of it ngl.

I don’t drink a lot of water, and sodium makes me throw up as it is, so if I increase my intake of that I should theoretically be alright to play.

Until about a month ago, I never used to have such a low heart rate. Recently, I have started noticing a lower heart rate at rest. It is usually around 63–65 bpm, but when I lie down in bed for a long time, it drops to around 53–55 bpm.

I haven’t made any significant lifestyle changes. I still occasionally work as a waitress at events, where I am constantly moving for around 12 hours. However, I only do this two or three times a month, and not necessarily every month. I don’t do any regular exercise.

My heart rate does increase when I move around, cough, stand up, or walk. However, the low heart rate genuinely worries me because I can feel it dropping, almost as if my heart is applying the brakes.

While I’m asleep, my heart rate is usually between 45 and 55 bpm.

My main concern is that this is a new change for me, as I never used to have such a low resting heart rate before.

it was like 53 sleeping and 68-73 resting not mid 50’😵‍💫

For whatever reason I get suplex during the winter and fall months. It is awful today, everything is so blurry and double. It feels like every couple of minutes a trap door is under me where it just releases. it doesn't exactly help my IBS keep acting up as well. It really fucking annoys me to be complained at about things that I did not know about. Considering I'm always farting around anyway finding any speck to clean or adjust.

I hate complaining but wow do I feel like shit today.

does anyone have advice for dealing with bad white coat syndrome?

i genuinely don’t know what my true blood pressure is. whether I am at the doctor or at home, as soon as the blood pressure cuff inflates I get a huge surge of anxiety and adrenaline. my heartrate jumps up to 140-160, my blood pressure jumps to 160/110. the lowest I’ve gotten it down to is about 135/85, but that’s with my heartrate still extremely elevated. i feel like im gonna have a panic attack every time. I know that testing blood pressure is crucial for a pots diagnosis but I don’t know how to deal with this 😣 any help is welcome

Hey yall, I just got back from a trip, and I am less than hanging in there. I’m extremely foggy, my head feels unreasonably heavy, my neck feels like it’s being grabbed from the back, I’m dizzy, I cannot sleep enough, I can’t drink enough water, my nervous system is in overdrive, eating is causing crazy episodes. I don’t know what to do. I’m starting to panic and it’s making everything worse, if anyone has any tips please help me out.

So, it's established that POTS on its own messes with glucose metabolism.

Autonomic Regulation of Glucose in POTS - YouTube

I was personally finding my fasting glucose and HbA1C drifting upwards, as well as more instances of nighttime waking that I usually resolve through eating (typically I have a protein bar), implying this is somewhat of a blood glucose issue.

So I booked an appointment with a dietician, and also asked my GP to prescribe a CGM so I could start tracking my blood sugar. It's been enlightening so far in ways that I am not sure I am ready to articulate after only wearing it for 3 full days.

I'm wondering if anyone else has worn one for a while and what you gleaned from the experience?

(Please don't ask me how you can get this approved: I have no idea. I live in Canada and this is covered with a prescription under our extended health benefit plan.)

Idk what to do from here, I told him my symptoms and when I started. I also told him that my HR goes up to 130-150 just from brooming. When I told him I’ve seen many doctors and a cardiologist but they couldn’t find anything, he told me that I should just go back to my last cardiologist. I told him that my last cardiologist didnt wanna do more testing and he told me it was all due to stress and anxiety. He just told me that he couldn’t do anything because my other cardiologist already did all the testing that had to be done. I asked if he can do some other tests because my other cardiologist just did an echo, heart monitor and treadmill test but he told me he couldn’t do more testing either.

I’m so done with this, I don’t know what else to do, I can’t work and I’m gonna go broke soon, I just fear for my future.

I’ve had pots since I was 11, but in 2023 I had meningitis and it got so much worse. I currently pass out at least 8 times a day, I have a port and get daily infusions on 1L of normal saline. I currently see Dr. Armitano in Mountlake Terrace and I feel like he’s not listening to me, he only has me on ivabradine and fludricortisone and is not trying me on other drugs even though I keep telling him they aren’t doing anything. The only thing that has helped is infusions but they only help for a few hours and then I go right back. I’m so lost. I’m in the hospital all the time, but the hospital keeps telling me they can’t admit me because it’s not life threatening or that my case is too complex for them. When I ask to transfer to a hospital that is more equipped for my case they tell me no. Mayo Clinic has approved me for an appointment and so has UW but they both only do diagnostic testing and no long term care. I’ve already been diagnosed and need long term care. I’m so lost and so tired of this. I just started my teaching career and I feel like I’m failing because of my illness. How am I supposed to live like this.

Please any help is appreciated.

Been struggling more and more over the past few months and now if at some point in the day I walk 1 mile without breaks I am left in bed rest for that evening or the day after. I recently went away for a few days to Sweden and was able to borrow a self-propelled manual wheelchair for going around museums and I felt so much better than I did when doing museums previously without one.

If I stay home I’m completely fine but going out and walking places is becoming pretty hard, I just don’t want to make things worse if I “don’t need one”. Obviously I’d discuss the decision with my doctor first but I want to know if this is something worth pushing for.

Those of you who use or have used a wheelchair for helping with PoTS, when was the “yeah I definitely need this” moment?

I (F,23) have never been in a romantic relationship before. I was mostly busy with school, family issues and other things.

I wanted to try dating as soon as I finished college, but that was when I got sick and was diagnosed with POTS, and since then I have been busy with my health and haven’t met anyone.

I have been thinking about the situation, and I saw a few comments about how being sick can affect your relationship and sadly many people are getting divorced because of it or feel like a burden to their partners.

I personally don’t want to have kids as they are a huge responsibility and it’s hard for me physically to give birth or take care of one. I know this fact by itself limits my dating pool massively, add my chronic illness and now I feel like my chances of a relationship are even smaller.

I’m not saying people with disabilities or limitations are less worthy of love, in a perfect world they actually deserve more love and support.
But this is still Earth, and people will still judge you for physical limitations especially if you are living in closed-minded and regressive societies like mine.

I always knew finding a partner would be harder than if I were healthy and fine, but today someone also hinted at it to me and it just stings.

If you are single and have POTS, how is it going with you?
And if you are in a committed relationship, how did it affect you?

Anyone else having way more flare ups than normal these past couple weeks?

It’s something almost daily triggering them for me. I haven’t been able to pin point what’s causing them, but boy am I struggling right now. I’ve heard of the October slide, maybe this has something to do with it?

What are you guys doing to be comfortable and functioning right now?

I have very low bp often as well as bradycardia when sleeping. I'm in flare and I'm thinking about trying meds. Propranolol is no due my ocular migraines iih and low bp, ivabradinre mess with my eyesight and I already have damage to my optic nerves due iih. What else left?

I know everyone is different but is anyone on anxiety meds and have success?

Pots has given me the worst healthy anxiety and I really believe I need a low dose medication to get my life back.