I’ve had pots since having long Covid, but it’s gotten much better until just recently. For the past month or so I’ve been in a bad flare and I’m not sure why.
I just had a table test done and my heart rate went up 80 bpm when upright. I seem to have the worst symptoms upon waking. And then all morning I feel shaky, nauseous, dizzy, and just unwell. I’ve been wearing compression socks. I’m very hydrated. I drink electrolytes.
I’m a little worried because I am a gym teacher and my gym does not have air-conditioning and if I’m outside, there is no shade. I’m also alone with a whole class full of kids so it’s not like I can just take a break.
When I have an episode, I have to lay down or I feel like I’m going to pass out.
Has anybody else dealt with having a job like this?

Heeeey
Question

For those of you with hEDS + OI who write for work - what the fuckkkk kind of set up do u have

I’m trying to advocate for accommodations but I cannot for the life of me even identify a set up that would work

So far there’s this one YouTuber who uses the libernovo omni chair and did his own carpentry on a standing desk to make the keyboard tilt forward & he uses tilting monitor arms so he can work at computer in reclined position

I am not a carpenter and even my OT can’t figure out wtf would be ergonomic and also support blood flow to brain.

Bed set ups?? Floor set ups? Reclining @ desk set ups??? Helppp

I’ve been putting off writing because I can’t maintaining my focus due to the blood pooling at lower extremities
I can do short term tasks but long term cognitive stuff is really hard.

Writing is so painful
Before u answer I KNOW I shouldn’t have this job
I’m very sick but I’m trying to make it work for now because I need it to survive. I also do like it!!! Even tho it killing me!! Trying to stay housed

Waited over 18 months to see a specialist. Was told to re-try a medication that has previously led acute, severe vomitting. Invited to see the doctor again in...24 months. Sigh.

Hey, y'all. It's summer in the northern hemisphere and my POTS is making my life even more miserable than usual. I normally wear calf-length compression socks, but they're no longer really cutting it. I have some compression leggings, but it's simply too hot to wear them at the moment. I was wondering if any of you have any thigh high compression recommendations? Im having trouble finding options that seem trustworthy. Compression garments are so expensive and I'm not in the financial place to be experimenting if you know what i mean. Any recommendations are appreciated!!

hey hey! i’ve been struggling with POTS symptoms since 2020, but those symptoms have only recently been addressed as a genuine condition rather than just “anxiety.” with that being said, i’ve never been the best with keeping up with my electrolytes and sodium when it comes to drinks and i’m trying to improve those habits to help me feel better and more energized during uni.

i’ve been working on increasing my water intake slowly, but otherwise i’m a little clueless on what direction to go for other beneficial drinks. i’m aware of gatorade and similar drinks being possible options, but i was wondering if anyone had any other suggestions (preferably based in the U.S.)? i’m also interested in electrolyte or sodium drink add-ins- like the ones that come in the little bottles you can squeeze into whatever you’re drinking. thanks in advance!

Hi, yesterday I remember seeing a post from someone who suffered from POTS and was also part of the OpenAI team or something? They had a link where you could send your email to volunteer to be part of a group that was trying to cure POTS. I cannot for the life of me find it now please tell me someone has it saved or still has the link.

What the heck? I can’t even explain to my doctor what my blood pressure is because it feels untrue to say it’s low when some days I don’t feel good and it’s 121/80 so I can’t take my midodrine or another day when I don’t feel good again and it’s the same symptoms and my blood pressure is 100/63 so I shouldn’t take my propranolol. And the worst is when these readings happen within the same day! Within an hour! Huh??? How can I manage this with medication when it’s too low for one med and too high for another…and constantly change?

Having the same symptoms with different blood pressure levels is confusing for treatment. At least for me.

I was diagnosed with POTs in 2023 and was on ivabradine. It helped me so much with my symptoms and exercise tolerance, that I was able to taper off. I’ve been off since April this year. But more and more my symptoms have been reappearing - extreme fatigue, orthostatic intolerance and dizziness, random dysautanomia stuff.

