POTS chat

[quaint narwhal]

Yep!

Extra confirmation works

[half stratus]

Yeah, at least I have a diagnosis I just gotta deal with annoying find what works stage

I’m also in the there’s something wrong and not even doctors know what’s wrong stage

[quaint narwhal]

I’m at the Neurology stage to check my head.

I think my doc is losing his mind for some reason

He said Orthostatic Hypotension is what it sounds like but then went the opposite direction

I hope I get a diagnosis soon though.

Crossing my fingers so tightly

[half stratus]

I hope you can get a diagnosis too

Why does ||eating|| have to be so difficult? I get so breathless very time I try to ||eat||

[quaint narwhal]

I’m not the only one? 💀🥲

I’m sorry you go through that

[half stratus]

You deffo aren’t the only one it’s so annoyinggggg

[quaint narwhal]

Drinking things is worse!

[half stratus]

Oh yeah deffo, both are real bad

I used to be so active and now I can barely walk long without feeling badddd

[half stratus]

Sometimes I feel like I can’t ||Breath|| when I drink it cause me to panic so it’s always difficult

[quaint narwhal]

Me too! Especially with water but that’s why I prefer straws.

Guzzling is a bad idea with it though

[half stratus]

I do have a strawed cup so I might have to use it more

[half stratus]

I usually just take small sips of my drink so it’s easier

[quaint narwhal]

That’s what I do mostly.

[half stratus]

Why does pots makes the smallest things so difficultttt I want to function

But I can’t

[quaint narwhal]

Idk! Who heccin knows

I get it though, I’m sorry you suffer so much

[half stratus]

Doesn’t help when I have like 7 other disabilities aswell to pile on

Like Tourette’s, adhd, dyslexia and more

My energy is chronically low

And I have hypersomnia on top of that

https://tenor.com/view/flop-on-bed-tired-going-to-sleep-bedtime-gif-15735365

The universe hates me

[quaint narwhal]

Haha same.

Autism
Dyslexia
Dysgraphia
Auditory Processing Disorder
Verbal Apraxia? (slurred speech at random moments, stumbles on words)
RSD
PDA
Probably Mild Tourette’s
Complex DID
BPD/Cyclothymia or both

[half stratus]

Me it’s

1. ADHD
2. Dyslexia
3. Tourette’s Syndrome
4. Functional Neurological Disorder (FND)
5. ||Non epileptic Seizures||
6. Anxiety
7. Postural Tachycardia Syndrome (PoTS)
8. Irlens syndrome

[quaint narwhal]

Oh I forgot! ||Non epileptic seizures|| induced by high stress

But it’s rarely.

I’m thinking it’s trauma induced

[limpid hornet]

My heart is saying just no today.

[limpid hornet]

Myi feel really weak and my Fitbit is dead but my chest feels. Tight.

And just dizzy. While doing nothing. I just feel like crap.

[fervent remnant]

went outside in the heat today and had to walk around (was at like a shopping center) so i felt super lightheaded and like i was going to faint

[fervent remnant]

should i tell my people that i am experiencing pots symptoms??? I havent told them yet bc im scared and idk if they would think that the elevated heart rate is because of my age or smth (younger people tend to have faster HR apparently)

[fossil musk]

Probably just explain the symptoms you're experiencing without saying the condition they are related to (POTS) unless you are asked.

[half stratus]

Why does sitting with pots be difficult sometimesss I just wanna chill and something is like hello hello!

[limpid hornet]

I pushed myself too much. I feel like I am going to pass out

[limpid hornet]

I think I passed out b

I remember pulling in my driveway. Laying down because I got really dizzy. And that's it. Then .y roommate is knocking on my door

Brain still feels really fuzzy

[oblique wing]

it’s because of blood pooling a lot of the time! putting your feet up or laying down can relieve it a bit!

[mellow sedge]

I go to a race track with my dad and it requires me going up and down stairs in 100 degree weather all day and being outside like my resting is 50-60 and being in outside I can't even get below 80 sitting and almost 200 standing. Drinking lots of water and salt can only do so much :-:

[limpid hornet]

Does passing out take a bunch out of people? It happened this morning and I am still not 100%

[quaint narwhal]

Yeah.

Even though I just get presyncope, when I get really bad it takes a lot out of me.

[limpid hornet]

I am at like 80% now.

But I am still too weak to go more than a couple feet without my crutches

[serene vapor]

Yes

[half stratus]

Ah I see, i might have to wear my compressions socks more often then

[fossil musk]

I do not like it when my ||tics|| mimic my near-syncope.

[half stratus]

Anyone else with pots just not deal with any kind of syncope? Sometimes I feel I don’t always have pots when I don’t have the symptoms but I know I do have it and I am diagnosed

[limpid hornet]

Maybe just not in flare up at that point?

[fervent remnant]

yesss

[fossil musk]

Ah yes. Randomly blurry vision. Fun.✨️

[limpid hornet]

I cleaned my car out and my heart is going very very very fast.

I do not feel good

[half stratus]

hope you feel better soon

[limpid hornet]

I just need to lay down.

but I am being stubborn and using my crutches and still pushing myself

[half stratus]

i need to use my stick morewhen im walking, im getting a new one hopefully saturday

[limpid hornet]

does it also help keep your heart rate down?

[half stratus]

no unfortaletly

[limpid hornet]

I am not sure why it helps. maybe just less effort or less scared of falling?

[half stratus]

fair enough

[limpid hornet]

also my fitbit died

[half stratus]

ack i have an huawaei watch, which isnt great for my hr but it shows my range which is handy

it helped me dx with pots

[limpid hornet]

so I am nervous because I can't track my heart rate. I just know when I can feel it super super fast. and by that point, too late.

