#POTS chat

1 messages · Page 3 of 1

limpid hornet
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I went one block and had to stop twice.

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And it wiped me out

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Like wtf.

limpid hornet
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Diagnosis maybe tomorrow!

upper vale
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Yayyy

mellow sedgeBOT
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friendly psa whether or not u get a diagnosis that doesn’t make ur symptoms any less disabling or valid

limpid hornet
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But diagnosis can mean meds!

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Meds can mean i might be able to not feel like crap and actually do stuff.

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Not have one set of stairs knock me out for 10 mins

mellow sedgeBOT
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I wanna clarify that was not aimed at u specifically it was just a thought I had sorry!

limpid hornet
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It's ok

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And I don't mean to sound like I am Bragging or anything

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I am just excited

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This was dishes and sweeping. Both sitting down.

mellow sedgeBOT
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u don’t sound like ur bragging at all. If anything ur just sharing good news and we can all celebrate diagnosis is amazing!

wrestlingunicorn ↩️

[Reply to:](#1143691019242717308 message) And I don't mean to sound like I am Bragging or anything

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fucking hell dude

wrestlingunicorn ↩️

[(click to see attachment)](#1143691019242717308 message)

limpid hornet
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Yeah. Did not feel good

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At all

silent mesa
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Omg I just got out of the shower I had to go to the first floor cause my shower on my floor is broken

steady birch
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Does anyone else with POTS experience worse symptoms when they go from kneeling to standing instead of laying down to standing up

silent mesa
steady birch
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Like with kneeling to standing I have like really really bad pre syncope but with laying down to standing I just have mild/moderate presyncope

limpid hornet
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I'm really nervous for tomorrow for some reason

muted imp
limpid hornet
boreal sonnet
limpid hornet
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1 hour!

boreal sonnet
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AHHH exciting!

muted imp
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You got this!

limpid hornet
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So in 3 weeks the final test. But she said 90% sure

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So she just needs to do this before she can give me any meds

boreal sonnet
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Fair enough I hope u get the diagnosis so u can get treatment

limpid hornet
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She gave me conservative treatment options to do for now

muted imp
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Random question: does anyone else’s ears seem to ring more than the average person?

silent mesa
quaint narwhal
silent mesa
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I have low blood pressure

muted imp
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I don’t have blood pressure issues, so it’s probably air pressure then

silent mesa
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I don’t have issues my blood pressure is just naturally low

muted imp
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Ohh

ionic pagoda
limpid hornet
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anyone use abdominal compression? my doctor suggested it

muted imp
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I’ve had it suggested to me as well, and have also never tried it

limpid hornet
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Also I have found a site with adorable compression socks. They are not medical grade.

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Which makes me sad

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But here's my thing, I don't do long socks.

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So I was thinking like compression leggings instead

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Wait actually does 25mmhg count?

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But they areny thigh high which is what my cardiologist said. Sadness

quaint narwhal
ocean bearBOT
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GG @quaint narwhal, you just advanced to level 40!

quaint narwhal
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The place is going to help me get on income support for chronic disabilities (will have me earning $1900 ish instead of $820) I am super excited and I felt like I wanted to cry. It’s what I’ve been wanting to do and apparently this place I’m at can help me with it.

limpid hornet
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Yay!!

limpid hornet
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Omg. Compression socks are magic. Just sitting down. Not even the thigh high ones just cheap ones from Meijer to try them out

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I already feel better sitting down

winged moat
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Thats amazing!! I have been scared to spend money on them because i have always hated socks and anything thats thight around my legs but everyone is so positive aboit them!

mellow sedgeBOT
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Yessss

wrestlingunicorn ↩️

[Reply to:](#1143691019242717308 message) Omg. Compression socks are magic. Just sitting down. Not even the thigh high ones just cheap ones fr…

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So are we. We get bad marks from like socks above the ankle but not with these compression socks by Copper88

mira ↩️

[Reply to:](#1143691019242717308 message) Thats amazing!! I have been scared to spend money on them because i have always hated socks and anyt…

limpid hornet
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Whether I would like them or not

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I am not buying more heavy thigh high stuff now that I know I like it.

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But they are footless

mellow sedgeBOT
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It feels weird at first I’ll admit but after a while it goes away and you don’t think about it.

winged moat
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Hm well i might try the footless ones

half horizon
# limpid hornet anyone use abdominal compression? my doctor suggested it

I used to but every piece of abdominal compression gear that was just for the abdomen would get these awful wrinkles/folds that you can’t undo without it slipping back into it after a couple seconds of wear. So the first few days to a couple weeks went good especially for my POTS and even my sensory needs but after that it was a sensory nightmare. It also worsened my acid reflux. I recommend compression tights/leggings that go up past your belly button, I’ve never had the wrinkles problem with those although they’re a little more of a pain to put on but they achieve good abdominal and leg compression. Sometimes I wear compression socks on top of that for really bad flare ups. I’ve also heard of some people getting medical corsetry which would also solve the wrinkle problem but I’ve never tried it.

peak sierra
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I think I might have POTS! Just a mild case I think

limpid hornet
half horizon
limpid hornet
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I'm upset today because I can't do stuff I want to. I want to go to the haunted house and corn maze, etc. But I can barely make it through a grocery store.

plain steppe
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i fainted today at college =/

limpid hornet
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You feeling ok now?

limpid hornet
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I'm not feeling good. really lightheaded

plain steppe
limpid hornet
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its ok

silent mesa
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My tummy hurts 😢

limpid hornet
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I did a lot yesterday and I am paying the price. My chest hurts, I can't get a deep enough breathe and I can't sit up without getting dizzy

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I'm really scared of the not being able to get enough air. I know logically I am fine but it doesn't feel like it. And it's making my chest hurt more.

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Anybody found anything effective for that. And maybe the chest pain also?

peak sierra
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I am heavily suspecting POTs

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But I’m unsure if I have POTs or orthostatic hypotension

steady birch
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I see a lot of people talk about Orthostatic Hypotension on TT but why is nobody talking about POTS + Orthostatic HYPERtension?

steady birch
mellow sedgeBOT
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Idk. Good point though

peak sierra
peak sierra
limpid hornet
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So I have learned when to lay down. I was too late this time. I still passed out. But it wasn't bad. I just felt out of it and weird when I woke up

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And I was already laying down

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Muffin was licking my face.

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I think I am just stressing her out. Lol

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Cause it hasn't been below 120 for at least an hour

oblique wing
bleak niche
oblique wing
bleak niche
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😭

mellow sedgeBOT
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POTS has kicked our ass this last month with everything that we were doing. we've had multiple POTS episodes per day and for us they can trigger our seizures as well so we had a lot of seizures too. physical activity and heat are our biggest POTS triggers and we did so much from Aug 20-Sept 22. we're crashing hard now

limpid hornet
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yeah, physical activity is a huge trigger for me too

rustic kestrel
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On that topic, has anyone found any exercises that are good for not triggering their symptoms?

ocean bearBOT
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GG @rustic kestrel, you just advanced to level 8!

granite junco
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ive sort of had pots as an issue i may have in the back of my mind, but the other day i had this really odd experience so now im sort of thinking i could have it?
i suddenly got like really weak shaky legs and my hands were shaking, i felt really feverish, and all together odd.
my mum is diabetic and she has similar when she gets low blood so i had some sweets and it didnt help
then i sat on a sofa downstairs and started feeling worse until i fell backwards and had dizziness/vertigo for a second and felt soooo awful
i managed to steady myself and someone got me a glass of water that i chugged and i had a snack
felt a bit better after that just shaken up and anxious so i managed to go on a short dog walk and felt fine after

does this sound at all like pots? sorry if its unreadable im so tired with a dislocated shoulder and brainfog rn

oblique wing
oblique wing
granite junco
oblique wing
half stratus
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Eeeee I ordered a plushie to help comfort me with my pots flare ups! It’s a pots awareness plushie!!!

IMG_6396.png
silent mesa
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Scared cause I have to do a colon emptying and my pots is in a flare up too

hoary reef
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I think I might have pots and I wanted to talk to people who have pots to see if I do

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Sometimes I get up and my body immediately becomes weak, my vision starts to go black and gets all blurry, and I often faint right after

ocean bearBOT
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GG @hoary reef, you just advanced to level 1!

hoary reef
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I'm often fatigued like I could fall any moment

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I get short of breath too and my legs get really wobbly

mellow sedgeBOT
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Definitely get it checked out by a doctor if you can

Its 1:18am ↩️

[Reply to:](#1143691019242717308 message) Sometimes I get up and my body immediately becomes weak, my vision starts to go black and gets all b…

peak sierra
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Could I still have POTs even if I don’t faint? I feel like I’m gonna pass out, but I never do 🤷‍♀️

eternal pulsar
peak sierra
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Thank you

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:))

velvet vortex
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Hey all how do I reach out to my GP and ask if I can get tested for POTS and how does it work?