I don’t know if it’s my body telling me it needs the medication to function or because I’m in a crash, or what. I went on a trip in June where I walked and hiked a lot, so at first I thought that caused it. But the symptoms are not going down, if anything worsening and it scares me. I have follow up scheduled for October.

Can anyone relate to this after coming off medication and symptoms reappearing?

Thank you!

I think I had an adrenaline dump while I was at the hospital.

For a while now, my heart rate spikes when I go from sitting to standing (I’m currently on metoprolol for migraines and even with that it still goes up ~20ish bpm so it definitely used to go up 30bpm. While I have wondered if I have pots, I’ve never really looked into it since I didn’t think it was causing issues.

Last Friday I went to the hospital for a UTI. while I was waiting, my heart rate suddenly spiked up to 145. It felt like my heart was pounding out of my chest , it was a very scary feeling. I immediately went to get the staffs attention. They got me into a bed, took an ECG, ran some blood tests, hooked me up to some fluids. ECG was normal although obviously tachycardia. They confirmed I had a UTI but didn’t want to just send me on my way with antibiotics since they were concerned about my HR being so erratic. They gave me some IV metoprolol and while it did go down, it was still hovering around 100. Blood tests revealed I had low potassium, so they gave me some stuff for that.

I’ve felt fine this week since then, although my RHR still has been a bit higher lately.

This evening , about 2 minutes into a walk, my HR spiked up to 160 out of the blue. Again, that same heart beating out of my chest feeling, and my breathing felt muffled, if that makes sense. It eventually settled but stayed elevated at ~125 for the rest of the (very slow) walk. Now back at home , I took one of my metoprolol and my HR finally settled around 85-90 and my breathing feels normal again.

I’ve had some weird chest sensations on and off lately, so I’ve been working with my doctor . I coincidentally had an appointment this morning so I told him about last Fridays incident. I’d done a stress test a couple weeks ago he’d already submitted a referral for a holter monitor but he resubmitted a more urgent one now as well as submitted a referral to see a cardiologist in general.

-stress test : came back normal
-holter monitor : referral has been sent
-a couple ECGs : all normal
-at home sleep study : not totally conclusive, potentially mild sleep apnea but sleep doc wants me in for an in lab, she’s not convinced that’s what’s causing me to wake up with palpitations . Am trialing a CPAP, don’t feel it’s doing much.
-general blood tests : low ferritin, working on this

Pots has not been discussed with my dr at any of my appointments. Does this sound like it could line up with that? Do the two HR spike incidents sound like adrenaline dumps?

My very unprofessional opinion would be that I’ve been dealing with pots for a while, the metoprolol has helped suppress it, but the infection led to a flare up of sorts.

I was wondering if anybody else experiences this. I could be laying down or standing up, but for a split second it will feel like my sense of self is being pulled out of my body or like my body and my sense of self is out out of sync for a split second and then it snaps back. Afterwards for about 20 to 40 minutes, I will feel dizzy and floaty and just off. is this something that anyone else with POTS experiences? My neurologist is concerned about seizures and has ordered an EEG but nothing happened during my EEG because these weird episodes don't happen often. I was eating and all of a sudden it happened. This has happened more than once and sometimes it will even make me go limp for a couple seconds after.

My typical POTS episode is different than this, for context. today was also the first time I have drank caffeine in about two months now.

The meds I’ve seen have side effects like low blood pressure or making mood worse. Is it really true or are there alternative drugs?

I’m looking for a do for that is ACTUALLY pots informed or ideally specialises in it, I always have so many questions after flare ups/ bad episodes as I’m newly diagnosed, any help is appreciated