I got a new one that is coming tomorrow

mine gives me warnings

like 130 it tells me too high. I can ignore it if I am exercising on purpose. but I like that it tells me so if I am not doing anything I know to take a break

[half stratus]

Just take it easy today

And wait for tmr

[limpid hornet]

I have a doctor's appointment today so that's good I guess

Going to get referred to a cardiologist. Who can diagnose me

[half stratus]

Niceeeeee

deffo show the evidence on your phone of your hr if you can

It helped a lot for me to get a quick diagnosis

[limpid hornet]

Yeah. I have some stuff

Not as much as I want

[median yarrow]

i just walked from my room to the kitchen and back and had to lay face down because i got so dizzy. i really need to get a heart rate tracker because i can feel my hearbeat everywhere right now

[ocean bear]

GG @median yarrow, you just advanced to level 9!

[median yarrow]

my house is not that big. why am i incapacitated so badly

[oblique wing]

heat is absolutely awful 🙃 why is it 100 degrees 💀

[median yarrow]

luckily it’s been cooler where i am recently, we’ve been around 85-95 for a week or so (it was like. 110 or higher before that 😭)

[limpid hornet]

So I am going to see a cardiologist. And I am getting a heart monitor sent to me in the mail

This process is Soo slow

[median yarrow]

the good thing is that it’s started right?

my mom just got me a fitbit for college with a heart monitor in it so i can keep a log now 💪

[limpid hornet]

Yeah. Mine is coming Monday

[quaint narwhal]

I’m grabbing myself one when I’m able to to keep an eye on BP and HR.

[limpid hornet]

Want recommendations

I know a lot about them

[quaint narwhal]

Sure!

[limpid hornet]

Ok. Would you like a big screen or small.

[quaint narwhal]

Doesn’t matter

[oblique wing]

i had a fitbit versa 3 and i wouldn’t recommend for tracking heart rate, it only updated every 5 minutes

[limpid hornet]

I like the sense.

Don't go above the versa 3 or sense. Cause Google took control of the company and took away features

[upper vale]

So recently sometimes when i stand an walk around i get really out of breath and my heart feels like its fast, im assuming yhis isnt normal? I have other symptoms that could possibly be hEDS, or somthing else bht this is a new symptopm

[bleak niche]

most things just changed/got a different name and Fitbit still has one of the best hr monitors

I Don't really use fitbit products and I know google isn't always best but most hate that they got after taking over fitbit is just people who used fitbit all their life and didn't like that some things changed a bit (like fitbit pay to google pay which eventually ended up being so much better lol)

my main reason for not going with fitbit was because I don't like the way they look lol

[limpid hornet]

I like the third party apps. And those don't work on newer ones

[half stratus]

I mostly use huawawei health to track my HR but I might be getting an Apple Watch eventually

[rustic kestrel]

Definitely see a cardiologist, it's important to get symptoms like this checked and there could be medication that helps with your symptoms

[ionic pagoda]

i use the watch samsung 4 and its really good /gen
only downside is the battery!!!!!! it only lasts 1-2 days (depending on what you use/how often etc) so be aware youre gonna have to charge it a lot.

[sorry im a bit late to the heart rate tracking devices convo)

[bleak niche]

watch out with apple and Samsung watches if u don't have a phone from the same brand

for example an apple watch will probably only work with an iphone

and I know for the Samsung one they just block certain functions on non samsung devices

which can be enabled but requires some work and can be a bit technical

[quaint narwhal]

👍🏻👍🏻

[quaint narwhal]

We have mild compression socks, but they don’t work the best for us, we don’t use them, should we throw them out?

[ionic pagoda]

if youre not gonna use them anymore, maybe give instead? /nf

[quaint narwhal]

I don’t have anyone who needs them.

I would rather give them but there’s no one who needs them as far as I know.

[ionic pagoda]

oks! i know where i live there are big boxes on the street where you can put clothes and theyll donate them.
other than that, you can give them like in thrift places?
or organizations that collect clothes to give them away? (i understand if this is too much work lol)
also, we have a thing called emmaüs here, idk if you have that too, but you can give clothes or items and theyll sell them back to low prices (kinda like a thrift shop tbh)

[quaint narwhal]

I had those donation bins in my hometown but idk where to find them in the city.

I would drop them in the clothes bin in the shelter but idk if they take compression socks.

[ionic pagoda]

can always ask /pos /nf

[quaint narwhal]

Yeah. Just awkward to do.

[upper vale]

Recently i have been doubling my long school socks with other socks underneath as makeshift compression socks and theyve been working ok i guess

[upper vale]

Homeless shelters?

[limpid hornet]

Anybody else get their heart rate monitor sent to themM

Like In the mail

[quaint narwhal]

I live in one

[upper vale]

Oh

[rustic kestrel]

My first one was fitted at the hospital, one of those old school ones with the chunky box, but my next one is coming in the post, should be a bit more discreet apparently because it's worn for 2 weeks straight

[limpid hornet]

Yeah. That's the one I am getting

I am getting like black spots in my vision and everything is spinning a little bit

[limpid hornet]

Ok. I layee down for a little bit. I no longer feel faint

Still dizzy but not faint

[median yarrow]

my heart rate keeps dropping from like 110 to 85 and i feel like that is. concerning

i’ve never tracked my heart rate before though so maybe it’s normal

[half stratus]

I can’t tell if my pots is doing and pots as I don’t feel good

[bleak niche]

mine dropped from 140 to 53 yesterday LOL

[median yarrow]

i haven’t been able to track it when i’ve been practicing (in a musical rn) because we’re in costumes and my fitbit is not allowed but i’m sure it’s been ridiculous

[ionic pagoda]

stan can u stop saying concerning things and then saying you're completely okay /hj /lh

[bleak niche]

I mean it wasn't 1 second it was like a few minutes

[half stratus]

I’ve had some improvement to my HR! Woo!