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I've been feeling horrible for some time, again when standing up I start feeling super weird and not the type that you get a bit lightheaded from standing up too quickly that goes away in a few seconds but the one that lingered around had me to crouch on the floor feel like feeling and what not left my body like things are not real and sit it out, sit back down and just stand up a moment later. I remember having had a time with really low blood pressure and feeling really bad and the GP could do nothing about it. I've had the feeling like passing out and everything leaves my body when standing up for a while now at times of bad fatigue it gets worse. I also years ago suddenly had like a really weird heartrate when doing sports when I would start doing exercising my heartrate would jump far above 200 I cannot remember exactly how bad it was but it sure was something that is not normal for me as I used to have a sporty heartrate. Also could not being able to warm up your own body or cool it down be related? anyways I have lots of symptoms that I do not know what the right thing to do is I tried resting lots in bed now I feel like I might have made them worse? I seem to relate to a lot of pots symptoms I know lots of conditions overlap but I think it's worth it for me to test it and maybe have it or eliminate that I don't have that and try finding out what else could be causing me to feel this bad.

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also when I had a personal trainer and exercised once a week that is the year I felt the best I have in ages and ever since I been just struggling

mellow sedgeBOT
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I went in and described my general symptoms, and they did some ||blood tests|| to rule out low iron etc. they then did an ECG and made me monitor my blood pressure during episodes. Now waiting on a cardiology appointment and a 24 hour ecg

Soonshoone (Pls Ping) ↩️

[Reply to:](#1143691019242717308 message) Hey all how do I reach out to my GP and ask if I can get tested for POTS and how does it work?

velvet vortex
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hmmm I see

limpid hornet
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I feel horrible. I am exhausted and dizzy and just want to sleep and lay down. I can't think

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But guess who has another 2 hours of work

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I will make it

limpid hornet
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I can't even sit up without symptoms at the moment

mellow sedgeBOT
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we've got that bun too, and like 10 others lol. and we still have about 10 that we want to buy over time.

ScootLeScoot (Ping me!) ↩️

[Reply to:](#1143691019242717308 message) Eeeee I ordered a plushie to help comfort me with my pots flare ups! It’s a pots awareness plushie!!… 📎

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the majority of people with POTS only experience presyncope (feeling like you're going to pass out) rather than syncope (passing out)

Duck Lord (pls @ reply) {📜} ↩️

[Reply to:](#1143691019242717308 message) Could I still have POTs even if I don’t faint? I feel like I’m gonna pass out, but I never do 🤷‍♀️

peak sierra
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Thank you

mellow sedgeBOT
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What does presyncope feel like?

Lennox [🌑] [💫] ↩️

[Reply to:](#1143691019242717308 message) the majority of people with POTS only experience presyncope (feeling like you're going to pass out) … 📎

limpid hornet
half stratus
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Does anyone else experience like bone pain with pots? I’ve been having like ||Stabby|| and throbbing pains in my bones ans it’s really hurting

limpid hornet
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I get joint pain but I don't know if thats related because I also have chronic pain syndrome

half stratus
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Mine specifically feels like it’s the bone

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Like it’s in my hands spine wrist legs feet knees

winged moat
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Yea i also have a lot of pain, but i have me/cvs as well so its hard to say where symptoms come from

limpid hornet
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So I have the tight test tomorrow

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Tilt

limpid hornet
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I officially have pots!

muted imp
limpid hornet
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I feels good and bad

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Cause they said there not much except symptom management

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But I am not crazy!

mellow sedgeBOT
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congrats on the diagnosis!!!

rustic kestrel
limpid hornet
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I got on meds!

silent mesa
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My pots is so bad right now

leaden lynx
limpid hornet
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I am excited to get on meds

leaden lynx
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Good luck

eternal pulsar
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(/gen btw)

rustic kestrel
limpid hornet
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Spelling is hard

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The one that starts with p

rustic kestrel
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the brand name or the meds name? 😅

limpid hornet
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propranolol

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There that's the spelling

rustic kestrel
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Ooo I had that before, iirc there's a few different dosages, I hope it helps you!

muted imp
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I’m also on propranolol, it’s a low dose and I don’t have blood pressure issues, so it works well for me in terms of tachycardia.

limpid hornet
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Same. I don't have blood pressure issues

jagged fern
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Been having awful chest pain, dizziness. Had an emergency ECG that showed nothing apart from a high heart rate - does anyone know if POTS shows up on an ECG?

muted imp
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@jagged fern It depends, if you are having a tilt table test, that is the number one test to diagnose POTS and they do an ECG while doing the test. Some providers may do a ECG/EKG heart monitor that can be worn anywhere from 24 hours to a few weeks to see what your heart rate is doing while symptomatic. (Note: EKG is the same thing as an ECG, I don’t know why we still say EKG in America because they will say “electrocardiogram” and “EKG” even though EKG is German).

rustic kestrel
quaint narwhal
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(Tw ||emetophobia||)
Love the feeling of ||nausea|| around ||food||

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Been getting progressively worse

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Think I should go to my doctor sooner than him calling for an appointment for CT test results. It should be coming up soon but I’m unsure. Dizziness, headaches and ||nausea|| are really heavy lately, so sooner may be better.

limpid hornet
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𝕀 𝕥𝕒𝕜𝕖 𝕫𝕠𝕗𝕣𝕒𝕟 𝕗𝕠𝕣 ℕ𝕒𝕤𝕖𝕒𝕦𝕒

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𝕆𝕙 𝕘𝕠𝕕 𝕤𝕡𝕖𝕝𝕝𝕚𝕟𝕘

quaint narwhal
limpid hornet
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𝕐𝕠𝕦 𝕔𝕒𝕟 𝕘𝕖𝕥 𝕚𝕥 𝕠𝕧𝕖𝕣 𝕥𝕙𝕖 𝕔𝕠𝕦𝕟𝕥𝕖𝕣 𝕥𝕠𝕠 𝕚 𝕥𝕙𝕚𝕟𝕜

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𝕐𝕠𝕦 𝕔𝕠𝕦𝕝𝕕 𝕥𝕣𝕪

quaint narwhal
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Oh ok, I’ll look then
Thank you for the suggestion. 😊

limpid hornet
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Yep

mellow sedgeBOT
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It's like a head rush from getting up too fast only our heart and head both pound, pins and needles in hands and feet, vision goes either all black or all white or blurry, aching pain in/behind eyes, have to breathe hard, start getting a little sweaty, chest feels tight, have to grab onto something or else we fall to our knees

Ember - they/pup ||BIRDS ↩️

[Reply to:](#1143691019242717308 message) What does presyncope feel like? 📎

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That's just us though

mellow sedgeBOT
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Forgot to mention the stomach cramps and nausea if it's a longer episodr

bleak niche
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!warn @limpid hornet please only use the English alphabet and no other special characters

ocean bearBOT
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wrestlingunicorn has been warned

Reason: please only use the English alphabet and no other special characters

limpid hornet
bleak niche
limpid hornet
limpid hornet
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So I definitely did too much today.

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But worth it

modern quail
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I decided to put up posters at my school yesterday which meant going in the stair wells instead of the elevator for about 4 different staircases and now I can barely walk 😭😭 it was worth it tho

mellow sedgeBOT
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we wayyyy overdid it for a few days in a row due to late notice deep clean inspection in our apartment so the last couple days i've been fronting and taking it easy.

also, having the Visible app/Polar armband really does help with managing POTS. it was actually Zara's sponsored ad that finally convinced us to buy it

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oh man yeah that's a lot. hope you were able to take it easy afterward

ghost ↩️

[Reply to:](#1143691019242717308 message) I decided to put up posters at my school yesterday which meant going in the stair wells instead of t…

limpid hornet
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I have the visible app

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Not the armband

quaint narwhal
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Getting the visible app now. I’m glad there is an app for it finally.

limpid hornet
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I ignored it today. It says take it easy. Proceeds to walk 3 miles

quaint narwhal
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Pffft pretty much

limpid hornet
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I definitely feel the consequences. My chest hurts.

