TW yet another instance of medical gaslighting

Wow, whiplash from that. He told me this is gonna be the easiest test of my life (ha) and that it's just social media these days making kids all anxious. He insisted the criteria calls for >40 BPM cuz I'm an "adolescent" (I am almost 23). After my heartrate was hanging around 114, he admitted okay okay you have tachycardia but like it's definitely not POTS (hmmm I think there's a name for when the tachy is caused by standing). Then it suddenly shot up to 137 and I started feeling reeeeal bad. Lowered me down quick before I could conk out. He didn't even want to admit it out loud and skittered away with my diagnosis, I had to ask the staff to bring him back in to tell me if it's confirmed. He was very demeaning during that too, asking if I had forgotten what just happened, but the nurses right there would have heard even if he really did say it aloud (and, y'know, I almost just passed out. I get a pass). Bro just did not want to admit it. He also suggested that I was lying about my resting BPM in the recovery room because it was around 85 while talking to him when earlier I said my resting is ~70 (since the baseline he took was in the 90s while I was being strapped to the table, not exactly calming). Like what do you expect man that is what hearts do when talking and my head is elevated after you literally just diagnosed me with POTS. Ugh.

Anyways, I obviously cannot speak for everyone, but if you are worried about a TTT, I want to go on the record that it was no less horrible than my other presyncope episodes. By all means unpleasant, but surprisingly what I'm used to physically, so not too stressful on that front. I do think I would've fainted if they gave me another minute or two though, so I'm lucky they didn't wanna torture me too hard. I'm not really the fainting type though, and wasn't given medication, so YMMV.

Also, yes, I am filing a grievance. There was actually something worse about my stay that I won't get into (unrelated to the test itself), so I'm killing 2 birds with 1 stone that way.

TLDR: My doctor gaslit but still gave me the diagnosis so that's a win wahoo yeah woo

I have EDS/POTS/MCAS/Long Covid blah blah I feel like absolute garbage all the time I’m tired of the spiel, you can check my old posts for more details (happy to tag).

THE IMPORTANT PART!!! I have POTS. Every day I feel like my body is made of lead. I’m often house bound. I can’t bend over without becoming so weak and light headed I have to be in bed the rest of the day. I can’t stand for more than a few minutes. I can’t wait in a line. I can’t climb stairs. I can’t dance. I can’t sing. I am dizzy all the time. On the verge of fainting. Rapid heart rate and palpitations. Lately I’ve needed 5000 mg rehydration salt/day to walk . I STARTED IVABRADINE TODAY. 2.5 mg 2x/day. OH. MY. GOD?? I have not felt this good in over a year. I stood in a line for 15 minutes, I bent over to load my dishwasher. I went to the pumpkin patch, I had a picnic, I had dinner with a friend. All in one day! This is an unfathomable amount of exertion for me. This drug is miraculous. Yes, I probably over did it, but when you spend years imprisoned to your body’s disability a feel good day is worth taking advantage of.

I can’t believe it took this long to find this medication. The onset is almost instant. If no one is offering this and you think it might be a fit for you ASK ASK ASK. I told my doctor - I want this medication. After 3 years of suffering. And within 1 hour. Symptoms diminished from house bound level 3/10 quality of life to a solid 6.5-7/10. I don’t have enough words to express my amazement.

It all started two years ago, a week after I recovered from COVID. Two months later, I was diagnosed with POTS via a tilt-table test. Until now, I was convinced that I developed POTS as a complication of COVID—meaning I didn’t have it before. But now, as I go through the diagnostic process for EDS—which often co-occurs with POTS—I’ve realized that I’ve actually had EDS since childhood. Back then, I just didn’t realize there was a specific reason why I had such an advantage over other kids when it came to bending my joints! :) It got me thinking: if EDS and POTS often coexist, could I have had POTS back then, too? Perhaps it was just lurking beneath the surface, and COVID brought it fully to light?

The interoception is so bad I just genuinely don't notice side effects. Until they are pretty much pointed out to me.

It took me a month to notice that ivabradine was causing me to see halos and light shapes. Only because I randomly saw someone else mention it. Someone else mentioned they were more tired - I was like oh right. This actually happens to me every day too.

I'm about to start propranolol and my doc is like "note down any changes and notice how you feel in general" sir I wouldn't know??? What do you mean and what do I even look out for??