[ionic pagoda]

YAY!!!!!!

go scoots!

[half stratus]

Yayyyyy I’m very happy

[torpid kernel]

YAYYYY!

[ocean bear]

GG @torpid kernel, you just advanced to level 7!

[limpid hornet]

So my heart rate is not stable and I am exhausted and get dizzy really easily. I am having a hard time with just needing to rest.

[median yarrow]

my mom just said that my heart rate keeps spiking because of “anxiety”. no mom i have a Condition

[rustic kestrel]

Do you have a formal diagnosis?

[quaint narwhal]

Pretty much

[oblique wing]

i mean she’s not wrong. an increase in anxiety increases adrenaline release which in turn elevates your heart rate. if you have pots and anxiety then it can be both. two things can be true at once/gen

[median yarrow]

i know! i don’t doubt that anxiety is a factor in my life, i was just saying that anxiety was not the reason my heart rate was 159 when i was standing and not doing anything else

[limpid hornet]

When you stand up and the world seems to fade into white

[hot kelp]

I have a pretty good trick for this from my physical therapist. 10 seconds before you stand up, squeeze your hands into fists, and tense your leg muscles. Do that for at least 10 seconds, then take a deep breath, and stand up. This exercise will put your blood pressure up in a normal slow way instead of shooting up and then getting dizzy and white when you stand up. Hope this helped

[quaint narwhal]

For me it fades to blue/black lol

[limpid hornet]

Let's play what does it feel like to pass out for different people game. Lol

I can actually just sit down or lay down or even sometimes just stand there for a second holding onto something and it will pass

[limpid hornet]

Yes. This. This is what I need people to understand. Its not all anxiety.

[limpid hornet]

Would this work sitting up too

Also my heart just feels like it's racing most of the time

It's uncomfortable

Anyone else like almost pass out. Like go limp but still conscious. Sometimes my eyes even close but I can still hear I just feel extremely weak

[half stratus]

Mhm! I have NES! So I become limp

[half stratus]

That could be a sezieur! Non epileptic one to be exactly as I have exactly those symptoms. I become limp and can hear but cannot respond

[rustic kestrel]

If it's all the time and unrelated to position it could well be IST not POTS

[rustic kestrel]

^

[hot kelp]

Yessss!!!

[hot kelp]

Yes for sure. I used to have this a lot and no one knew why, doctors couldn’t find out what it was. Now I have it when I go through intense activities or sometimes just random. I’m not sure what it is. Doctors here also don’t know 🤷‍♀️

I just feel like a tingeling from my toes to my head and I just fall down/go totally limp, and I also have my eyes closed, but I can’t move or sit up or anything, but I can hear what everyone says but I can’t respond. This takes about 1 minute, but I’ve had 10 minutes before. It’s kind of scary because you can’t control it but you’re like stuck in your own limp non-responsive body

[limpid hornet]

Yes. This. It was only like two minutes I think but scary. Definitely

[oblique wing]

i need everyone who related to that to talk to a doctor about cataplexy 😭👆

[hot kelp]

Never heard of that, I’ll do some research

[hot kelp]

Yes, sometimes it’s weekly for me

[limpid hornet]

I thought it was related to my heart rate because it happened after I pushed myself a lot. I didn't feel good then I sat down and I couldn't move and went limp.

But who knows

[hot kelp]

Same, I relate to everything ur saying

My doc couldn’t find out what it was

But Dutch doctors sometimes don’t really LOOK ykwim

They just assume it’s ‘puberty’ while I’m almost 17

[oblique wing]

honestly i need to do research about it my self 😭 but yeah the i get that feeling and need to mention it (i always forget)

[oblique wing]

💀 american docs are more often a miss than a hit, but cataplexy would be best talked about with a neurologist or sleep dr

[hot kelp]

I’ll check it out, thank u. I’m currently on vacation without my parents so I cant do anything about it for a while

(I’m at a host family)

[limpid hornet]

I can barely make it through a work shift now.

[half stratus]

Hello! Has anyone done a tilt table test? If so what should I expect? And how did it go for you?

[rain garden]

I have! I think it differs a bit for everyone though. I had to lie down flat on the table for about 10 minutes, then they slowly tilted it upwards to around 70 degrees. To keep you in place they strap you into the table/ bed (which may cause panic for some people). I wasn’t allowed to eat before the examination either. Anyway, they let you stand there for about 20 minutes (sometimes a little longer) and you will be connected to an EKG/ECG to monitor your pulse and blood pressure. I don’t know how common it is but for some they can use nitroglycerin to trigger fainting. I was first diagnosed with orthostatic hypotension (when I was younger) and then after this test they diagnosed me with POTS bc of the increase in heart rate. So that’s just my experience. I have hEDS as well so being strapped in for so long caused my knees to sublux, so for those who are hypermobile like me, that may happen to you too. But not necessarily ofc ❤️

[half stratus]

Ah I see! Thank you so much for the insight! Not sure what sublux means but I have slightly hyper mobile in my hands but not my legs so I think I’ll be fine. Just gotta get used to being strapped down

[rain garden]

Yes! I hope it goes well! (Subluxation is basically a partial dislocation, do you know what that is?)

[half stratus]

Thank you (I don’t know much on the topic im guessing when the joint goes out of place?)