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And I can barely stand

limpid hornet
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I passed out at work. In the bathroom not for long. But still I just want to go home

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I still don't look great apparently. Someone mentioned I looked pale.

junior creek
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aaaAAhh im in such a bad flare up just feeling like im abt to pass out all day (never really pass out) and vision is blurry+stars and everything sounds distant and vague and i dont know how to do this

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also still need to keep up with school work but i just crash everyday after school, then do homework and crash again

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btw, maybe its a taboo topic for some (or maybe triggering??? idk just ping me if i need to change anything) but im really wondering if flare ups can delay your period? im like 3 weeks late

limpid hornet
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Guess who hasn't got up all day. Palpitations, chest pain, shortness of breathe. My roommate was ready to call an ambulance. I didn't want that

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Tho the one time they did. I got some oxygen and it helped a lot.

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I messaged my doctor because it's been like this a couple days

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She said it's normal for this.

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Just push through it.

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Basically said this is just a flare up. It might get better or it might not. But you will learn to manage either way.

quaint narwhal
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If you question dysautonomia, check your iodine levels and thyroid issues, apparently quite a bit of people with Orthostatic Hypotension also have Hypothyroidism.

limpid hornet
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That was all checked before. It was normal

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Sadly

quaint narwhal
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Good good.

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Just found out I have low iodine levels

fringe grove
limpid hornet
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Anyone else find driving to be hard because of brain fog

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I had a cold a couple days ago. It kicked my butt. I still feel really bad from it.

polar scarab
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i just found out that there's a high possibility I have POTS, so... 😅 yeah any advice would be welcome

mellow sedgeBOT
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lots of salt. Salt is ur best friend now also lots of water and compression socks

Indi_go 🔔 ↩️

[Reply to:](#1143691019242717308 message) i just found out that there's a high possibility I have POTS, so... 😅 yeah any advice would be welc…

quaint narwhal
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But yeah high sodium foods and drinks will benefit you

polar scarab
quaint narwhal
oblique wing
# polar scarab <@475911601174740994> tyty both- imma have to look into some of them and I'll be...

pots can be symptoms of a lot of things so go to a dr if you can. compression socks are great for everyone but i would hold off on salt till your officially dx bc some health conditions do worse with salt as it raises your blood pressure. i’d definitely talk to a dr and get the necessary tests before doing anything to treat. compression socks and increasing water and gentle exercise are great options while you wait but increasing your salt when you don’t know if it’s pots could do more harm than good

polar scarab
# oblique wing pots can be symptoms of a lot of things so go to a dr if you can. compression so...

yeah absolutely. I'm in nursing school, but it didn't even click until my mom brought it up and was like "hey, it looks like POTS might be what's happening here" (lots of unexplained issues) and I pulled out my notes on the diagnostic criteria/clinical symptoms. I was reading thru like "yes, yes, yes, yes, yes" like how did I not notice that in class???😭

I will absolutely be checking with my doctor first tho, just wanted to see here also.

oblique wing
polar scarab
limpid hornet
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Ahh!!!!!

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Stupid body. I just stood up and tried to walk. I got really lightheaded and my vision went out. So I just got to the ground as fast as possible.

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I managed to not pass out

limpid hornet
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Still. From yesterday

gray horizon
limpid hornet
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Compression stuff is magic. I know it doesn't sound like improvement but a heart rate of 140 actually is an improvement for me.

steady birch
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Does anyone experience swelling fingers as a POTS symptom 😭

limpid hornet
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I don't know if it's a symptom for sure but I also have that happen

limpid hornet
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Anyone have a solution for compression binders riding uo

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Up

limpid hornet
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I got a rollator

upper vale
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Yayyyy

limpid hornet
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It helps Soo much

jade flame
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Hello, if anyone can help, I am in need of some advice. I have pots and have been experiencing extreme nausea and circulation crashes after eating for almost a month now. As long as I haven’t eaten yet, I feel fine, but as soon as I do (and it doesn’t matter what food or the amount) I feel extremely nauseous and it usually takes several hours until I feel better. (I am not pregnant, I made sure.)
Does anyone have any experience with this kind of symptom? Very bland meals help sometimes, but even then I get very nauseous.
A couple days ago it was so bad I almost had my partner call an ambulance, because I was feeling faint and nauseated for hours and nothing helped.
I have a doctor’s appointment next week for some tests, but until then I don’t really know what to do. Any advice I could find online hasn’t been helpful.

sturdy goblet
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Yes I experience that too. My nausea has gotten very bad lately my appetite has been really bad as a result (although that could be unrelated to POTS so I’m not sure exactly what is causing that.) I know you’ve probably heard this advice before but eating smaller meals, more often rather than larger meals less often. Also meals high in carbohydrates and sugar can sometimes make symptoms worse. I don’t have much advice on the nausea though because I also don’t have anything that helps

limpid hornet
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I sometimes go days without eating anything but crackers.

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Because it's all I can handle without throwing up

clever remnant
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Hi! Just wondering, I have been fainting like 3-15 times a day and I keep falling from standing (I cant tell when I am about to fall until I lose motor control), hitting my head and getting a lots of concussion symptoms all the time. Every time I mention it to my doctors, they just tell me 'concussions are bad' and don't offer solutions. How do you guys not hit your head every time you fall or make the fall less bad?

limpid hornet
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Service dog. Or maybe a heart rate monitor that alarms you so you can sit down

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I sit down when I get dizzy or lay down so when I faint I don't fall. Also rollator so I immediately have a place to sit.

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If your heart rate aligns with fainting maybe an alarm could go off so you could sit even before anything happens

limpid hornet
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I just had a very convenient adrenaline dump
I made myself breakfast with it. I was incredibly Shakey the whole time but I used it.

jade flame
jade flame
oblique wing
oblique wing
limpid hornet
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Sorry. It was an easy transition because I already had one.

crisp cypress
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has anyone taken outdoor lab courses in university? i have a meeting with an advisor tomorrow to talk about accomodations and i'm not sure what to ask for

clever remnant
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thanks guys!!

limpid hornet
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I wonder if those settings could be changed

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Is it an apple watch or Fitbit or something else

clever remnant
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yeah I have tried but surely there is a way!! Garmin

ocean bearBOT
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GG @clever remnant, you just advanced to level 1!

limpid hornet
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Oh it worked

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Look in pics and videos

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Because it lets me put a link there

clever remnant
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thank you

limpid hornet
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Yep

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I walked to my car. 20ft away

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150

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Wtf

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I can't even walk short distances recently

clever remnant
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Thats so frustrating!!

rocky latchBOT
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do u want some advice? /genq

clever remnant
rocky latchBOT
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yeah i'm asking wrestling unicorn

Abbie H ↩️

[Reply to:](#1143691019242717308 message) Sorry - I cant tell who you are asking - if its me or Wrestlingunicorn. If its me then yes please bu…

limpid hornet
rocky latchBOT
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eat a buttload of salt

wrestlingunicorn ↩️

[Reply to:](#1143691019242717308 message) Yes please

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have salt packets on standby all the time

limpid hornet
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Just whenever feeling weak eat salt. Lol

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Where would I buy salt packets

rocky latchBOT
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dont buy them just go to a cafe and pick up a buttload of them don’t pay for salt packets

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eat salt drink water

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Also compression socks

limpid hornet
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I have compression socks but it's hard sensory wise. So I don't wear them all the time

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What fabrics do people like that isn't gross sensory wise

limpid hornet
#

My cardiologist said the soonest she can see me is November

clever remnant
#

honestly I havenet found any that are sensory friendly. I find salt tablets better (because they taste slightly less disgusting) they are normally at the pharmacy near the hydrolite

#

also any leg / calf excersize (calves help pump blood back around so any extra strength is good) - because I am generally pretty weak - all I do is before bed while laying down I raise each leg 5 times. It actually helps quite a bit.

polar scarab
ocean bearBOT
#

GG @polar scarab, you just advanced to level 3!

oblique wing
#

dr scholls compression socks. they’re mainly nylon and spandex kind of like an athletic material and have a ultra smooth toe seam

oblique wing
limpid hornet
#

Oops. I misunderstood

#

It's January. And I know it's not that long but I can barely walk anywhere without needing to sit. And I can't be upright for more than 10 minutes otherwise I pass out. So I need a chair or something always.

clever remnant
#

Thats aweful - it must be so frustrating! I saw you are from North America - and I dont know if this will apply where you are (because I have heard the medical system is pretty terrible) but normally, in Australia (or at least in my experience) if you could literally sustain severe injuries (such as fainting) from waiting any longer to see a medical professional you can generally call them and they will normally let you see them quickly. Have you tried calling them and explaining your situation?

limpid hornet
#

No. That's a good idea

#

I have begged and told them I can't function normally. They were like well you're fine bow

#

Now

#

I literally ended up in the ER because I fainted and fell down stairs

hot kelp
#

That really sucks

limpid hornet
#

I just don't feel like I am getting listened to

rustic kestrel
limpid hornet
#

Not sure yet. It was recently

#

I was fine

#

They just wanted to make sure I didn't have a concussion

limpid hornet
#

I am really struggling at work

#

I got dizzy and then tried to stand. Ended up falling

limpid hornet
#

I am sending a message to my primary care with everything.

clever remnant
#

good luck!!

limpid hornet
#

Yeah. I can't function like this

#

So let's hope they help. I'm scared because last time they said maybe wheelchair and I said no. But I don't know that I can anymore

warped anvil
#

Hey, should I get my symptoms checked out?

