#POTS
Tumblr posts tagged #POTS from across Tumblr — no login required.
“It’s Not POTS” Doesn’t Mean “It’s Not Dysautonomia” “Growing POTS awareness is a start, but ME/CFS and Long COVID patients need clinical pathways that recognize the full spectrum of orthostatic intolerance — even when POTS criteria aren’t met.” When “It’s Not POTS” Doesn’t Mean “It’s Not Dysautonomia”
rant I swear to fucking god if this woman gives up finding a diagnosis because it’s too hard or some bullshit and there might not even even be anything wrong that the doctors find or whatever I’m going to lose if I have POTS I’m not even kidding that’s what it is I meet literally every criteria for it INCLUDING one of the actual diagnostic criteria (+30 in heart rate ten minute thing you get it) I’m always weedy about self diagnosing medical conditions cause the body is so complicated and so many things can be caused by so many different things but especially after doing a lot of checks and stuff it’s like… what ELSE could it be??? I meet that criteria list bar for bar, the only thing I don’t meet is a massive spike in blood pressure (there was a rise, just not a concerning one) but that isn’t even a guaranteed symptom for a lot of people so if the doctor acknowledged the disautonomic disorder and then we go through the list of disorders in those catagories and I meet basically every criteria on that list except for like ONE can we maybe consider that I have that disorder? Like just a little bit? also the phone wouldn’t have even ticked me off if she wasn’t like “I want to start finding things to help for when we can’t get a diagnoses” (or whatever) and I’m like okay yeah sure that’s fair I guess finding ways to help something that can’t be healed is great, but then she pulled up with “I wanna try acupuncture FIRST” LISTEN I have no problem with acupuncture, I’ve heard it’s helpful for some people, I could even be one of those people, but FIRST?? First??? And then she started making a bunch of weird comments about like doctors and acupuncturists and doctors not really respecting them and how like doctors identify a problem and solve a problem so if there isn’t a problem they can’t help you and it’s like… yeah??? If there’s nothing identifiable they can’t fix it?? That’s how most things in the world work? But it was just a weird vibe about it idk
Dear friend, Nope nope nope. Cannot do it. Idk what is causing this soul crushing anxiety but I’m pretty convinced at the moment that everyone hates me and I feel like a burden on society. Was really trying the, “hey it’s ok to feel feelings” thing but it sucks I’m going to sphinx’s house we will see if it makes it better but texting her also made me think that I totally pissed her off so it’s a little scary. Oh… also I’m back on my meds if that has anything to do with it. But I feel worse than how I did a year ago. Can’t eat, can’t sleep, can’t workout, cant ask for help without second guessing myself, I feel like my anxious attachment is coming back to haunt me. Idk man. I got like an hour and a half of sleep last night. I feel bad, POTS is going insane. death is upon me.
I have had a migraine all day and I’m able to use a screen right now, SO: Small joys for today: I had a migraine but Betty decided she could help by climbing my torso and standing directly on my rib that is gently out of place (I fell down some stairs a number of years ago and it’s mostly fine but it drifts a little out sometimes still). And the pain was significant enough to actually distract from the headache pretty effectively for a little while! It’s an odd joy but it also kind of helped the rib! Podcasts exist So does delivery of medications AND food! A crisp diet coke was already in my fridge this morning It’s sightly cooler today I was able to stand long enough to do dishes And then later for long enough to put them away Betty ate her meds in one go!
It’s always so funny to me when the nurse at the doctors office says “perfect” out of habit when they take off the pulse ox. Like my love I’m just sitting here and my heart rate is in the 130s I don’t think that qualifies as perfect lol
POTS & Motor and/or Vocal Tics Posting this on here because it got removed from r/POTS There is a poll, please answer if you have POTS because I wish to make a dataset and do research. I’ve been diagnosed with hyperadrenergic POTS for about eight months, whilst having symptoms for about 2.5 years. I’ve had motor tics since I could remember, and since I started getting symptoms of POTS, they have increased in frequency + i have developed multiple vocal tics. Here is my hypothesis that I wish to research with this poll. Perhaps due to the nervous system being screwed up because of POTS, motor + vocal tics can be developed because the nervous system misinterprets input and ends up causing tics or something like that. This poll below is to collect data, and if you have any other thoughts regarding this, you can send me an ask, a comment, or reblog. The poll was going to be more detailed but I ran out of room so here is a link to a more detailed poll, if you fill out the tumblr poll, please fill out the more detailed poll so i can make two datasets Do you have POTS and tics? - StrawPoll Do You Experience Tics With Pots? I have POTS and motor tics I have POTS and vocal tics I have POTS and motor + vocal tics I have POTS and a Tourettes Syndrome diagnosis I have POTS and do not experience tics
I desperately need somewhere to think and i need to stop annoying my friends with disabled shit Im bouta use my blog for its intended purpose and blog if you dont care about POTS go away Literally im lying in bed and im like damn i feel so alive and like not dizzy in the brain rn and im trying to figure out why and ive got my legs propped up on this massive pillow at the end of my bed (which i was only doing cause i needed something to do with my legs that wasnt getting them wrapped in the blanket and making myself overheat) and because theyre above my head i feel so normal, like theres actually blood in my brain rn And its genuinely woah that thing everyone says makes the symptoms better is actually making my symptoms better ?????
Many women with hypermobility start doubting themselves after hearing “All your Labwork looks normal” Over time, this can lead to Self-doubt, Delayed diagnosis, or Feeling dismissed But standard medical testing is designed to detect structural damage, inflammation, or disease markers. Hypermobility often creates instability, dysregulation, and nervous system overload. These don’t always produce abnormal labs. This can look like: Pain without visible injury Fatigue without anemia Dizziness with normal cardiac testing Food reactions without classic allergies This is why many EDS patients are diagnosed years after symptoms begin. If you’ve been questioning yourself because your labs are normal You are not dramatic. You are not imagining things. You may simply have a condition that requires a different lens.
ive never actually been bleeding out but i feel like i could accurately describe it with my low blood pressure, the numbers i reach are often shouted out in bleeding out scenes on tv and that’s at full capacity with just shitty constriction of my blood vessels like one time i had a stomach bug and my bathroom was overheating and i was on the floor unable to lift my limbs or even properly expand my lungs because of weakness and everything sounded like it was underwater and my vision was fading out around the edges it was terrifying i really need to do that to a character
About the #POTS tag
What is the #POTS tag on Tumblr?
#POTS is a Tumblr tag people add to their posts so others can find related content. This page collects public posts tagged #POTS from blogs across Tumblr so you can browse them in one place.
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