[rain garden]

Yes exactly

[half stratus]

I can do kinda that with my thumb but that’s about it

I can also out my thumb to my arm on both hands

[limpid hornet]

I have been at work less than two hours and already had to lay down cause I was getting lightheaded. Fun

[fervent remnant]

Hello, so I wanted to come here to ask if my symptoms describe POTS, so yeah, these started about 4-5 months ago and it has only gotten worse since then. I get lightheaded when i stand up all the time and sometimes my vision goes weird, i decided to check my heart rate (with a at home pulse oximeter) and it goes up by 30-40 BPM when i stand up and about 20 BPM when i change positions, also exercising is harder (than before the symptoms started to get worse) because i get lightheaded so easily now, i do also get lightheaded when i stand for prolonged periods of time, and other times i do feel heart flutters. and on bad days, i just continuously get that feeling of having to faint, also when i pop my neck sometimes i get dizzy. anyways, what are you guys thoughts?

[oblique wing]

i’d definitely talk to a doctor who’s familiar with pots and dysautonomia! sounds like pots but they may be able to help more and make sure than nothing else is going on with your heart, or if you have a different condition with similar symptoms

[limpid hornet]

It will probably take forever to get an answer. Beware

[quaint narwhal]

More than a year. Because ✨Doctors✨

[limpid hornet]

Yep

[fervent remnant]

i told my mom and she says that it could be stress, but... like i dont think stress can cause the exact same symptoms as POTS?

[limpid hornet]

Stress can do crazy things. But your mom isn't a doctor so maybe just say I don't know for sure but can we get it checked

Cause sometimes saying parents are wrong doesn't go well

I am not saying either of you are right or wrong btw

I want to clean but I am feeling ok and if I stand up for too long I start to get dizzy so I kinda think I should just stay down.

[limpid hornet]

Fun. I didn't exercise today or yesterday btw

Not heavy. Like I walked and did Normal activities

[muted imp]

I’m getting a TTT and QSART on Tuesday, I have to be off of some of my meds for the next 2 days leading up to it, and I’m honestly really nervous. I have to be off of my adhd med, my heart rate/anxiety med, my allergy med, and one of my sleeping meds, so I’m bound to feel like shit. I hope I get answers though. I have been having progressive symptoms for 2 years now, but started paying more attention to it almost a year ago, and reached out for help 6 months ago. I have been having terrible flare ups for a year now, but it started out as fatigue, exercise intolerance, and what looked like anxiety, but was really just tachycardia.

[rustic kestrel]

Best of luck!

[languid star]

Good luck

[fervent remnant]

Wishing you the best of luck!

[oblique wing]

just had literally the worst drop 😭 160+ to 55

luckily my moms home and my sdit was there, i didn’t faint god knows how 😭

[quaint narwhal]

I’m sorry. That must’ve been scary.

Hope you’ll be ok Ky.

[oblique wing]

i’m fine lol just sucks 🙃

[quaint narwhal]

Ikr.
Idk if my heart rate goes up.
But I get palpitations and my BP drops.

I have yet to see if my HR goes up when I stand.

[oblique wing]

do you have a watch or pulse ox? you can just use that to see/gen

[quaint narwhal]

Not yet. Planning on getting one.
Is there any cheap-ish but good ones you’d suggest?

[oblique wing]

i’m have two from walgreens, ones ok the other is pretty good but they can be a bit pricey

https://www.walgreens.com/store/c/walgreens-pulse-oximeter-with-respiratory-rate/ID=300407254-product

this is the one i’d recommend from walgreens (if you have that where your from)

there are others that are probably less expensive but i can’t vouch for them. also with pulse ox you can tell the difference in the prices, such as how long it takes to register

OH!

if you already have a blood pressure machine that takes hr you could use that!

[quaint narwhal]

We don’t have a Walgreens in Canada unfortunately. Except Toronto apparently lol.

[quaint narwhal]

I don’t sadly. I got told by my cardiologist after my stress test that I have low BP.

I have a Rexall and Walmart and Shoppers Drug Mart.

Because I’m debating if a Fitbit would be a better choice. Or what options there are.

[oblique wing]

walmart does have cheaper ones ik that but im not sure ab the quality

[oblique wing]

i had a versa 3 and meh, it only recorded every 5 minutes so i could see my real time he but if i wanted to show if to the dr… i was out of luck

[quaint narwhal]

Yeah.

I’m sorry

I’ve heard iffy things on Verse. Think it was this chat that mentioned it.

[oblique wing]

probably me lol i’m a hater/hj

[quaint narwhal]

Probably but not a bad thing when things don’t actually help right.

[oblique wing]

exactly lol

[half stratus]

You know you have pots when your water bottle looks like this lmao

Drinking all the waterrrr

[languid star]

Love the water bottle

[hot kelp]

I just stood up and my hr went from 86 to 122 🥲

[half stratus]

Highest hr today was 119! Improvmentttttttt

[bleak niche]

67-161 😎😂😭

[half stratus]

Stannnnn

[bleak niche]

that's me :))

[ionic pagoda]

stan you are NOT okay

[half stratus]

What were you doing lmao

[ionic pagoda]

(/hj bc it depends on what you were doing but ik for a fact you are still NOT ok)

[bleak niche]

not much it was 42 degrees today 😭

[half stratus]

You uh, have you tested your hr sitting and standing lmao

[bleak niche]

yes

my doctor even did an ECG

apparently I'm fine

well

my cardiologist didn't really agree

but like my gp said everything is fine

[bleak niche]

(nothing bad btw just have to go back next year)

but when I went to my gp for my not seeing anything whenever I stand up and high hr when standing up he did a blood test and ecg and said everything is fine

and I just stand up too fast

oh yes and my vitamin d was extremely low

so I asked him if I needed to do something

and he said nah

my brother got a blood test at the hospital and his vitamin d was a bit higher but he had to get boost pills lmao

[ionic pagoda]

did the ECG include postural changes or were u in 1 position not moving the entire time? /nfta bc if you're mostly having issues everytime u stand up,, then an ECG alone doesnt sound like its enough