#

I get really dizzy when I stand up, briefly for like 10 seconds and I have noticed my HR goes up by like 30 + I have other illnesses connecting to POTS.

#

Idk what other ppl experience

limpid hornet
#

It can't hurt to get it checked

#

I would say yes

polar scarab
#

soo yesterday my heart rate was literally going all over the place, from 90bpm to 150 and everywhere in between. I felt dizzy and disconnected, like my heart was pounding. I had to stay home from classes bc even when I was laying on the floor, my hr was all over the place. is this a POTS thing or should I call my doctor..?

warped anvil
#

That doesn't sound like POTS at all and I'm not a doctor, but I'd probably look at an arythmia or other causes.

polar scarab
warped anvil
#

Is it still going on?

polar scarab
warped anvil
#

I'd still call your doctor and ask for an ECG ngl.

#

Sounds sus.

polar scarab
#

welp, thx for telling me

warped anvil
#

Np

polar scarab
#

i'll do that

warped anvil
#

Lmk how it goes

clever remnant
polar scarab
#

i can probably js look it up- don't want to force that on you lol

clever remnant
#

From what i know its a common heart rythm that makes the heart go abnormally fast - normally 150 or above =.

polar scarab
#

huh

#

I will bring that up too 👍🏼

limpid hornet
#

I need to go to the store and get anti itch cream because my skin hates me but i got super lightheaded to the point i lost my vision and hearing and got really close to passing out from walking up and downstairs to get shoes

#

So I don't think so

rustic kestrel
# polar scarab soo yesterday my heart rate was literally going all over the place, from 90bpm t...

I recommend looking into IST - it's what I have with similar symptoms to what you're describing. It's pretty similar to POTS but not dependant on positioning. Testing will be ruling out other conditions that can cause tachycardia with blood tests, and then also ECGs, standard and 24 hour+ most likely and an echocardiogram. You can get medication for it if diagnosed. Have a google and see if it feels like what you're experiencing :)

polar scarab
rustic kestrel
#

Yeah no absolutely definitely tell them everything you're experiencing. From my experience going in with a bit of knowledge of potential conditions normally leads to better results - some doctors can be quite dismissive and act like they know your body better than you do, so I think you're doing the right thing by trying to get an idea of what could potentially be going on for you. A symptom diary will help a lot as well, doesn't have to be too formal, just a note of when you experience certain symptoms, any identified timings or triggers etc. can be really helpful for guiding doctors to a diagnosis. It's really easy to forget when you get asked on the spot I think 😅

oblique wing
polar scarab
oblique wing
polar scarab
oblique wing
polar scarab
oblique wing
rustic kestrel
polar scarab
polar scarab
rustic kestrel
#

On the note of your other symptoms not fitting with pots, I think unfortunately these conditions don't often come alone, there's lots of common comorbidities

polar scarab
#

noo

#

that makes sense, but i don't like it :/

rustic kestrel
#

It is really a shame and it's far from easy. Fortunately there's communities out there like this where we can all support each other :)

polar scarab
oblique wing
#

guava is a really good app tho. and i definitely recommend it for symthom tracking which will probably help with getting dx. and it reminds me to take my meds and vitals which is nice

light stone
#

Yes, my feet will do numb or feel like they’re on fire like they’re asleep without pins and needles

velvet vortex
#

anyone got recommendations on a smartwatch or armband heart rate monitor and what you prefer and is more accurate and if you can wear an armband monitor all the time/most of the time. I'm trying to research and I'm a bit overwhelmed. I'm trying to gather information to get diagnosed with POTS cuz I do have lots of symptoms. I personally would prefer a heart rate monitor over a smart watch because I do not need anything else apart from the heart rate monitoring.

#

i can't really find what armbands are best as everything is so focussed on sports and i guess not medical reasons

bleak niche
plain steppe
#

guys i finally found a food that helps w my POTS and its salted butter and it has helped so much for me and i used to have unsalted butter but it was making it worse and then it just thought that it was a flare up and i didnt know what it was until my mum randomly changed to salted butter and it has helped bloody wonders it has

clever remnant
ocean bearBOT
#

GG @clever remnant, you just advanced to level 3!

fossil musk
limpid hornet
#

I am laying down and I can't get my heart rate under 120

#

Should I be concerned

#

I feel horrendous and am not getting out of bed today

hot kelp
warm jay
#

Hi, I'm trying to figure out what's happening with me and I was wondering if I could have some help?

  • whenever/most times I get up from the couch my vision goes out for a few seconds and I get really dizzy
  • my legs fall asleep pretty quickly after I sit down somewhere sometimes
  • I can't really stand for a long time without needing to lean on something or lock my knees or one of my knees
    That's all I can think of right now and some of these things that are happening seem like either iron deficiency or POTS from what I've seen?
oblique wing
warped anvil
warm jay
#

I'll talk to my parents about maybe going to the doctor (cardiologist maybe?) since also some of my other family members also have similar symptoms

limpid hornet
#

Anyone else ever get where you can like hear your heart rate in your head

clever remnant
#

omg yes

oblique wing
limpid hornet
#

It does that when I my heart is racing

quaint narwhal
#

When you hear and feel your heart beating that’s heart palpitations.

#

Associated with high heart rate.

limpid hornet
#

I didn't know there was a name

#

Thank you

quaint narwhal
#

Yep!

#

No problem

limpid hornet
#

I am too nauseous to eat

#

I have been all day

plain steppe
#

i hate heart palpitation ive been having them all morningg!!!

limpid hornet
#

this is random, but what are peoples most and least managable symptom

clever remnant
#

Most = numbness (annoying and strange but overall does not impact my life all that much)
Least = all the random injuries and concussions I get from fainting / falling from balance issues

crisp cypress
#

Most: numbness and weakness, as it hurts really bad for me and is just annoying overall as i have to rely on a mobility aid to do most things. fatigue is also really frustrating as i can't do as much i used to

Least: probably heart palpitations, as i've had them as long as i can remember so i'm used to it at this point

limpid hornet
#

Question for people. What do they do if they are just too nauseous. I had to stand for like 10. Mins. Got close to passing out but was too nauseous for even my electrolyte drink. Just putting anything in my stomach made me want to throw up.

clever remnant
#

Honestly I just take metaclopramide and hope!! If I can stomache stuff then Ginger lollies, Pepermint tea and weirdly super sour lollies.

#

Does anyone else with pots get this weird feeling - its not dizziness or vertigo (when they flareup it feels different). It kind of comes on all at once and only goes away after laying with my feet up for a few hours. My legs get painful, numb and tingly and everything just feels wrong and tingly and more dizzy. It is absolutely horrific and I can never figure out if it has a name!! does anyone else experience this weird feeling?

limpid hornet
#

Like blood pooling in your legs?

clever remnant
#

maybe! Idk because it doesn't happen every time I feel dizzy or faint!

limpid hornet
#

So just based on google

#

It says you don't always feel faint when blood pools in your legs

#

That's Google don't doesn't mean much but maybe that's it?

#

Worth looking into maybe?

quaint narwhal
#

Presyncope is a spectrum

#

You can have good days where you get other symptoms and not lose vision or muscles or feel super dizzy.

#

Thanks to compression I rarely experience the presyncope symptoms unless I climb stairs. But leg and arm and just general body weakness, num tingling in the legs after standing long, squatting or bending over, or if the limb is in a certain position too long.

clever remnant
#

Ok thanks!