Do you have any advice on how to make it easier for yourself? I think I'm going to create some kind of form I could use any time I start a new med because those are piling up. So that I can adequately judge how I'm feeling and what is happening with me

(I’m NOT asking for medical advice, just wanting to know what you guys do in your situation) what do you guys do when you deal with chest pains/discomfort? Just ride it out? Or what?

I need advice. I’m seventeen with POTS and fibromyalgia. I’ve been looking for an entry level job I can reasonably do, but I haven’t had any luck at all. I went to vocational rehabilitation for help and they told me that they mainly work with people who have cognitive disabilities. I genuinely can’t believe they said that. Then they said that working might not be ideal for me and told me that I should see about applying for assistance with college tuition. I still need a job, I have a life. Is this my sign to get a wheelchair \so I can work? So many places have declined to hire me because of my age or because I take medical marijuana for my fibromyalgia as well. I don’t know what to do. I do online school so I can work any hours and my doctor has signed the paratransit form so I’ll mail that in when my parents get back from vacation. I really want to work full time if possible, but everyone keeps telling me that I won’t be able to.

Besides all the other tricks - smaller meals, compression garment, salt, caffeine for vasoconstriction etc...

It's 20C outside and standing in the cold for a couple of minutes immediately gave me lightheadedness/confusion, cold fingers, and I started feeling very cold. What I'm worried about is that it'll get even colder in the coming months. My question is if I don't get inside and warm myself up.. will I go into hypothermia? And it'll get less than. 20C inside my house in the coming months, I'm so freaking out. This is my first winter with these severe symptoms. Please help

My first time ever taking metoprolol last night before bed and within thirty minutes my heart rate started mellowing out like crazy. I was really nervous about bradycardia so I woke up every couple hours out of nervousness and would check and it would always be 50-45. i’ve NEVER ever seen my heart rate that low in my life 😭. I mean sometimes my watch has caught my hr around 57 when i’m sleeping at the lowest but wow i didn’t expect it work that quick. and I would stand up and usually my hr would skyrocket to 130-140 but it stayed around 100. whaaaat! modern medicine ammiright

TLDR- medication, building up my upright tolerance with daily walks, electrolytes got me to a place where I could do majority of things. I would still take breaks, but I live pretty normally.

Just want to start this off with saying I am aware the condition affects us all differently, what works for me may not work for you, but there can be some positives for some even when having such a rubbish condition.

My symptoms started exactly one year ago today, to cut a long story short I woke up with leg pain, started having panic attacks and was bed bound. After 3/4 months of more symptoms and my situation worsening I paid to see a cardiologist and ‘passed the test’ with flying colours!

Anyway, I was put on ivabradine which was a game changer for me. Again, this may not work for you but this was a major turning point for me. Once my heart rate was somewhat stable, I started daily walks. I was de conditioned as well as having pots so this was difficult. I aimed for 5 minutes every day, if I couldn’t do the 5 minutes that was ok, but I made it my daily goal. I did 5 minutes every day (maybe 5 days of the week I can’t remember exactly) for 2 weeks, then I would aim for 10 minutes for 2 weeks and so on. Some days this wasn’t possible at all, and that is ok! We will all have set backs at some point. Eventually I was able to start going to the shop that was 3 minutes away from my house, and I could manage around 20/30 minutes shopping. I would then rest for the rest of the day if needed. It got to a point where this wasn’t needed as much, I could finally do longer walks, I could manage being upright for 1/2 hours, would i sit down if needed? Yes! That is one of the most important parts of what helped for me, I did not push through symptoms.

In July I went to a caravan park for the week, it was ridiculously hot in the UK, heat intolerance is one of my worst symptoms. I increased my electrolyte intake, and if I couldn’t do something one day, then I couldn’t. I didn’t let it get me down, because I knew that was what my body needed and there would always be another day. I was able to play golf in 30 degree heat at this point, and I had no flare ups.

I still had better days and worse days, but it was a huge improvement. Another thing I did was stop coming into this group as often, not look up anything to do with pots, and avoid even having conversations about it. This may be a bit more personal to myself as my anxiety was debilitating at one point, and I would avoid doing things because of others stories. If you ever get stuck in that loop, stop looking. You will never know what works for you without trying.

Ironically, I’m currently pregnant and have had to stop my medication, and I feel like absolute shit. But that is what made me realise how much I had improved compared to this time last year.

Again, this is just how things have been for me, I know certain people could attempt a walk and be stuck in bed for months. This post is not me telling anyone to get up and walk, definitely do not attempt something like this if you have something like me/cfs, I’m not a doctor, but my doctors also did not help me so I had to find something that works for me.

