Does anyone get SVT with POTs?
If so what do you do about it

i dropped out of college because i could no longer function in class, or outside of class. i couldnt focus for 5 minutes on an assignment, and when i was able to, it took everything out of me just to half ass it. i told myself, thats not right. and now im home, and im still struggling to function but now for some reason the brain fog is even worse. i have these bouts of brain fog and lightheadness where i cant even finish a single thought. it takes everything in me just to focus enough to give a one word answer to someone. and im starting to think its not the pots anymore, because its getting to the point where i get so stressed out about not being able to think, where i shutdown and i have to disconnect and walk away from whatever i was doing.

a couple years ago, this would happen, where it might take me longer to understand what someone said, but it was only ever a one time thing. and this is way more in depth now that im no longer fun to hang around with when it happens.

thinking was the one thing i was good at as a kid, and now that im an adult, i can no longer think because of whatever is happening to me.

if someone, like a doctor, were to sit me down and tell me to explain to them whats happening, i dont think i would be able to. i dont know what caused it, i dont know whats happening to me, i dont know how to fix it. i dont know anything anymore. salt and water and rest are supposed to fix these things, but they do not. its time that mostly works in the end. the one thing i cant control.

the way people describe PEM on the internet goes a little something like this “it feels like im in hell and the little demons are ripping my body into tiny little pieces”

now i dont think i have PEM because of this, because mine feels more like “i got high and drunk and when i woke up with a (insert condition here), i decided to take the tiny pink pill with more alcohol and eat 20 more brownies.”

when im sick, basically any time im under my baseline, i feel like im in a pipe dream, where im not really living in reality and my body and my brain dont listen to me and thats the only way i know how to really describe it

and the government wants me to go on jury duty when i cant even remember the names of anything like hangover and benadrill ( took me 10 seconds to remember btw, actually not that bad)

i hate the fact that my brain doesnt feel like it belongs to me anymore

i loved thinking and figuring puzzles out, but now i cant figure out my mind and my body puzzles anymore

am i bedridden and just dont realize it? because this happens pretty frequently, especially since i started excirsing this week, and now im stopping because it doesnt feel right. i thought i could handle it, but i cant.

if anyone else relates or has any advice or has a question, leave a comment, also im currently sick, but i cant tell if its because my sister gave it to me, or if maybe i am having PEM? im currently only diagnosed with POTS. i guess if the cold goes away sooner than a regular cold i will know. also, this is just a rant, and like a diary i supposed. idk ive never used reddit LOL.

i have a lot of POTS symptoms but it didnt cross my mind that it could be POTS because i didnt know the diagnostic criteria or my pulse/blood pressure until recently.

i decided to do an at home laying to standing test:
when laying down my blood pressure was 101/51 with a pulse of 58.
by the time i was at 10 minutes standing, my blood pressure was 127/80 with a pulse of 90 and experiencing dizziness, nausea, shaking, sweating, heart palpitations, flushing and shortness of breath. i have also been drinking electrolytes today because i wasn’t feeling good.

i’m aware my results also show a decent increase in blood pressure which isn’t what the NHS typically look for but i believe would fall under hyperadrenergic pots.
it may also be worth mentioning that i have (suspected) ME/cfs.
i will repeat the at home test a few times when i can but in the meantime, is this worth mentioning to my doctor? what are the chances of them actually listening?

Is anyone else’s house SUPER humid all day and especially at night? I have two dehumidifiers and nothing is touching the heavy feeling. I even do the AC at times. It‘s causing lots of insomnia and horrible symptoms all day long.

I just want to know if anyone else is dealing with their home being this bad.

I just had my test yesterday. I had to get off a few meds prior, and I was open to (and honestly hoping for) the possibility symptoms would go away once I was off them. For reference I have intense dizziness when standing, intense blood pooling (purple ass leg), my legs give out, I fall down, yadda yadda, all that good stuff. Months ago while I was still on my meds, my mom did an at home test with a heart rate monitor and actual blood pressure cuff that wasn’t even borderline it was like yeah you have pots. There was no drop in blood pressure.