#

That definately makes sense!

hot kelp
#

I'm seriously considering POTS again atp and I'm so ready to cry if it actually is /nav

limpid hornet
#

I hope you get answers either way

hot kelp
#

Oh shit you exist-

limpid hornet
#

What?

hot kelp
#

Nothing ^^

limpid hornet
#

Did i say something wrong

true ibex
#

My doctor seems to think I have POTS and gave me advice for what might help my symptoms, but I don’t think she actually diagnosed me? It’s kind of confusing. I’ve been referred for a 24 hour ecg aswell, does anyone know if this is used to diagnose pots? Or is it just to check for other stuff?

oblique wing
hot kelp
limpid hornet
steady birch
#

Most: Presyncope, Raynaud's, orthostatic headaches

Least: joint and tendon subluxations, palpitations, fatigue, vascular pain, migraines and seizures

ocean bearBOT
#

GG @steady birch, you just advanced to level 6!

limpid hornet
#

I hate waking up from passing out because I don't remember anything for a second and everything feels really heavy and just no. It's horrible. There's a moment of panic. Like how long has it been after you realize where you are again.

steady birch
limpid hornet
#

Like it's hard to move them. I get like sorta awake where I am aware of my surroundings then I can kinda move then finally I can actually open my eyes and realize wtf happened

steady birch
#

Exactly 💯

#

They feel heavy and while I'm getting my memory back, I'm just there wondering what tf just happened

limpid hornet
#

I just feel so out of control and I hate it. Cause I can't sit up for a little bit after. I just need to wait a second.

#

Well more like 5-10 mins

steady birch
#

It's even worse when it in public bc it feels like everyone's looking at you like what's up with this guy 😭

limpid hornet
#

Yes! And people are like can I call 911! And I am thinking. Go TF away. Just give me a minute

clever remnant
#

yes omg the seccond after fainting when everyone is freaking out and instead of dealing with how terrible I feel I end up having to calm everyone around me!!

limpid hornet
#

Yep

quaint narwhal
#

It’s funnn /sarc

steady birch
quaint narwhal
limpid hornet
#

How do people get chores done

willow willow
#

Currently I use a lot of stools and my wheelchair but it's mainly just using way to many spoons and crashing after. If anyone has any actually good tips please share

limpid hornet
#

I need a wheelchair but fighting it. So I currently just use a stool around the house. And don't leave my house unless nessesary

#

But I do need something. If I don't have something I will fall

rocky latchBOT
#

We started with a walking stick to help with falling/tripping/balance (and to not deal with comments of going for something more). Crutches would have been better looking back because we have bad grip so we drop it a lot. The cheap amazon wheelchair has been amazing for long or bad days

limpid hornet
#

I use a cane now.

#

It's hard because sometimes it feels like I never have any days I can be super productive. And when I do feel ok I am scared of making everything else worse. So I don't push it

#

It's like I feel ok today. But I don't want to push it so I can't walk tomorrow

rocky latchBOT
#

That is such a mood! I alternate not doing anything and just worrying I am deconditioning and then getting stuck in a boom and bust cycle. It feels like there is no good middle ground sometimes

limpid hornet
#

I think if I had a wheelchair I wouldn't worry so much about that. Because if I can't walk I can't get around currently. But if I had some way to get around without it. I would be less scared of that outcome.

ocean plume
#

I really want a wheelchair by my parents don’t want me to have one sadly, it would certainly help with life but they refuse

limpid hornet
#

It's my own brain not wanting one. Not others.

clever remnant
#

I haven't talked to anyone about getting a wheelchair. I am well enough to walk a few meters (with a cane) but I faint more than 5 times a day and every time just stubbornly keep walking. Its at the point where I am getting quite bad injuries often. I dont want a wheelchair because thats a scary next step. But I feel like my life is not sustainable right now.

limpid hornet
#

I know when I am going to faint so I can stop and lay down or even just sit and put my head in my lap.

#

So I don't get hurt or other people don't bother me

clever remnant
#

Thats good at least. But i guess having less visible falls comes with its own issues socially. Because I have presyncope whenever I stand its hard to tell when I am about to actually fall. By the time i am about to faint, my body is too weak to sit or do any controlled movement like letting the people around me know.

limpid hornet
#

Oh. My dog tells me

clever remnant
#

thats so good!! Do you have a service dog?

limpid hornet
#

And I have levels of presycope. There's dizzy, which is not a risk. Annoying but pretty much anytime I stand. So I just ignore it at this point. But when my vision starts to go out. Get on the ground now.

#

Yep

#

She's my baby

#

I love her

clever remnant
#

that makes sense! Thats so good!! I have been strongly reccomended by a few doctors to consider a service dog. What was the process like to get one for you?

ocean bearBOT
#

GG @clever remnant, you just advanced to level 6!

limpid hornet
#

I used to train them as a job. Used to have a business doing it

#

I had to stop. I can't anymore. But I trained my own.

clever remnant
#

thats so cool that you can do that! But that sucks you cant anymore.

limpid hornet
#

It was too much standing and walking. I couldn't do it

clever remnant
#

fair enough

limpid hornet
#

It makes me sad.

#

I really enjoyed doing it

clever remnant
#

yeah! It sounded like an awesome job!

#

I used to sing classical opera a lot before I got sick. I was planning on studying music. But i switched to law instead and luckily, I can keep singing in two choirs because my absolutely incredible friends can catch me every time I fall from my chair when I sing. But I understand in a smaller way how much it sucks to lose something you love.

limpid hornet
#

Can they let you sit instead

#

So if you fall it's not dangerous

#

That's what I do a lot

clever remnant
#

I do sit while I sing. But because its so physically taxing, I still faint a lot. And when I fall, if my head is in a bad spot I ||stop breathing|| or tumbles from the chair. Which is not good.

limpid hornet
#

At work I sit 99% of the time. It helps. I have only fainted a couple times there and I just put my head in my lap. I got dinged for not being aware but as long as I can hide it I don't care.

#

I would rather be dinged for being lazy a couple times than anyone know

clever remnant
#

yeah thats good - yep I'm the same its too awkward!!

limpid hornet
#

I would definitely get fired over it

#

My boss doesn't even like that I use a cane

clever remnant
#

thats SO BAD!! Omg I can't imagine how stressful that would be - having to hide fainting!

limpid hornet
#

It's possible. Just scary because I have to make sure I get in a position where it won't be noticeable. Sitting in a chair with my head in my arms seems to work.

#

The thing I am also scared of I don't want it to assumed I fell asleep because I don't answer. That would get me fired.

#

I can not look up as long as I respond. I can't fall asleep

#

And it could totally look like that.

clever remnant
#

That sucks. I’m sorry you have to go through all that every day!!

quaint narwhal
#

We recently got elbow crutches! And they are awesome, definitely hell on the shoulders but great otherwise.

clever remnant
#

thats so good!

#

Has it been helping?

quaint narwhal
#

Yes, surprisingly. Helps with balance for the most part. Still getting used to it. It makes me feel more free.

#

Accidentally fell down narrow steps at a rental house viewing when i first got them though.

#

I felt so crappy about it. Didn’t hurt myself but was really embarrassed.

limpid hornet
#

That's ok

#

Learning curves exist

quaint narwhal
#

Yeah

lofty sphinx
#

hey potsies!!!

#

me too sigh

limpid hornet
#

Hello

#

What have you done today

limpid hornet
#

I am kinda floating around in and out of consciousness sometimes. It's not fun. I need to lay down or put my head down because I don't have full motor control and I can't always answer. I just need water And salt and time. And eventually I come out. But wtf. I hate it

clever remnant
#

Omg I get that too! It’s the absolute worst!

rocky latchBOT
#

blooding pooling is so annyoying!

quaint narwhal
willow willow
#

Agreed, sometimes I would like to just cut the blood flow to my legs off so the rest of me could have some

crisp cypress
#

does anyone have good heart monitor options? (like polar bands, fitbit, etc.)

polar scarab
#

I tried to post a link but it wouldn't let me

lofty sphinx
#

does anyone else get really bad symptoms when theyre sick? like if youre sick your autonomic nervous system gets really bad and you get super weak and your legs go completely numb?

limpid hornet
#

Yes. Definitely.

clever remnant
#

Yep

quaint narwhal
#

It suckssss

#

Just got out of a shower an hour and 20 minutes ago. I feel extremely drained 💀😪 wish I had more energy but today nope.

limpid hornet
#

Yup. I have to shower and do laundry in a 3 floor house

#

today

#

I am going to feel it tomorrow which sucks because I am just coming out of a i cant get out of bed flare up

#

so I would like to keep feeling ok

rocky latchBOT
#

apparently today my pots has decided that my heart rate won’t be below the high 90’s I’m not even walking idk why it’s so high

#

This was literally just me sitting not moving

IMG_8569.jpg
limpid hornet
#

Bodies are stupid

quaint narwhal
#

High hr compensating for BP irregularities

indigo portal
#

i see a cardiologist in january! Im so happy. Other then my smart watch records, and symptoms, what would you reccomend i think about taking? I'm already worried that my anxiety will mask the hr changes too much

ocean bearBOT
#

GG @indigo portal, you just advanced to level 1!

polar scarab
polar scarab
clever remnant
#

Good luck!!

clever remnant
limpid hornet
#

I feel like i was hot by a truck then forced to stay awake for 72 hours. Even tho I was asleep all day

indigo portal
indigo portal
polar scarab
indigo portal
#

awesome (sarcastic bc i have hella issues there) ty!

