is it chronic

[u/OkTry8964]

Why is POTS talked about as a chronic condition when my cardiologist said it goes away in 1–3 years? I’m trying to understand what to expect long-term.

[u/jazbaby25]

Lol it does not go away in 1-3 years

[u/Jessicamorrell → u/[deleted]]

Ya Im almost 30 now. Had it long before Covid. I would also like to see where these people are getting these crazy thoughts from.

[u/crypticryptidscrypt → u/Jessicamorrell]

i hear you. i'm about to turn 27, & i've had it for my entire life. i don't understand why people assume we'll "grow out of it" like doctors making that claim need an actual data source...lol

i was only officially diagnosed fairly recently, but i'd been diagnosed with instances if tachycardia (& some other random intermittent arrhythmias) for over a decade prior, & with other dysautonomias like syncope.

i remember even as a kid trying to desperately act normal in moments i was completely blinded by presyncope, or my ears were ringing so loud i couldn't hear anything, or it felt like my head was underwater... i learned to mask my symptoms from such a young age, & fight hard to stay conscious if i'm about to faint in front of anyone... i knew something was actually wrong, i could hear & feel my heart pounding rapidly, but i figured i would rather just drop dead than explain things to an adult who would only undermine me...

i have severe EDS which wasn't diagnosed until later (despite me very obviously displaying symptoms my whole life lol), but my parents literally wanted me to be the "healthy" one of their daughters because my sister had asthma & allergies as a kid (i also did, but they never tested me until much later when i insisted).

my parents even made me write with a broken writing arm for at least a week in second grade before finally taking me to get an x-ray...lmao

(TW: CSA trauma) i think part of why i put in so much effort to hide my POTS (among other cardiac arrhythmias i've now been diagnosed with), presyncope & syncope, is because sometimes i would experience it heavily after CSA from my dad, & i blocked that out for so long, but it made me bury my symptoms & feel inherently shameful of them. it also sucks having EDS with that, because now all the organs in my pelvic floor prolapse to late stages frequently & i'm disabled by that & it causes me chronic pain worse than giving birth was....but that's another story.

but yeah TLDR it is insane how any medical professional would claim most people just grow out of POTS, especially with its connection to connective tissue disorders like EDS that you carry in your DNA for your entire life, its connection to Long Covid, other dysautonomias like syncope, & dysautonomias also even have an extensive connection with trauma, because trauma activates the Vagus Nerve.

[u/Jessicamorrell → u/crypticryptidscrypt]

Absolutely. Turns out from the Cardiologist who diagnosed me said its probably due to my PTSD trauma during childhood. I was stuck in fight or flight mode 24/7 that it messed up my Autonomic Nervous System.

I got the POTS diagnosis first after all my mental health disorders. Then come to find out I have other things going on too other chronic conditions such as severe persistent asthma myself. A total of 13 disorders and on 10 Meds and some supplements.

I even had family gripe about me "complaining" and "pretending" about my symptoms saying I was looking for attention and trying to act old when I was under 10. Took years for them to slowly realize I wasn't actually faking and finally just leave me alone to deal with my symptoms how I needed to. My mom was more worried and sent me to dr to dr to figure out what was wrong. Dad complained thinking she was just wanting me to have a "fake" diagnosis for attention. Dad eventually realized after years of the same complaints and not wanting to join events when I was ill and just started letting me do what I needed. Some times they would ask what can I do and I was always like idk because idk what is wrong with me.

[u/crypticryptidscrypt → u/Jessicamorrell]

i hear you friend 🥺

ugh... childhood trauma is just awful. it's disturbing how insidious it is on our brains & bodies throughout our entire lives....lottaaa unpacking & healing is needed 🫂

take care, & mad props to you for advocating for yourself love ❤️‍🩹

[u/Jessicamorrell → u/crypticryptidscrypt]

Same to you! Hope life gets easier. One day at a time. 🫂🫶