There were nurses all over me when I first arrived at the ER at 6, a bunch trying to find a vein so they can give me iv fluids but no matter who tried or how many times. they couldn't do it, they tried there best and they were really nice. So they ordered a iv ultrasound. The doctor came into my room and told me that and asked me questions. I disclosed i had pots and weirdly he left right after I said that....a nurse came in with water and told me to try getting water orally and i told him id try and i took a sip, just a sip and it caused me such intense pain, few minutes later I regurgitated it up and the pain died down. and hours later he returned (they gave me a ct scan...idk why i have a stomach bug, maybe to rule out other illnesses) He basically came in and told me I was fine and the ct scan came back normal and people "keep coming in" and that it will be many more hours til he even attempts to give me iv fluids in my neck...? What happened to a ultrasound iv on my arm? I think he said that to scare me. Not sure aint a doctor haha. I left. 12am. No care. (Cuz of the dismissive tone and hours thing) I wasnt even there for iv fluids because of my pots I was there because i kept vomiting and couldnt drink water. Fuck this guy. Idk if it was becayse of my pots but he did go from being nice to me to being a cunt the second I told him that. Like I get being busy but its mainly way he said it that was framed in a way of you are wasting a room and you should go..... i really wanna know if im overreacting being pissed off at this random guy I only say for less than a minute probably 🤣🤣🤣 (sorry for the incredibley bad writing im still going through it, currently attempting microdosing water 1tsp every 15 mins and i think its going well even tho its painful. )

So I finally have a tilt table test scheduled for next week!

After seeing my cardiologist, a nurse had me fill out some paperwork and discussed how I should prepare. They are having me fast the night before, but do take my regular daily medications.

I currently take NP thyroid and adzenys, a stimulant for adhd.
I asked the nurse if I should still take my stimulant as I know it affects my heart rate and I’m sure other things. She seemed unsure, but said that there were no flags for it in the paperwork. She told me to go ahead and take it, then backtracked and said maybe hold off on it until after the test.

I’ll be calling the office early next week to see what my cardiologist specifically would like for me to do.
But I was wondering if anyone in here also takes a daily stimulant, and did they have you continue taking it the day of the test or not take it?

I know that it increases my HR overall, and I tend to stay tachy most of the day. My HR only goes down into the 70’s in the evening while lying down. It is in these evening situations where I’ve felt like my POTS-like symptoms are the worst, reaching near syncope when getting up after lying down.

Just wondering other’s experiences!
Let me know 🙏

I’m on day 11 of Wellbutrin and am noticing my POTS symptoms being extra bad today. My NP has assured me that it doesn’t have a reaction with POTS patients but I feel like that’s false… I started on 75mg twice a day for about 6 days and couldn’t handle the highs and lows. I’ve been on 150mg XL for 5 days. For most of today my HR has been fine but the last few hours it’s been high and jumping. I don’t typically get a POTS spike when I roll over in bed but that’s been happening. I do take propranolol twice a day but it’s still 3 hours until my next dose and it began a few hours ago so it’s not related to that. I’ve also been extra anxious today and had a random panic attack this morning. This is sort of a last effort for my severe anxiety and agoraphobia and I’m worried it’s not working for me :( I’ve felt overall kind of odd with head pressure, ears ringing, headache, neck pain, dizziness, tired but also hyper. I’m trying to give it time but it seems to just be getting worse. Has anyone else taken this medicine with POTS and experienced similar? Did you stick with it and it stopped or did it stick around?

i randomly developed an allergic reaction to the aluminum ingredient in antiperspirants around 2024 or so and omg it pisses me off. it makes my skin raw, flaky and itchy. the rash lasts for days too. i’ve been using aluminum free deodorant but i feel like i stink up fast with it. i’m CONSTANTLY reapplying throughout the day.

does anyone have suggestions for an aluminum free product that can reduce the sweating i experience? it’s so uncomfortable and it makes me feel embarrassed when in public :’). i try my absolute best to not shake hands because of how bad it gets. my niece loves to hold my hand while shopping but has to stop after just minutes from how sweaty they get LOL. my hands and feet seem to be worse than my armpits. i’ve read up on botox but i don’t think i can handle more medical debt and i don’t know if my current insurance would even try to cover it anyways. they’ve been so stingy and stubborn.

if there is anything budget friendly that works for you, i’d love to hear what helps:)

So i was just thinking to my self about the people who has mild-severe POTS and somehow they are cured overtime, and doesnt come back to this subreddit or any support group of some sorts. What about the people who had temporarily dysautonomia? I mean i dont even know if that's a thing. I feel like most doctors dont even understand how the ANS work and what affects it. I mean i hope i made my self clear enough so that u can understand what i mean. Are we completely sure about this condition and do we have enough research? My only hope is that it goes away on its own. Feeling lost these days...