#

me when i have chronic tummy hurty problems lol

polar scarab
#

😅 realizing that all kinds of symptoms might be connected is the most relieving and concerning thing at the same time

limpid hornet
#

So i definitely need a wheelchair

#

I tried to go to the grocery store

#

was in and out of consciousness for 45 mins

indigo portal
#

pat pat

#

(im thinking that i may need a rollater for outings)

limpid hornet
#

I have one. But i forgot it at home because i didnt realize i was going to go to the store

#

The consequences would not have been nearly as bad

#

If i had that instead of my cane

slow token
#

What are some symptoms of pots and tests drs would do to diagnose u with pots

limpid hornet
#

Tilt table test

#

and symptoms can be a lot

#

Dizziness, exercise intolerance, blood pooling, nausea, fainting, feeling like you are going to faint. There's a lot

clever remnant
#

or if there are no tilt tables - there are none in the city I am from (its pretty small) they will make you lie down for 10 minutes then stand for 10 mins (or as long as you can - I always faint during lol) and take blood pressure and heartrate every minute.

#

And if you have a heartrate moniter (and even better, blood pressure cuff) you can do that test by yourself to get an idea of whether pots is something to consider

limpid hornet
#

I am feeling really bad. Can't eat or drink anything. Anyone have things that help that i don't have to put in my stomach?

#

could i lick salt and have it disolve in my mouth

ocean plume
#

Does anyone have tips, I have a partner with suspected pots, I don’t faint personally but they have been back to back. What can help limit the flaring symptoms. They don’t have anything I often use like compression socks or salt tablets. I often can handle my own symptoms but never really fainting I don’t know how to help with those flaring symptoms

clever remnant
#

It’s really the same kind of strategies I find. But when I faint I find it’s really important for my head to be held upright instead of bent over because that helps me breathe better and therefore not faint again after fainting a first time

limpid hornet
#

Yes! Its scary and everything when you wake up with your head flopped backwards and cant breathe

oblique wing
ocean plume
#

Thank you guys so much

grim ermine
#

Quick question is it bad if my heart rate is at 175 and not pass out 😭 (this has happened like 1 month ago and hi I’m Elisabeth I’m newly diagnosed with this)

ocean bearBOT
#

GG @grim ermine, you just advanced to level 1!

clever remnant
#

I don’t think so - everyone is different and - especially if you are shorter (less distance to pump blood) you may have a higher threshold for passing out compared to someone like me who is very tall and I pass out at 145

#

But regardless 175 is bad. Not passing out doesn’t make it not a problem.

crisp cypress
crisp cypress
clever remnant
#

Does anyone else’s doctors just tell them to not stand or walk and offer no solutions?! Like I have a pots diagnosis and faint after standing for 4 minutes. And people just don’t offer solutions other than medication which I have tried and doesn’t work! I am going crazy!!

grim ermine
grim ermine
limpid hornet
rocky latchBOT
#

yeah at that point a wheelchair is needed cos walking/standing isn’t safe

#

we’re at a point where we’re going to drs cos even with a wheelchair (for other reasons) our POTS is becoming unmanageable it’s normal for our heart rate to be in 90’s/100’s sitting up in a wheelchair doing nothing for the past couple weeks

quaint narwhal
clever remnant
#

It’s so annoying- like I probably need a wheelchair but I want someone else with a medical degree to tell me because it is such a big decision!!

limpid hornet
#

Yep. Exactly! I just avoid standing. So its like i need to get to the spot in the house, now where can I sit. Now!

slow token
#

So ik salt can help with dizziness if you have pots. Could it help someone without pots?

limpid hornet
#

I think in a general way. Like if you haven't eaten enough in general

slow token
#

Ok thx!

clever remnant
#

Yes it definitely helps! I am in a choir and people (without pots) are often dizzy after long hot concerts and salt helps them too!

limpid hornet
#

Ahh! I fainted and fell and it hurts

ocean plume
#

Been waiting over two years to get diagnosis for health conditions and POTS was one of them and now I’m getting a full diagnosis soon and so much to help from my new doctor who actually listens ^^

polar scarab
#

ik that blood pooling in the feet is a common symptom for pots, but what about the opposite? I've had issues with little/no blood flow to my feet, causing them to go white + numb. sometimes in my hands too, but not as often, and not to the same extent.

clever remnant
#

Yes that sounds a bit like Raynaud’s phenomenon which is very common with pots - I get it too. My fingers turn completely white

slow token
#

I feel like I’m always asking questions on here. But anyways. Does anyone have advice of being lightheaded all day. This whole week ive been lightheaded and school sucks.
I usually can focus in general but this whole week has been 10x worse. I don’t have a POTS diagnosis but I’m starting to suspect it with some of my symptoms. I’ve tried drinking more and that hasn’t helped I’ve tried adding more salt to my foods (mainly rice) and that kinda helped but only for a little. I’ve also realize pressure on my legs or lap helps a bit too until it’s taken off. Sometimes after standing to long or even just walking up the stairs my heart feels like it’s racing. Could this be a sign of POTS and should I talk to my parents or should I wait until after the holidays if it still continues? Any tips?

limpid hornet
#

Realistically you probably wont get an appointment till after the holidays

#

But schedule it as soon as possible

#

also do you have a heart rate tracker

slow token
#

No I don’t

#

And I dont think I would be able to get one

limpid hornet
#

Yeah, so i would just say try to schedule it. It will be after but the sooner you schedule, the sooner

half stratus
#

Doing a tilt table test on Thursday!!!!

#

Excited but nervous idk what to expect

limpid hornet
#

Guess who just got sent their custom wheelchair prescription and handicap plakard is on the way in the mail!!!!

clever remnant
#

thats so exciting! I'm so glad you are finally getting help!

#

How did you get the prescription? Was it through a gp

limpid hornet
#

Talked to my cardiologist

#

she wrote it.

polar scarab
#

finally got the official diagnosis!!

polar scarab
# indigo portal i see a cardiologist in january! Im so happy. Other then my smart watch records,...

just finished my appointment, so as promised: they did an ekg, makeshift tilt table test (just had me lay down for a while, sit up, stand up while measuring hr and bp), and ultrasound on my heart.

questions they asked me: when do you feel most dizzy? any chest pain? any fainting? how much water do you drink a day? any family history of heart issues? any past surgeries or heart issues? any issues at all when you were born? did you have to stay in the nicu?

hope this helps!! <3 best of luck at your appt!

half stratus
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Anyone else done a tilt table test? What should I expect?

candid jay
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does anyone else have a harder time breathing when they get cold? I'm used to not being able to keep myself warm but I've never felt like I couldn't get oxygen. When I move around I can feel my muscles fighting to get more O2 but I just can't catch my breath for some reason

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I thought I felt air hunger before, but was I not actually getting the full thing until all of the sudden? it's going on day 3, usually my "air hunger" is just a momentary thing that goes away when I do take in more air. idk 😂😅

polar scarab
candid jay
polar scarab
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hi ppl. anyone able to tell me what a pots flare feels like? can't tell if I'm flaring or just sick.

ocean bearBOT
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GG @polar scarab, you just advanced to level 6!

inner arrow
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There are a few others but those are on the top of my list

polar scarab
inner arrow
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im currently sitting at 90 but also im on stimulants right now so thats not unexpected

steady birch
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Does POTS commonly cause arrthymias? I've had them for about 2-3 months now but in the last month, they've gotten more intense and they give me shortness of breath and a tightness in my chest and my heart either speeds up or beats really weird and it lasts for a few seconds and goes away, however I have them more when I lie down and a few nights ago, they were VERY intense and back to back. I'm suspecting that it's Mitral Valve Prolapse but I can't be super sure. Does this sound like POTS or not?

polar scarab
steady birch
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Ok I will

formal jay
steady birch
formal jay
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entirely reasonable to be concerned! im currently on a medication called Propranolol which is a beta blocker that lowers your heart rate

royal yew
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I don’t have pots but I do I have symptoms. Is it normal for your heart beat to be 80bpm while sitting and then 125bpm while standing

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I don’t think it is 😅

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I don’t know how I would bring it up at my next doctors appointment. Just a 13 year old “hey um I think I have pots”

inner arrow
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Yea from my expeience its not normal but ig this could be just the way your body reacts, still something to bring up to a dr

royal yew
inner arrow
hot kelp
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I don't know when we're seeing our doctor again but we recently got a better watch for tracking our heart and when we stand up on average it goes up ateast 18 most being 31 but that was from stairs and it leaves us really out of breath and causes palpitations and we still see stars when we get up sometimes and standing is really hard and now I think we're feeling pain because of it (90% sure it might be unrelated) but anyway. Does anyone have advice to help with not feeling like ||death|| just from standing up?