[ionic pagoda]

why not giving u vitamin d supplements to get it back up

[bleak niche]

well cuz he said that wasn't necessary

[ionic pagoda]

sob

[bleak niche]

I was at like 25 and ur supposed to be at 100 everything under 80 was lower under 50 was too low and under 30 was dangerous (according to internet)

[bleak niche]

nope lmao

I know

I told him

and he was like meh

[ionic pagoda]

..can u switch GPs or /hj

[bleak niche]

well he's retiring so I'm going back after I get back from vacation

the new guy is way nicer and listens to me lol

[ionic pagoda]

:))))

[bleak niche]

I also had problems with hayfever where my meds didn't do anything anymore and my old gp didn't really do anything and my new one was just like oh yeah no that's possible try this that should work

and it works 😭😂

[ionic pagoda]

im glad it does!!!!

yay for the retirement

:)

[bleak niche]

I just checked the video from 2 weeks ago

and it went from 78-145

[rustic kestrel]

Yo what 😭 casual medical negligence yikes

I just had to do the high dose booster because I was at 17.. it is dangerous to be that low

[oblique wing]

well good that you got that done you need a halter monitor 😭

[bleak niche]

yeah they didn't specifically test for it I think because they knew it was under 25 but didn't give an exact number

[limpid hornet]

This this is the wall I am running into

[quaint narwhal]

Oh gosh. 😅💀 I’m sorry, hope you’ll be alright.

It sucks to have Bp and hr issues 💀

I mean my Cardiologist said I have Low BP after a stress test, then said only a pinch more of salt and hydrate more, then walked off.

So, doctors are shit sometimes

[bleak niche]

mine just said we saw something on ur echo but we don't really know what or why so come back in a year or if you feel something (it was just a normal checkup cuz heart problems in family)

[oblique wing]

i mean that’s what your supposed to do for hypotension , salt has been proven to raise bp (which is why hypertension ppl limit salt) and dehydration can lower your bp, if that doesn’t help then medicine can be discussed but cardiac medicine should never be first option/gen

[ocean bear]

GG @oblique wing, you just advanced to level 11!

[oblique wing]

yeah that’s shit 😭 not ok

[bleak niche]

I'll be okay😭

it wasn't anything to worry about lol

[oblique wing]

abnormal echo shouldn’t be a “come back in a year” situation 💀 not without a clear diagnosis with confirmation of severity at least 😭

[bleak niche]

well it's nothing to worry about

just something small lol

like it's something that could potentially become something some day but not enough to actually diagnose anything today cuz it could even be an error from the machine lol

and my whole family gets 5 year checkups anyways but I just have to go back next year to see if anything changed

and if it did they can do something

[quaint narwhal]

I know but even my doc shook his head at my cardiologist’s words, said it’s never just a little when a cardiologist recommends salt for low blood pressure

[quaint narwhal]

RIP
Hopefully you get answers sooner than later

[oblique wing]

yeah you should be taking salt as directed on a salt pill bottle a little is not enough info 💀

[quaint narwhal]

I generally don’t have improvement with salt though

I’d been adding little bits of salt since before I was told.

Only time salt helps is through Electrolyte drinks

Though I find salt sweeter when I need it

And bitter when I don’t

[oblique wing]

never heard of that lol, to me salts just salty/gen

[oblique wing]

me neither but it’s always first recommend bc bp meds can be finicky

[muted imp]

@quaint narwhal Electrolyte drinks are my go to for my orthostatic intolerance. I find that salt pills give me stomach aches. Adding salt/electrolytes and fluids is a great way to keep one’s blood pressure up, but some people require more than that and that’s ok.

[ocean bear]

GG @muted imp, you just advanced to level 3!

[quaint narwhal]

Yep. I’m not looking for meds anyhow, just something that’d help me cope, unless it was a miracle cure or something, something that was actually going to work and not be fake.

[muted imp]

To be clear, I’m still really symptomatic with the stuff I’m trying, I’m not cured or anything

I wish water cured me

[quaint narwhal]

That mostly is my save. Though my electrolytes and Compression socks aren’t helping atm. They usually help lots but not recently.

[quaint narwhal]

Mostly just coping well as I can myself, mostly looking for diagnosis and maybe financial support.

But that’ll come slowly.
Though my doctor suspects Orthostatic Hypotension.

I need to have a simple TTT to see if it’d be one or the other. But rn he says brain scans to see if it’s in the brain.

[oblique wing]

yeah i have oh and pots, im on a very small dose seteroid for the oh, it’s literally like .1 mg if you don’t like meds, it literally just enough to bring my bp up to a bit more normal

[quaint narwhal]

Coolio. Does it help?

[quaint narwhal]

Same!

[oblique wing]

yeah! literally just went from like 80s/50s to a normal bp lol

[oblique wing]

same 😭 was literally drinking 100oz of water a day just so they couldn’t tell me to drink more

[quaint narwhal]

Hm I usually have 90’s/60’s when sitting I think it was that I got told.

My walk in doc did a poor mans tilt table, she went “hmm, interesting…” and wouldn’t tell me what the results were, even when I asked.

[oblique wing]

that’s actually awful 😭

[muted imp]

Every single doctors appointment is like “HaVe YoU bEeN dRiNkInG eNoUgH wAtEr???”

[quaint narwhal]

Weirder thing is she didn’t recommend further testing and instead wanted me to go to a psychiatrist.

[quaint narwhal]

Our grandma (abuser)

[oblique wing]

ew bad drs man 😭🙄

[quaint narwhal]

Ikr! She was a doc at 2 clinics in the city too 💀

Still is I believe

My new doc seems to know his stuff but seems greatly overwhelmed.