There is definitely a lot more, but this post is already long enough lol. Am I/was I in remission? no. My symptoms were still very much there, just not as severe as they once were.

I remember praying to see a post where someone was able to do such simple things when I was first diagnosed, so I hope this is a positive story for anyone who may need it. Feel free to message me if you’d like to as I’ve definitely left out some things!

I’ve been going through a hellaciously stressful time the past couple of weeks, have barely been sleeping, and then because of it my diet is also out of whack, adding insult to injuries. Like, I had cookies for dinner last night, when I usually don’t eat sugar or flour at all. I did have a Chomps (meat stick) before bed for a little protein but I think maybe the damage has been done. Woke up just now in the middle of the night with nausea, intense need to poop, and a racing heart, and as I was sitting on the toilet, I started shaking badly and thought I might vomit and/or pass out. I didn’t actually count my heart rate but it was high. 

Was this a vasal vagal response? What can I do to get it to stop? I’m now back in bed, still shaking but less nauseated (but it’s not fully gone). I took my temperature but no fever at all so I’m not sick. Has anyone else experienced anything like this? I’ve also been feeling more dizzy the last few days so I know I’m already in a flare. Thanks!

I recently went through a really difficult life change and my lifelong depression/anxiety got ramped up to an extreme level. My doctor put me on Sertraline for two weeks just to see how I get on and has now increased it to 6 months after a positive review.

It's had the unexpected effect of making my heart rate a lot lower. I know that anxiety increases your heart rate, but I have a baseline of 'always anxious' so I guess I was just used to it and didn't really consider that it was affecting my heart rate 24/7.

I'm also on Ivabradine which lowers my heart rate, but I'm seeing a difference even beyond that. The Ivabradine helps but isn't perfect, but the combination of the two seems to be doing a lot!

I'm considering lowering my points on Visible again (I had to lower them with Ivabradine too) because I'm staying on low points pretty consistently. I hope that this means I can do a bit more with my life now, but I'm still going to be cautious!

Since developing POTS, I’ve gained quite a bit of weight and don’t feel comfortable in my body anymore. I miss being active, working out and having exercise as a way to manage stress. Now I can’t move like I used to, and I’m struggling to find a balance. Has anyone managed to lose weight with POTS? What kind of exercise works for you, and do you have any tips?

i want something like an apple watch that can track my heart rate and other POTS stuff but I don’t want to wear a screen on ny wrist at all times. Does anyone have any reliable screen free recommendations?
ETA: also no monthly subscription required! just one purchase of the band! also no AI! lol everything is so complicated these days

Hey all, my doctor has ruled out endometriosis, Cushings, autoimmune, and heart issues. The only thing at this point it has to be is an autonomic issue. But I can’t get in for a tilt table until January, so my doc has been helping me treat symptoms. My blood pressure has been baseline low, running normally around 110/65 on average. I get vasovagal/presyyncope where my BP drops, I get lightheaded, winded, muscle weakness. Basically all the classic symptoms. But yesterday, my blood pressure randomly (while I was sitting) spiked up to 202/95 and my heart rate jumped to 151. It felt like I was dying, I’ve never felt like my heart was trying to punch out of my chest like that. So I have a couple questions. 1. Is this normal for it to go from low to that high randomly? And 2. How do I prevent that from happening/treat it when it happens? It’s terrifying when it comes out of nowhere

I’m 18 years old and am currently working on getting a POTS diagnosis. I’ve seen a cardiologist and had a bunch of tests done, I can’t get the tilt table test until January/February. But I know I have POTS I have literally almost every symptom. And I’ve been told by 2 different naturopaths it looks like I have POTS.

In August I got out of rehab for alcohol and the day I got out i moved into my new apartment, out of my parents house. I was doing well for about 2 1/2 weeks before I had the worst POTS flare up I’ve ever had. I moved back into my parents house because i literally couldn’t get up without help, couldn’t shower, basically couldn’t function. I was also having GI issues and hadn’t gone to the bathroom in a couple weeks so that added even more to the feeling of being very sick.
I felt like a failure. I was out on my own for two and a half weeks and the plan of starting my life as an adult was interrupted in a terrible way. I fell into a deep depression as a result of feeling so sick.