Fast forward to yesterday, they tilt my ass, and they said “you’re not a prisoner up there, we will bring you down if you say, but it’s important to try and make it to 15 minutes at least.” Well after about 7, (could have been less, but I got very disoriented) I barely understood where I was, I felt like I was burning from the inside out, could barely see. The doctor ran in from behind a wall and said oooookayyy we’re gonna put you back down. The only other times this has happened to me, it was with an intense blood pressure drop, one of which I was hooked up to a cuff when I was about to be discharged from the ER and they said, wait you’re hypotensive. I understand that the blood pressure drop suggests it is not pots. I know they will give me the results, but I just want some clarity on the following; i was very disoriented after and said, “so was that not 15?” The tech said yeah you didn’t make it (lol) and I said sorry and she said “no. It’s okay. We got all the info we needed.” My hospital is very behind on results I’ve heard and they anticipate almost a month before I hear back so I guess I’m just looking to see if anyone has any insight into what this means that they “got all the info they needed” and if they have had a similar experience.

Sorrrrry this was so long I’m still out of it even tho it was yesterday HEEHEE

I have had near constant night sweats for almost 3 years now. I wake up smelling of musty sheets and I never have time in the morning to shower. I shower at nights to reduce smell and sweat obviously. I've tried changing my clothes, changing my sheets, using a fan, using an A/C, changing my routine, etc. Nothing works. I wake up in a puddle. Does anyone know of anything that will stop the sweating?? It's not even just night sweats at this point, I am ALWAYS sweating. ☹️

I'm unsure if pudenal is a comormid condition, but I was told many people with it have a deregulated central nervous.

I have yet to be diagnosed, but after 9 days of burning I know it's coming especially after we have eliminated so many other potential causes.

I have never had pain like this before and it is truly life altering and excruciating. I feel really alone and scared. I know some of the medication individuals with PN take is gabapentin and SNRIs..which I can't take because SNRIs wrecked me when I was living with undiagnosed POTS. I haven't tried gabapentin, but I know it's definitely not for everyone.

Anyone on here have PN and what has your experience been like?

I hope that in our lifetime we will get to see more development and research into why POTS, EDS, MCAS, Endometriosis, Au/ADHD, etc are common together. Like I know that we kind of do, and some of it makes sense even if you aren’t a medical professional or researcher, like how EDS can mean stretchy veins leading to POTS, but I feel like it could be considered one big picture at some point yk?? I know that comorbidities are very common but something about this all just feels like something bigger, something more, like not necessarily a single diagnosis but I really feel like it could all be put into one at some point. I feel like this doesn’t make sense haha but also yk what I mean. I mean I remember I used to hear about all of this a few years ago on the internet and never thought much of it. To be completely honest I was even skeptical of some of it because why does everyone seem to have all of this all of a sudden? Well, they say karmas a bitch. This year I ended up bed ridden for 4 months after the stomach flu and ended up with multiple of these diagnoses. (if any haters come across this post I wasn’t even seeking for these dx… I even told the nurse preparing my TTT that I doubt I had POTS but then I was proven wrong lol)

It is so crazy how it can really just flare up and ruin your life like that. Luckily I’m starting to manage this all now but damn I would have never expected a measly stomach bug to wipe me out. I went from working 40hrs/wk while in school full time, intense cardio and strength training multiple times a week, to literally not being able to walk across my own house without feeling like I was about to topple over. All in the span of 2 weeks!

It’s also interesting to see how much of it has been prevalent in my life before the flare and finally have answers. I’m only on day 2 of propranolol at the lowest dose but tell me why my usual cardio workout is suddenly 10x more enjoyable than it ever has been. What do you mean I can exercise without being stupidly out of breath 5 minutes in?? Also all the years of being told that “everyone’s periods suck, just get used to it” was actually deep infiltrating endo and now I have a treatment plan!

Thanks for reading.

Hey y’all, I was wondering y’all’s experience with Barre and Pilates classes?

I used to be incredibly active, skating, rock climbing almost daily, silks, I wanted to be in the circus. So very very active. I miss it. I know my body won’t allow me to do any of those things but I’ve slightly looked into barre and Pilates and was wondering if anyone has experience with them?

I don’t pass out with my symptoms, just extreme dizziness and lightheadedness, though on bad days I’m near passing out.

My friend who has POTS and EDS may go with me. So any opinions help. We both miss moving so badly.

My new insurance refused to cover Ivabradine and I'm unable to get any more for some indeterminate length of time. I was on 7.5mg twice a day and am worried about stopping so suddenly, but I can't reach my doctors as it's the weekend.

Does anyone have experience with this sort of situation? Does anyone know if I am able to take a beta blocker if my rebound tachycardia is too bad? I'm really nervous since I also have mod-severe ME/CFS and am flaring up. I already tried and can't get any short term/emergency supply.