[oblique wing]

yeah i bet 😭 all drs near me are booked up, im still waiting for go to call back for an appointment (they can’t even write me in they’re booked for 1yr+)

[quaint narwhal]

Omg, that’s not good.

I’m so sorry. I know the pain kinda.

[oblique wing]

yeah but it is like a number 1 motility clinic 😭 it’s literally upenn and there’s like 2 drs

[quaint narwhal]

My doc is in a new area ish and the place requires walking through a rather large shopping area. Like 2-3 malls in 1.

I should map out the distance from the bus stop eventually.

[quaint narwhal]

Yeesh. I can only guess how they must have testing. The wait lists must be long.

I was lucky I got my CT scan free and I guess sooner than it would’ve been. September but it’s still a bit of a wait (booked last month)

[oblique wing]

yeah i’m in the process of getting a new neuro which means i probably need new updated testing for everything 😬 probs ct,eeg,and mri

[oblique wing]

i’m happy it’s so soon for you! three months isn’t bad!

[muted imp]

I’m finally seeing a specialist tomorrow, as well as getting a TTT. Let’s just say my appointment is really far away, and my mom and I get to have a “fun” day trip. I know the ttt is gonna suck, hopefully this nurse practitioner who specializes in pots can say something other than “just push through, maybe it’s anxiety, have you tried xyz?” I’m honestly really scared

[quaint narwhal]

Eeesh 😬
Yeah, I hope that goes quickly and smoothly. /gen

[quaint narwhal]

Me too! Let’s just hope proper diagnosis follows.

[muted imp]

Good luck to all, I have to get to sleep.

[oblique wing]

i’ve never gotten a ttt before so good luck 💕🍀

[oblique wing]

night!

[quaint narwhal]

Wooo, funnn. But hopefully the wait just flys by and it helps you get answers.

[quaint narwhal]

Nor have I. Though idk if poor mans tilt table counts.

It’s a half-assed.
Though my dumb butt drank a Gatorade that day.

[oblique wing]

it’s definitely not as intense as a reg ttt, so probs not. it’s enough to dx tho

[quaint narwhal]

Yeah. Thankfully.

[mellow sedge]

Finally spoken to a doctor about our heart rate doing all the weird stuff!

Getting an ECG and ||blood tests|| done, along with a blood pressure thing whenever I feel the “episode”

[limpid hornet]

So I was supposed to press a button and fill out a symptom journal. And I was never told this. Not mentioned once!

[mellow sedge]

…
We’ve just been told to make a note of every episode we have. Not been given a sheet or anything like that

[limpid hornet]

I wasn't even told that. I mean I should've thought

[oblique wing]

what wasn’t mentioned?

[oblique wing]

i’ve never heard of a bp test? what’s it called?

[limpid hornet]

That there was a symptom journal and a button I was supposed to pay when feeling symptoms but this was never told to me

[mellow sedge]

Dunno just tracking my blood pressure when I experience pre-syncope after standing up.

Ky ↩️

[Reply to:](#1143691019242717308 message) i’ve never heard of a bp test? what’s it called?

[oblique wing]

you weren’t told about the button or symptom journal? im confused,

[oblique wing]

huh weird! that’s cool tho

[limpid hornet]

Neither.

[limpid hornet]

I wasn't told about either

[oblique wing]

oh that’s so odd

[limpid hornet]

Yeah. And frustrating

[quaint narwhal]

I wish I could avoid stairs entirely. They are my enemy. Grrrrrrrrr.

I’m laying on my mat. And gosh my head hurts.

I’m even laying with my head slightly elevated. But could be the heat too (high of 30°C today ish, maybe up to 32°C I think it was)

[muted imp]

Had a TTT test yesterday, I’m kinda waiting on results/diagnosis as in I have questions about my dysautonomia diagnosis because dysautonomia can literally mean tons of things. My blood pressure remained stable, which is what I expected. I’m hopefully gonna get into physical therapy to help with physical activity because of how severely de-conditioned I am. I also have to increase my propranolol usage and maybe my dose. Seeing a nutritionist tomorrow, I think it’s for adding salt to my diet even though I already do that, maybe a diet? I really don’t know. I have a pretty good diet (diet as in what I eat, not what I “restrict” because besides dairy and certain foods that upset my stomach, I don’t), not a perfect diet by any means, but good for me. I am overweight, but that’s more antidepressant side effects and not being able to exercise for basically 2 years.

[limpid hornet]

Well I was planning on doing stuff today but my heart said nope. You are going to get lightheaded going up stairs

[quaint narwhal]

Isn’t that just how it goes most days. 💀😂🥲

[limpid hornet]

So I am filling out the heart monitor paperwork as best as I can.

[muted imp]

Ok, so I officially have POTS. At least there is a name to it!

I am starting physical therapy at some point, need to find someone who can do that.

I also saw a dietitian today, and she told be that my diet isn’t affecting my pots, which is good.

But I’m still scared about physical therapy not working for me, and not being able to find one locally. I also wonder how I am going to survive my last 2 years of high school, when my pots has been getting worse. I do have accommodations at school, and whenever I start working I’ll have job accommodations as well, but I’ll still have really bad struggles with this stuff. (I really need to just journal this out)

[grim ermine]

Pots ganggg

[oblique wing]

as someone with pots and pt didn’t help: give it your best shot. i have friends who benefit massively from it and friends who don’t. i hope you benefit because i know the difference can actually be crazy 🫶🏻 congrats on the diagnosis!

[muted imp]

Thanks!

[quaint narwhal]

I’m jelly y’all are getting your diagnosis’s. Lol. Mind you things have been… chaotic in my life.

[oblique wing]

took me 2 years (probably more i’ve had symptoms for 10 lol) you’ll get there!!