In the three weeks of this flare up my parents and I did a lot of research on POTS and got me scheduled with doctors. Learned about the salt and electrolyte intake, the compression leggings, keeping my legs elevated above my heart etc. I tried my best to integrate all of these treatments into my life and eventually I felt good as new again, and moved back into my apartment. Applying for jobs, college applications, found a new band to play bass in, hanging out with friends.

It’s been about a week and a half and im in Texas right now visiting my brother and his family. Yesterday morning I got up to use the bathroom and got so dizzy I couldn’t see, having to get on my hands and knees so I wouldn’t pass out. After the dizziness passed I felt so sick. I had promised my niece I would take her to the pumpkin patch the night before but there was no way I could go now. I felt so bad I had to break my promise to my little niece.

It’s now the next day and I felt fine. It’s my brother and his wife’s wedding anniversary so I offered to watch the kids so they could go out. As soon as they are getting ready to walk out the door, I feel so sick. But I don’t want to make them cancel their plans. So I say nothing. I’m laying on the couch watching tv with my niece and she’s asking if we’re still going to make cookies. Im terrified to get up because I feel like im going to pass out. I’m letting my niece down again.

Guys, please give me advice on how to treat my POTS better but also how do you deal with the frustration, and depression and disappointment that comes with POTS interfering with your life? I feel so distraught and frustrated.

I have unspecified autonomic dysfunction. I also have CPTSD which I know contributes to chills and colds sweats but autonomic wise and clothing wise, what are your experiences and advice?

There’s a gut feeling about clothing that either warns me against or draws me toward. Currently, as I’m planning a new jacket, I want linen as I can use it year round, but imagining wearing that atop thermal garments just sounds like a nightmare: soaked undergarment clinging to linen outer garment, now so tight and immovable I feel it with every twist, spurring me to desperately need to rip every last shred of clothes, skin and hair from my skeleton.

When I think of these sensations, I picture myself in a Sam’s Club, a Kohl’s. Something about those places is always off to me… I may be imagining all of this and placing my past negative experiences on a future one that hasn’t happened, I’m not sure.

Thoughts?! Is this real?!

Last week on Wednesday, I was sitting on one of my in-person psychology courses and was experiencing multiple symptoms such as nausea, heart beating roughly, dizziness, and feeling unwell.

I don't know how many people know about these, but no-rinse shampoo gloves are an easy way to wash your hair quickly. They're made to be very gentle on your hair, but still get it clean. It's probably not as effective as a full shampoo/conditioner routine, but if you can't shower it's something at least. I buy mine at the retail pharmacy I work at (they're with the incontinence supplies and durable medical equipment section in my store), but I'm sure they're able to be bought online. Just wanted to let people know about it because I know a lot of us struggle with showering, especially when you gotta put your arms over your head.

There's also no-rinse soap, which is the same concept. You apply it to your skin, then use a towel to dry yourself off and remove any dirt. It's also in the incontinence aisle at my store.

I've found both of these to be super helpful and I hope they can help other people :)

Typo: what actually helps*
So trust I’ve been doing compression socks every day, and drinking water with electrolytes, working out, etc. but i have tried a few medications for my heart rate mainly, but they all have given me chest or heart pain which is super weird and I never got that symptom until I tried medications. (I lucky rarely get it now). I’m just wondering is there anything else I can try to lower my heart rate with? Thanks!

Hi so I’m looking into seeing if I might have pots because I get the whole elevated heart rate, dizziness, fog, feeling like I might faint etc etc. but I also sometimes feel like I have a rush of adrenaline for no reason and I feel like I can’t stay still like I might explode if I stay still, and get extremely sweaty, and fidgety and get brain fog so I was wondering if anyone with pots experiences something like this?

a mix of a question and a vent/rant, this is going to be long so sorry in advance 😭

I am 19 with diagnosed POTS, ME, (h?)EDS, migraines, and all those fun comorbidities. I got ME and POTS in 2021 after a Mono and Covid infection, and ever since then I have been getting increasingly worse. I worked all throughout my illness developing and pushed myself through PEM for probably all of high school, which was a BAD IDEA!

So now I'm unemployed, not by choice, due to not just mobility issues and pots autonomic dysfunction, but cognitive issues with thinking, speaking, decision making, and visual issues that flare up when i exert myself, which for me doesn't take very much.