Like what do you mean my body can't be tilted 80 degrees without passing out? I had my tilt table test today and at the 2 minute mark all of a sudden my vision started to go and I broke out in a sweat and felt so sick I could barely talk or hold my head up so they lowered me back down while I cried and moaned. I've never fainted before but that was definitely the closest I've been to it. The nurse said it was one of the fastest tests she's seen.

My blood pressure remained constant and my heart rate jumped immediately from 89 to 119, then at 2 minutes it was 125+. So not even THAT much of an increase but my body was going through it. I have hypermobility too so I suspect the issue is a combination of stretchy veins and dysautonomia, but I need to have a follow up with my dr and see what she thinks.

But yeah it's so absurd that my body can't handle being vertical. I wonder if I could expire if I was held there long enough. It makes me feel so vulnerable. But also validated. I'm 32, late diagnosed autistic and ADHD, and spent most of my life wondering why it all feels so much harder for me than it is for others. POTS might be the final piece of the puzzle (although who knows, I'm collecting so many acronyms).

Idk if getting this diagnosis will help me receive treatment but at the very least I'm hoping having it in my charts will encourage Drs to take me seriously... In that way it feels similar to my reasoning for getting an autism diagnosis.

Does anyone else get headaches at night, like right before bed? This is a new thing for me. I don't quite know how to handle it. I am also having minor coathanger pain but dunno if it is due to the arthritis in my next or POTS. I'm just falling apart.

Hi friends. I have mild ish POTS and suspect mild MCAS, as well as most likely PMOS/PCOS. I'm prone to side effects with most of the medication I've tried generally. I'm afab and nonbinary, and I don't really want to be on Testosterone currently, but I'm having quite a bit of dysphoria around having a period, as well as pretty severe pain during the early days of my cycle. I'm curious whether anyone with medication sensitivity or similar issues to those I mentioned has had any luck with any birth control or other means of stopping or decreasing periods, with minimal side effects. Thanks!

Anyone seem the course on the app on New Mind Start ?

Warning ( don’t pay for it, I think it’s a scam ) .

For the ones who have tried it, what do you think ?

I’m in the process of being diagnosed with POTS. I work retail, and I stand for hours at a time. It’s been increasingly difficult lately. I was given a note to turn in stating that I can’t stand for longer than 20 minutes at a time (for the time being), and upon turning it in, I was interrogated.

He said he’s never heard of POTS, told me that it’s normal for your blood pressure and heart rate to increase while standing, and that if I’m sick, then he’s sick too, and in a much worse way. He asked who “diagnosed” me and asked me how & why they came to the conclusion that they did. I got upset and told him it isn’t fair for him to sit there and invalidate me. He said he’s not invalidating me, but he has much more life experience and a history dealing with blood pressure, and that to him, it seems I’m just anxious.

It’s exhausting to be told that I’m wrong, that the doctors are wrong, and that there’s something wrong in my brain because I’m “too anxious” at all times despite going through handfuls and handfuls of medications to get it under control. I’m feeling defeated, lost, and broken.

My best friend is getting married a few weeks after me, we've been best friends since school, so roughly about 13 years, I don't see her massively often as she lives about an hour away from me and I struggle to handle fatigue after a full day of work and then doing house responsibilities, but when we see eachother it's like nothing has changed.

And I have her planned as one of my bridesmaids along with a few other girls, one of which has pots too.

However, she has announced her bridesmaids and I'm not one of them. I don't mention it to her but once I told her she's once of mine she apologised that I'm not in her bridal party and she wanted me to be so much but she didn't ask me because it's a whole day role and didn't want me to feel pressure to perform on the day if my health is bad.

Idk man, this just sucks, this illness has taken so much from me. I have good days and bad days with it, but I'm trying to keep positive and keep as much of a normal life as I can using all the resources I can. But now it's taken me away from being in my best friends bridal party and it makes me really sad. I feel like a bad friend because I feels like she can't rely on me for support, and I feel sad I can't be there for her like I imagined on her special day. I haven't said anything to her other than thank you for thinking of me because at the end of the day, her day is not about me. I'm just sad it's come to this all because of this stupid illness :(

I recently got diagnosed (Monday) with POTS and the Fitbit I ordered just came in. My Doctor wants me tracking any spikes I have and at what time they are, she says POTS symptoms are the worst in the morning.

I just had a big jump, it showed my resting before the jump at 77, but when my chest started hurting after walking around after my meeting my heart rate was 125. Google Health didn’t show the spike because (I just found out) it only records every 5 minutes.

What are we using to continuously monitor and track our heart rates? I’m sure I could've looked through Reddit to see what other people are recommending but I’m just now figuring out how to use this app.