[quaint narwhal]

Symptoms all my life but got worse about Grade 7/8.

Yeah I’ve been on a diagnosis path for maybe a year now (October)

[oblique wing]

hopefully you get your answers soon!

[quaint narwhal]

Thank you! September’s the brain CT so we’ll see

Hopefully soon after he’ll diagnose me with OH or something

[quaint narwhal]

My body feels like it’s covered in a 5-10lbs weighted blanket.
Fatigue has been hitting hard lately and I haven’t been doing anything useful /nav

[mellow sedge]

Does anyone know what would cause a bp monitor to display an error?

Context: felt like I was gonna pass out after standing up so tried to get a reading for the doctor

[rustic kestrel]

Maybe not worn correctly, did you put in on your arm tight enough and in the right direction?

[mellow sedge]

Yes. I hadn’t taken it off since doing a reading when I was sitting and had checked it was still tight enough

[rustic kestrel]

Hmmm

Is it one of those ones where you plug the cable in? Maybe it came loose?

Those are the only issues I've ever had with them. Outside of those checks I would assume there's a fault with it

[mellow sedge]

Alright

[muted imp]

I really hope you get answers and that someone listens to you. Orthostatic intolerance/dysautonomia is way too common to be this difficult for doctors to understand and diagnose. It sucks that you have been going through this for so long without doctors helping that much. Your experiences and emotions are valid, and I hear you.

[quaint narwhal]

🥺😭 That helps, thank you. I really appreciate that. Means a lot.

[junior creek]

is there anybody else that feels very weak in their arms and legs all the time?? I'm not sure if it's part of pots or its something else, but i feel like there is no strength in my arms and legs a lot of the time and as if my legs are to weak to even hold my weight. this also just hurts (which gets even worse when i try to use the arm/leg that hurts) so idk what it is and if there's something i can do about it

[crisp cypress]

i do, in both my arms and legs (i've never seen anyone else have a similar thing)! but i don't have any diagnoses at the moment cause doctors have zero idea what's causing it (i have suspected pots but definitely don't have EDS). i can stand and stuff but it feels like my legs are going to collapse even though they aren't

[ocean bear]

GG @crisp cypress, you just advanced to level 1!

[junior creek]

okay wow that kind of describes exactly what i'm feeling! thanks for reacting, i was starting to feel like i was crazy for feeling this (don't have understanding parents and don't have other physically disabled/chronically ill ppl around me)

[quaint narwhal]

Always. It’s really hard currently for us.

[quaint narwhal]

This! I go through it too
Constant feeling like my legs will collapse. I always thought it was fatigue and maybe it is idk.

Once I get a place and a steady good income I’ll prob get medical aids that’ll help me.

So far compression socks and my cane don’t help entirely with my leg weakness. Though helps the dizziness a bit.
Though it hasn’t been helping recently.

[crisp cypress]

no don't worry, i've been going insane trying to find other people that have dealt with something like this! (i don't have tics or seizures so doctors are very confused)

[crisp cypress]

i haven't tried compression socks but i have a cane and it helps a little bit. i probably need a more substantial mobility aid but it took a lot of convincing already to get my parents on board with me using a cane

[oblique wing]

weakness is a symptom of pots

[quaint narwhal]

Cool! I highly recommend Copper88 compression socks. They help lots. Though they don’t squish my feet enough. TvT

Agh I’ve got one hell of a blood pressure headache. The air pressure in this building makes my blood pressure issues worse. -Killian

[limpid hornet]

That explains Soo much

[oblique wing]

hah yeah in pretty sure that’s why this thread was started lol so i’m repeating myself bc no body talks about that symptom for some reason

[quaint narwhal]

Yep

It’s barely talked about

[crisp cypress]

Ooh thank you, that’s helpful! Opens a whole other can of worms though for me hehe, cause I’ve had weakness back when my heart rate wasn’t struggling this bad

[limpid hornet]

I am actively struggling to get around at work today. The combination of dizziness and being very weak is knocking me out today

Thank God for rolling office chairs

[junior creek]

oohh thx

[muted imp]

Today is a really bad fatigue day

[limpid hornet]

Anybody else have the anxiety during really bad episodes that something is more wrong? But you are pretty sure it's ok and you just need to rest. But also your heart is racing and it's scary.

[muted imp]

Sometimes, mostly if I’m in pain.

[rustic kestrel]

Medication helped massively with this for me

[limpid hornet]

How exactly. If you don't mind explaining

[rustic kestrel]

(Disclaimer I have diagnosed IST not POTS but they are very similar). I used to get episodes where I would get really strong palpitations and my heart rate would sit very high for a long time e.g. 150 bpm for 30 hours straight. These episodes caused massive anxiety and I had to go to hospital for this a few times and they would send me home after it settled without meds. After seeing the cardiologist and doing all the investigations he ruled out that nothing more serious was wrong, which gave me massive comfort whenever I had bad palpitations again. Since I got on the right dosage of meds (I take Ivabradine, which is also prescribed for POTS), I havent had an episode as bad as that, and the physical anxiety I felt during any milder kind of "episode" was a lot lower. I think because POTS/IST and anxiety/panic symptoms overlap heavily they really propel each other - your heart rate goes up because of your condition, you feel it because it's fast, and then you feel anxious, and then it goes even faster etc.

So I guess the proper answer is getting checked fully by a cardiologist in combination with starting meds 😅

[limpid hornet]

Thank you for explaining. I have had one cardiologist appointment and I am wating for a second.

[rustic kestrel]

No worries and good luck! Hope your cardiologist is nice. Mine is also an electrophysiologist who I believe is more specialist in these kinds of problems, so if you have any issues I recommend seeing one of those if you can

[limpid hornet]

Today is a I am in too much pain to get up day

I get dizzy and when I sit up. And plus sometimes I only use one crutch and sometimes I don't use any so one of my crutches is in my car.