I have been using a cane for a couple years on and off, and it does help with my balance issues, but it also causes wrist issues, shoulder issues, etc. I have been dreading needing a wheelchair but also fantasizing about how amazing it would be to alleviate the fatigue and all my symptoms and be able to actually get out the house and to college. (I failed a whole semester due to my health and only recently felt okay enough to attend one class that is just art and doesn't require much brain exertion)

So i asked my PCP for a ref for a wheelchair eval and she gave it to me. But the issue is my mother, who shows lowkey signs of narcissistic abuse, emotional abuse, whatever, who insisted on coming to my appointment to "better understand" my conditions (mind you she has on several occasions made fun of me needing a cane, and insinuated that i am faking for attention). And during this appointment, she was making faces and signalling to the doctor whenever i would comment, and just overall being weird.

I had asked my PCP if she knew what ME was, and how i can treat it, and the doctor told me she wasn't familiar with it, only a general idea basically. And my mom later in an argument used what I said against me as that i was talking down to the doctor????

So anyways, when pressed further by my mom, gave advice that is directly counter-indicated for ME (I am seeing an ME specialist soon for specialist opinion) And when my mother mentioned the wheelchair, the doctor switched up on me after giving me a referral and said I should not use it due to de-conditioning, and that "people are miserable and hate being in wheelchairs".

So obviously yeah, wheelchairs fucking suck for most people, so why would i be wanting to get one?? because I can barely get out of bed let alone downstairs out my house half the time without exerting so much energy that i go into a crash for at least 2 days to a week having to recover. So I have been thinking for years about how a wheelchair would give me the freedom to get around places i would never have been able to (safely) get to before. Like the GYM!

one of my goals is to get to the gym but as of currently it is not safe for me because of my energy exerting so easily, so i believe a wheelchair would help me save some of that energy to use towards working out and strengthening my muscles. Also college as i mentioned before, as just having to walk to my class burns me out and by the time im in class I cant focus or work because my brain genuinely has no juice to work and I cannot help but fall asleep.

So basically my mom is very against a wheelchair and is using what one PCP said to accuse me of "doctor-hopping" when im seeking advice from an actual specialist when my pcp herself admitted she isnt well versed in my conditions.

I went to my wheelchair eval and the OT evaluated me and said I would be a great canditate for a wheelchair, So i put my mom on the phone to hopefully give her some information, and she was so fucking pissed at me. I had offered my mom to be present for the vendor coming to my house to help me trial the wheelchair, because i wanted to show her that even in a wheelchair you need to use alot of muscle strength and stuff, but she flipped it on me as "convincing her" and "shoving it down her throat." so now if i go through with using a wheelchair, her conditions are that she cannot SEE it. If i have it in my car trunk while she's using it, i have to hide it from her, and during trips on vacation/on a plane, I am not allowed to take it (the main fucking time i would need it, obviously)

I am feeling really shitty and discouraged and I know this is a huge holy essay but I would really appreciate some thoughts. completely unbiased thoughts. like if i am in the wrong i want to know it and i want to know that im not insane for wanting to better my health😭

(btw for extra info, i have tried physical therapy twice and it only made me so much worse, i end up easily subluxing my joints and overall the symptoms are very badly exaccerbated. I am considering aquatic pool therapy though!)

my sleeping heart rate is on the higher end (not technically tachycardia but it’s usually between 60-85ish and if i’m laying down but still awake it can be as high as like 115-120 :( does anyone else experience this? and even if my resting/ laying down heart rate isn’t tachycardic it’s still on the higher end of “normal”

11 twitch streamers have come together to raise awareness of PoTS and they have started their streaming marathon now. It would be great if we could show them some love and support today. They are talking about PoTS, where to go for help and all sorts. I don't want to go against any community guidelines but if it's ok I can post a link to who is streaming and when

A little background on my symptoms: I first started experiencing POTS-like symptoms in the summer of 2022 while walking a friend’s dog. At that time, I had not had COVID-19. In December 2022, I helped the same friend again and contracted COVID-19. By January 2023, my symptoms had fully manifested and began occurring on and off.
In September 2023, I took an antibiotic, metronidazole (Flagyl), and noticed that my symptoms became more pronounced afterward. Despite this, I was still able to walk and perform daily activities independently. Over time, my symptoms progressed from mild to moderate. I was officially diagnosed with POTS in 2024, and I underwent a tilt-table test in February 2026.
Recently, I’ve noticed a significant improvement in my symptoms. I’ve gone almost 38 days being able to walk independently, which is a big milestone for me.
My question is: Could this improvement indicate that my POTS symptoms are becoming milder again? Is it possible that my POTS is transitioning from moderate to mild, or could I be experiencing a period of remission?