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Is this normal?-
(censored for comfort)

SPOILER_Screenshot_20250101_222525_ApexWear.jpg
limpid hornet
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I would say no

hot kelp
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Oh.

limpid hornet
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I have no idea what i did yesterday. But i am incredibly dizzy even laying down. The only thing i can think of is sat up for like 4 hours. But that shouldn't cause damage. Annoying because i wont make it to my cardiolgist appointment. I couldn't walk enough today

oblique belfry
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Maybe low blood pressure?
My cardiologist prescribed me beta blockers to lower my heart rate but in turn they also lower my already low blood pressure. I'll get extremely dizzy and can't even sit up
Does it get better or worse when you put up your legs a bit?

atomic oracle
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I don’t know if this can go in here, but today I stood up for ten minutes, without walking, and my feet turned blue. Then I sat with my elevated for two mins, and they turned back into the normal color me feet have. Is that normal? I have pics of it too, but it isn’t very visible on them since the lighting was bad

oblique belfry
limpid hornet
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so i have spent most of today in bed with my legs up.

oblique belfry
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Hope it gets better as soon as possible!

ocean bearBOT
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GG @oblique belfry, you just advanced to level 2!

rocky latchBOT
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idk if this is POTS related but does anyone feel dizzy and feel like their falling and their head is spinning whilst laying down

inner arrow
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i've found that more related to my anemia but it could be a POTS symptoms for you

rocky latchBOT
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i looked it up and it says that it may be Benign paroxysmal positional vertigo but i dont have a fever and i dont have a head injury or a whiplash injury and i do also have anemia so it could be that

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it also said when i looked it up just now that Benign paroxysmal positional vertigo can be caused by Keeping the head in the same position for a long time, such as in the dentist chair, at the beauty salon or just laying down to go to sleep regardless of head injuries and stuff

oblique belfry
hot kelp
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We have to sleep with atleast 3 pillows minimum because we can feel the ||blood|| running into our head and it kinda feels like ||drowning ||

ocean plume
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Helllo, I have a question. so I’m trying to get a full diagnosis for POTS and most of my doctor have mentioned it and finally I see my first heart doctor and he doesn’t like the idea because I don’t have an unhealthy heart and my symptoms only get blamed on school, stress, and overthinking. But I get the same symptoms everywhere and even when I am fine I just don’t complain as much then because if I’m at home I have access to handling all my needs myself unlike school. I tried explaining but it didn’t get my point across . Any ideas on what might helps and if anyone else has gone through this. I really just want my point across because there is something wrong and they can’t seem to see it. I can’t get a new doctor as a minor and my guardian sides with them. Any ideas? Sorry to bother!

oblique belfry
# ocean plume Helllo, I have a question. so I’m trying to get a full diagnosis for POTS and mo...

POTS is a type of dysautonomia
Your heart is usually fine but sth in the autonomic nervous system is not.
My cardiologist also told me that my heart is healthy and strong and was confused as to why I'm here. When we (me and my partner who I was kinda using as a crutch at that time) explained he did this one test where you lie down for ten minutes, takes you blood pressure and heart rate, the quickly get up, take blood pressure and heart rate and then again after 10 min of standing. We also did a stress ECG (is that the name in English?) and a 24h ECG with my like main health care provider
He then told me that he can't diagnose is cause it's a neurological issue and referred me to a neurologist to rule out anything else :)

So yeah, even if your heart is healthy, the symptoms will still arise
Maybe try talking to your doctor again or try find another one (I know it's hard, but sometimes doctors just don't want to listen, unfortunately)
Hope that kinda helps /gen

ocean plume
# oblique belfry POTS is a type of dysautonomia Your heart is usually fine but sth in the autonom...

Thank you so much it does. We are getting a 30 day ECG and he told me theirs nothing wrong with me and POTS is just a term not an even a big deal which is red flag for sure. He also just says it’s all stress so it’s probably wrong with me which I doubt. He’s trying to see if my heart rate actually does spike because as like most other people I have good and bad days. When I saw him I was having a good day because I’ve been taking days off. I would get a new doctor but can’t as a minor and my parents don’t agree with my health sadly so it’s hard. Waiting for the 30 day ecg and then going back in six weeks and maybe then we can get our diagnosis! Thank you so much again!!

oblique belfry
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Ooof that sucks
But at least you're getting the 30 day ECG
Good luck!!!

ocean plume
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Tysm, it’s been such a long fight for just getting a diagnosis ;-; but thanks you so much for the information!

polar scarab
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anyone have any good high salt or high sodium snacks? I'm trying to find some for school, but everything is reduced sodium

limpid hornet
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Pretzels

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Plain enough for my sensitive stomach and salty

polar scarab
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👍thank you!!

grim ermine
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Dose anyone else legs go numb or start to hurt really bad during a pots flair up???

oblique belfry
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Yup, mine do that
But they also do that on a regular basis... So... Idk if it's related
But it does get worse then

rocky latchBOT
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Yep

rocky latchBOT
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if you like butter and bread you can get salted butter and spread it on some toast as bread and salted butter are quite high in sodium/salt

Indi_go 🔔 ↩️

[Reply to:](#1143691019242717308 message) anyone have any good high salt or high sodium snacks? I'm trying to find some for school, but everyt…

indigo portal
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So I just finished a workout, and I was a bit chilly the whole time, and my legs were ITCHING so bad, and now they doing like micro twitches in the muscles. Anyone else experience this?

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It’s winter and snowy outside if that helps, I was doing the stationary bikes at rhe YMCA

limpid hornet
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I get twitches after I faint

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After I wake up, before i can move for a bit

cold furnace
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I did the test this for alot of different things and my doctor thinks I have POTS to the point of ordering compression tights and a compression belt for me.

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Also was told to eat salt

fallen axle
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My friend has pots, there anything I can do to help her during a flare up or a bad day?

rocky latchBOT
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make sure that she has has enough salt and water ice pack on her to bring her blood pressure up if it has dropped as it usally helps or you can encourage her to rock her feet back and fourth and clencthing her fist and then unclentching agian and compression socks are a must have

the4kato ↩️

[Reply to:](#1143691019242717308 message) My friend has pots, there anything I can do to help her during a flare up or a bad day?

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*put

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i forgot to say put an ice pack

fallen axle
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Thank you

crisp cypress
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does anyone have tips on getting parents to accept me wanting meds? my dad really doesn't want me to take meds, even though i'm down to try literally anything that would help

oblique belfry
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I got a question
Does anyone experience this kind of 'kind of fainting but not rly but kind of' kinda thing where everything turns black, no vision whatsoever and falling (like the typical fainting stuff) but without loosing consciousness while at the same time not being able to rly do anything about it except for maybe turning around quick enough to land softly?
I never rly know what to call it

oblique wing
oblique belfry
# oblique wing it’s pre syncope! most people w pots experience it

Ok, thanks /gen
Cause whatever source I sound (eg. the ICD-10) for some reason only described that as dizziness in a way that everythings turning (like in German it's called Drehschwindel) and no rly anything else and it didn't feel quite right as I never get this 'Drehschwindel'

narrow oasis
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I do not know if it goes here but, I get tunnel vision and really dizzy when my Heart rate goes through the roof, does anyone else have that? Also does anyone else get triggered by different types of lights?

oblique wing
indigo portal
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I have an apointment with a cardiologist on the 29th! I feel like im overpreparing, but ive prepped

  • data from two at home tilt table tests
  • disgnostic data (age, gender etc)
  • two medical articles with comorbidity percetages
  • like 4 infographics

All of which has important parts like the symptoms i experience and such highlighted.
Call me captain Overkill but I'm not leaving without either a diagnosis or a damn good other explanation (/lh)

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all of this stuff is in a nice little binder :D

oblique belfry
indigo portal
ocean bearBOT
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GG @indigo portal, you just advanced to level 2!

cold furnace
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I got fitted for my compression wear today

limpid hornet
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Yay!

cold furnace
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I have the back brace and waiting for the tights to be shipped

limpid hornet
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Yay!!

scarlet oriole
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I have a question, is it normal for me before fainting that I don't have any symptoms as feeling dizzy or seeing black or that kind of things but still actually faint??