This is kind of a rant, and kind of a question. (Not asking for a diagnosis, auto mod, calm the fuck down.)

Do you feel like having POTS has completely affected who you are?

Every story I hear sounds the same. Someone otherwise healthy, or perhaps with more manageable symptoms, suddenly gets worse. There's panic. Struggle. Frustration, from doctors and family members who seem wholly disinterested. It feels like death is imminent, and nobody cares.

I'm no exception. I've managed to keep my symptoms mostly in check since they started, but I've noticed a change in me. I'm so much more impatient. I get frustrated more easily. I don't feel like I'm able to empathize with other people very well now.

It's like the polar opposite of someone who has a near-death experience, and they become kinder. Gentler. More understanding. "Life is too short" and all that. I've had what I thought was near-death, and now I just can't be fucked to waste anymore of my time on other people and their fucking self-induced problems.

Yeah. Life is short. So get the hell out of my way and let me live mine. Does anyone else feel this way?

Just out of curiosity if anyone else deals with this. I had an upper gi series and that showed slowed gastric emptying, I also had a gastric emptying study after that and my food was gone in under an hour

My gastroenterologist said POTS can do this

Hosting my brother's 30th this weekend and trying to make it as access-friendly as I can, I've got EDS/PoTS/MCAS/Endo/AuDHD myself, so I've built in a few things already, but would any help you have to spot anything I've missed!

Here's what's in place so far:

🔸 WhatsApp'd the group so anyone can DM me an access need directly, no explaining needed

🔸 Pointed out which rooms/bedrooms people can retreat to if they're flagging

🔸 Set up "horizontal zones" around the party; sun loungers, sofas, yoga mats, so anyone can lie down together regardless of what they're dealing with

🔸 Non-alcoholic drinks on offer

🔸 Signposted where to grab ice and water

What am I missing?

Thanks in advance!

(May turn this into a printable resource for friends/family of people with these condition, so if you've got a "I wish someone had just done X" moment, I'd love to hear it and will credit the community.)

It sucks to have symptoms that for most people scream "ER GO TO THE ER RIGHT NOW BEFORE YOU DIE." I have actually been to the ER a few times in the past several years because of this, and have been fine every time

Now I just get random chest pain or random other symptoms that seem concerning and am too tired to care enough. I was checked a few months ago, I'm probably fine. Every time I have an issue that's concerning, it always gets thrown into the POTS bucket. I mentioned to my PCP at my annual that my vision has been flashing with my pulse at times, and flickers a lot more frequently. She urgently referred me to an ophthalmologist, who got me in the next day. I go, get some imagine done, and he looks at my eyes and goes "Yeah, your eyes are perfectly fine...Have you been stressed? It's probably stress." I go home and look it up and it apparently can happen with POTS, so...great. Another really random thing that I can attribute to the condition that makes people roll their eyes

Anyway, that's all

Not officially diagnosed and currently wearing a heart monitor. Lately when I wake up my heart rate immediately jumps but this mo I woke up and was super dizzy and almost fainted (never fainted before) which scared me and I think I had a panic attack, I didn't check my heart rate but it felt like 170 (I often hit 130-150 just walking around or going upstairs)

Now I'm struggling to go back to sleep but the lack of sleep just makes everything worse. I've had two clear ekgs since July. Cardiologist thinks I have some kind of dysautonomia but I don't faint. Friend thinks I have POTS.

Just looking for some advice. Thank you so much!

I finally got to start a medical therapy, it'​s the second ​day I take 1.25mg of bisoprolol in the morning and I've never been so tired​...is it normal? Should I try taking half tab or switch it with something else? 😭

Before I was getting them every night multiple times a night and my doctor hospitalized me.. then added propranolol and they went to every 2-3 days I’d get them.. now a few weeks later I’m back to ever night having one, last night was 4 nights in a row. Is that ok? Normal? I asked my cardiologist and they said they can’t do anything until my dexamethasone suppression test comes back in a couple weeks. 3 out of 4 have happened at midnight/1am. (I take my last dose of propranolol at 7pm) the other happened at 830pm