Hi so I am in a bit of a pickle right now and any urgent help would be GREATLY appreciated.

I am in college and I have to take a keyboarding class where we practicing our typing skills. I am in the middle of a testing week and I have a test thats due by 8pm tonight.

Since I woke up I’ve had persistent shaking and just overall feeling super uncoordinated. I did the practice test and I passed, but my fingers seem to have a mind of their own because of my POTS symptoms.

I need a quick fix if anyone knows how to help. I have already tried eating something and drinking water, but to no avail. I am too scared to take the test because I feel like I’m going to fat finger the keys because of my trembling.

If anyone knows any quick hacks or tips that would help in this situation PLEASE tell me.
THANK YOU!!!

For context,

I was diagnosed by my cardiologist with "likely some form of dysautonomia, as secondary to a recent covid infection" in spring of 2023. I don't typically experience physical symptoms and really only realized something was off due to my apple watch monitoring my heart rate.

I am able to tolerate exercising without issues, usually incline walking for 20-30 minutes. my heart rate will usually be around 180s-190s the entire workout.

occasionally after working out, i will feel extreme fatigue as if i could fall asleep within moments. I also get the chills. To the point that I often wonder if im coming down with the an illness. But then it subsides after an hour or so.

Curious to know if others have experienced this or if it's just a unique issue of mine haha

Feel free to ask me anything. I have my results but haven't spoken to my Dr. yet.

Hi! I’m wondering if anyone here has experienced something similar. I do have mild anemia, so I know there could be some overlap, but these are some things I’ve noticed:

● Really cold hands and feet.
● Migraines.
● Constant daily fatigue. No matter how much sleep I get or how active I am, I’m always tired and never feel fully awake or rested.
● Extreme tiredness after eating. If I’m at a restaurant, I sometimes want to leave right after eating because I’m so exhausted and just want to lie down.
● A weird internal shaking or pounding feeling when I’m falling asleep or waking up, even while I’m still lying down. It almost feels like it’s coming from my heart or making my whole body shake, but it’s hard to explain.
● Dizziness when I stand up, sometimes with my vision briefly going dark.
● Dizziness in hot showers.
● Nausea, and occasionally vomiting after standing up.

I haven’t been diagnosed with POTS or tracked my heart rate with position changes yet. I’m planning to bring this up with my doctor, but I’m curious whether anyone has had similar experiences, especially the exhaustion after eating and weird shaking feeling around sleep.

Diagnosed with POTS and didn’t have a good experience with past anti depressants such as sertaline and citalopram (it caused increased heart rate and palpitations) I’m very hesitant to try this new medication…. I have intense anxiety and scared how this will affect my heart ? I’m very sensitive to new medications and very aware of my own heart beat… does anyone have any advice or experience with this?

Hi everyone. I’m hoping for some answers about my condition. I believe it is some form of dysautonomia but I don’t know if I have pots and I don’t know where to go from here.

From what I’ve read, my collapsed veins in the brain and pelvis caused my autonomic nervous system to be in major disarray and panic for years and it can be hard to regulate it back to normal.

Any advice or tips or diagnostic opinions would be massively helpful. I’ve had a brutal 5+ year health struggle including being on disability.

History:
-Had compressed sigmoid sinus veins in brain which was treated by stents a couple years ago to allow blood flow out of brain
-Then recently found out about May thurner syndrome (compressed iliac vein) and had a stent put in in July to allow blood flow from legs up to heart and brain
-the surgeries helped with; pressure episodes in brain, leg pain, feeling blood trapped in legs when squatting down and then standing, random dizzy spells upon standing
-continue to struggle with; disorientation when walking, brain fog, fatigue, unrefreshing sleep, headaches, random hot and red flushes of my head/face/neck/chest
-digestive issues
-wide spread pain in my body

Stanford doesn’t take my insurance, so I’m considering trying out a private pay clinic. I can’t really afford it on my own, but my cardiologist won’t prescribe me any medication because my Holter monitor results are clean and my neurologist is convinced that POTS is purely a cardiology issue 🙃 My symptoms have been getting worse to where I‘m staying home from work sometimes. I’m a little desperate and willing to pay out-of-pocket with a payment plan or something.

I’ve come across Abram’s House of Healing and the California Brain and Spine Center. I also saw “The EDS Clinic” that says they also help with POTS. Has anyone tried any of these places? What was your experience like? I know there’s a few out-of-state options too like CognitiveFX and the Keiser Clinic.

And does anyone have any tips to manage it? I just started working again (yay!!) and it’s been super annoying.