clever remnant
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Hello! When answering forms - what do you guys put down as accessibility requirements? Like i'm just starting the process of getting a wheelchair and can only stand / walk for 5mins before fainting. So I feel weird leaving it blank!

limpid hornet
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Do you use anything else? Like crutches or anything cause then i would say crutches or wheelchair

tired sage
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I have been in a flare up (I think, I'm not sure if that's the right thing to call it) for like the last few weeks, and I also got a cold too which made it worse. Does anyone have any tips for school today?

ocean bearBOT
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GG @tired sage, you just advanced to level 2!

unique goblet
ocean bearBOT
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GG @unique goblet, you just advanced to level 5!

limpid hornet
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Yeah. I have had a respiratory infection for almost a week on top if pots and mcas. And work wants me to come in

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Like b....

cold furnace
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Someone told me I'm a mermaid because salt water makes me feel better and like that079_psi_Impressed

jade flame
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Does anyone else experience physical exhaustion just in the legs? I cleaned parts of my flat yesterday and apparently I overexerted myself because I’m having a hard time walking today. Like, I can do it, but it takes a massive amount of energy and is really exhausting. I walked through the flat just doing my usual things and then had to take a nap because I was so tired from walking. The rest of my body feels relatively fine, it’s my legs that are the issue. I get this infrequently and usually either the day after or immediately after physical activity (cleaning, more walking than usual, stuff like that) and it lasts several hours usually. Is this a thing that parts of the body feel exhaustion more than others?

rocky latchBOT
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I can feel physically exhausted generally, but with my legs typically a lot worse I know that

cold furnace
jade flame
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Kinda nice to hear I’m not the only one! I’m sorry you both are experiencing this as well.

ocean bearBOT
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GG @jade flame, you just advanced to level 1!

clever remnant
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I get really bad leg pain from blood pooling when i am exhauseted

junior creek
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does anyone else get red spots all over their legs and sometimes belly when they shower? my showers arent very hot and the spots are not raised or itchy or anything and they go away about an hour after showering and i was wondering if its a pots thing or not

rocky latchBOT
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We’re not sure if we have pots or just bad circulation, but after the shower our legs are purple with red splotches

plucky horizon
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I think I do because I have 90% of the symptoms and I can’t be sitting on the couch for 1 minute and my whole leg is like ⚠️STOPPING NOW⚠️

clever remnant
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yep i have that and pots

oblique belfry
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Oof, multiple tests showed that I have pots, but now another doctor wanted to redo one cause I'm 'too young to be in a wheelchair' and today is a good day so the results look normal she said and that it's all psychosomatic
And Idk it kinda hurts? Cause what do you mean it's all in my head?
And Idk if I should just belive it's rly just anxiety or...

junior creek
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i think if multiple tests showed its pots its not just anxiety

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but i hope you get awnsers and a good doctor soon

rocky latchBOT
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Surely POTS is diagnosed over a long term average of tests rather than just one that could suggest it’s pyschosomatic instead?!

cold furnace
ocean bearBOT
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GG @cold furnace, you just advanced to level 7!

cold furnace
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Still technically have to do the tilt table test to officially have POTS, the PCP literally ordered medical equipment for POTS because they were so sure it was.

rocky latchBOT
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How can PTSD cause POTS symptoms?
I am literally the anxiety/PTSD holder for our system and experience our HR/BP issues the least…

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I know anxiety can cause a racing heart (ours got up to 145 just because of anxiety once)

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I don’t know

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Surely they’d test and rule everything out before saying “ohh it’s PTSD/Anxiety related”

lean minnow
# oblique belfry Oof, multiple tests showed that I have pots, but now another doctor wanted to re...

It can be very painful when doctors do not take you seriously or attribute everything solely to your mental health. Since the serverity of POTS can very from day to day, it is possible for one test to come back normal. But I personally think if multiple testes where positive before, that it is still likly you have POTS. I don´t know if you have the possibility to see another doctor, or if they are otherwise nice, mabye they can redo the test on another day (it also can helpful to test it multiple times at home and bringing the results).

oblique belfry
oblique wing
oblique belfry
# oblique wing genuinely don’t bother. doctors like that who dismiss confirmed diagnosis and se...

Same test as they did today (Schellong test or sth... The one where you lie down for ten min and then stand for ten min and they take blood pressure and heart rate) cause apparently there's no doc near that has the equipment for a ttt
And then at the neurologists, they did some test to make sure it can't be anything else (like tested my balance, eeg, mri) and we also did an 24h ECG in which you can clearly see each time I got up and sat down again
We also did some blood tests to rule out any other issues like iron deficiency and stuff

oblique belfry
oblique wing
# oblique belfry She also wants to sent me there cause she thinks my Ptsd affects the psychosomat...

if your open to the therapy they offer then i’d say that it’s a great option because therapy is a great option to obtain sympathetic nervous system regulation techniques (which is probably what your doctor wants you to learn w therapy). but i wouldn’t 100% count out that your POTS isn’t caused by your PTSD. sometimes psych disorders can exasperate symptoms but aren’t the cause of them 🫶🏻

cold furnace
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Throwing ibs in there doesn't help either

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They still don't know what causes the pain/spasms

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The fainting and numb legs/arms is probably POTS though

limpid hornet
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Blood pooling, ow

clever remnant
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blood pooling is the absolute worst!!

ocean bearBOT
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GG @clever remnant, you just advanced to level 8!

indigo portal
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cardiology aapointment tomorrow! im feeling so many things about it

limpid hornet
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Hopefully excited?

indigo portal
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i lucked out holy heck. First off, he never made me feel like it was phycosomatic. And even was like "when some people report X symptom, but we can't find it on our tests, that can mean that we aren't looking in the right spot."

actually blown away /pos
he also is super booked so he ordered a Tilt table test and an echocardiogram before he left

candid jay
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that's awesome!!!

indigo portal
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plus he was super kind and encouragin in general, like, I feel like i won the lottery

limpid hornet
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Yay!!!

jagged fern
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I've had 2 doctors tell me they suspect POTS but tonight my heart rate won't go down at all (110 when sleeping, 130 when lying down) at what point do people suggest I go to walk in centre/ a and e (out of personal experience don't worry I'm also consulting nhs 111)? (I just don't want to go to a and e simply to be told oh its nothing go away)

rustic kestrel
limpid hornet
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Try a cold bath

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It brings mine down

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and legs uo

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up

oblique wing
cold furnace
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Taking a shower almost killed me. My heart started pounding and my head got fuzzy. I got out before I fainted

warped anvil
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my heart was going slow and pounding, my vision went red and i felt dizzy and sat down just in time.

slow token
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Any tips on how to bring up possibly having pots to your parents? This is something I struggle with bc they tend to take things lightly and brush it off as not enough sleep or drink more (even tho I have). Feel free to ping me if you’d like

ocean bearBOT
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GG @slow token, you just advanced to level 14!

limpid hornet
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that would be solid proof

slow token
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I used to but the strap popped off during school and I’m pretty sure that got stolen. But I’m going to ask for one for my bday in a couple months

warped anvil
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i.e. lightheaded, dizzy, generally unwell.

slow token
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Ok. I’ll try that

gritty smelt
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I don't have POTS diagnosed but i am suspecting, and somehow my legs always fall asleep, no matter how i sit, even if i fully stretch them, they still manage to fall asleep

warped anvil
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I have CFS and everytime I try stand up too quickly I fall backwards from dizzyness and blurry vision or palpatations.

gritty smelt
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Aah that sucks :( very relatable

manic tendon
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do any of you guys have any tips on singing without getting || dizzy or passing out? || I’m curious because I want to join my local choir but am having a hard time not getting flared up from singing.

steady birch
scarlet oriole
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Hiii

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I just wanted to vent a little about what happened yesterday
Well yesterday I fainted 2 times in the same class, they had to call the nurse because of it and I was so embarrassed that when I had to go to class again I couldn't

junior creek
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Hii everyonee!! I kinda need some advice, I just got myself a shower stool cause showers are nearly impossible for me but the stool helps a lot! The only problem for me is getting up from the stool after the shower, i cannot get up at all without nearly fainting😭 I already take showers at night so I can go straight to bed afterwards but I'm trying to find a way to help me get out of the shower a bit more easily. Google isnt really giving me any advice and I can't think of anything myself so if anyone knows what I can do to help please ping me I'm desperate

radiant dragon
slate gazelle
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yall, i need advice my parents don't belive me so im stuck with this stupid invisible ||illness|| and im being called an attention seeker by peoplr but i cant stand with out my heart rate sky rocketing and my vision fuzzing out. So idk what to do