Absolutely no way I am walking without them right now

My legs feel super weak and hurt.

Well they also think I might have arthritis so thats probably a factor. But either way. I am not walking without support right now

But there is no one else home. So I guess I am crawling. To get my crutch. And some ice packs. And water.

[queen lake]

hello! I am very happy as i have finally got compression socks! my symptoms have been really bad lately, I have been very tired and in general struggling with pain and dizzy-ness, (i'm not diagnosed with pots, but I am in the process of waiting to be seen by a physiotherapist for everything! 🙂 and my mum has bought me some compression socks which have arrived today! 🙂 now I just have to wait till my mum gets home to open them 🙂 I know they won't fix everything, but i'm hopeful they should help a bit

[rustic kestrel]

I might have misunderstood your message, but you should see a cardiologist for POTS rather than a physio, they won't be able to diagnose it

[ocean bear]

GG @rustic kestrel, you just advanced to level 5!

[quaint narwhal]

Awesome!

[quaint narwhal]

They can help with the diagnosis process though afaik

[steady ember]

I've just did laser tag in the heat and who thought that was a good idea 😭😭 I'm running on 2 hours of sleep with limited spoons PAHAHA

[limpid hornet]

Was it worth it? Sometimes I think it's worth it to overuse spoons if you have the next couple days off to recover. Like if it's a ith family or a friend that lives far away.

[limpid hornet]

Yesterday sucked Soo bad

I got to the point I couldn't walk on my own and couldn't drive cause my heart rate was sitting at 130. It hurt and my legs were really weak and in general I did not feel good.

I went to the chiropractor and had breakfast and I am getting to that point again. I am not there yet. But it's getting bad. So I decided the rest of today is going to be dedicated to rest. I have a new TV show to binge watch. And I got myself a large water bottle in my room and puppies to cuddle.

So I should be good.

[limpid hornet]

I got heart monitor results back.

[rustic kestrel]

Did you get any answers?

[limpid hornet]

Yes. My heart is adding extra beats. Messing up the rhythm

It's also just working really really hard for no reason.

[rustic kestrel]

Did they give a diagnosis or are they doing more tests?

[limpid hornet]

More tests. They don't know why. It's doing that. They said they might put me on beta blockers but it's still a debate because my blood pressure is normal and and it also lowers blood pressure.

[rustic kestrel]

Hopefully they'll get a better idea of what's going on with some more testing. The beta blockers thing is always tricky, having low blood pressure and getting dizzy probably won't make you feel more comfortable. Hope you get more answers ASAP!

[obsidian adder]

I fainted three times and I am so tired. We have no idea what’s going on but a couple months ago a doctor brought up pots but idk what the testing is like or how to get tested. It’s more than just fainting but it’s rly taking over :(

[rustic kestrel]

Sorry to hear you're struggling. You would need to see a cardiologist to get diagnosed. Tests could include blood tests, ECG, 24 heart monitoring, echocardiogram and a tilt table test

[limpid hornet]

They are hoping it will lower my heart rate and stop it from spiking. I have been essentially bed bound the last couple days. I have to choose if I want to be downstairs or upstairs because that will be what I do that day. The only activity.

And it has been suggested that I get a wheelchair. But I can't afford it even with insurance.

So I just wait out the bad periods.

In the mean time I can barely get around the house and definitely can't go outside or go anywhere. Cause I need to take breaks to lay down.

That's incredibly frustrating. That I can barely get around the house at all on my own. How do people not let that drive you insane.

[obsidian adder]

Thanks :) that sounds kinda scary tho ngl 😭

[plain steppe]

maybe its becuase you arent using your legs so much that your body doesnt have to pump blood around that much

i have compressions socks too but my mum always steals them cuz she has a condition which is similar to pots and i cant remember what it is called and she doesnt want to buy some cuz she has tried some and its not the same fit as mine and it didnt really help her the ones she bought but mine do

[limpid hornet]

Good idea

[rustic kestrel]

NAD but I wonder if ivabradine is an option for you? It isn't a beta blocker, and it lowers heart rate without affecting blood pressure. Maybe worth mentioning?

[rustic kestrel]

Chronic illness really is the worst, I relate and I'm so sorry. This is only the beginning though, once you find a treatment strategy that works and are able to get more support in the future, I'm sure things will get better ❤️

[rustic kestrel]

It can be! I've been through most of the tests so if you have any questions or worries feel free to ask, I'll answer anything :)

[obsidian adder]

Thank you so much <3

[obsidian adder]

I do have a few questions so I hope it’s not too much to ask 🫶🏻

How long do the tests usually take or how long did it take for you?
Do you get to choose when you have the tests done?
Are you unable to do any certain things during some tests like sport or something? (I’m a very sporty person lol.)

[rustic kestrel]

(Note: I'm based in the UK and had some tests done through the NHS and some privately.) Q1 - The tests are generally fast and painless. Blood tests and echocardiograms can be a bit uncomfortable, but the discomfort is short lived. ECGs and heart monitoring you can't even feel anything, you just have some sticky pads stuck to you. Chest xrays, CTs etc are also painless and fast.
Q2 - I was able to book in for when was convenient for me. If you get overwhelmed by the medical process it's good to take it slow. Of course if they find anything concerning during testing they might increase the urgency though.
Q3 - I guess this only applies to the 24 hour+ heart monitoring. They want to get a picture of how your heart functions in your regular day to day, so you should do what you would on an average day and keep a symptom diary (write down at what time you felt symptoms, what they were, how long they lasted, what activity you were doing) so they can match the monitor results to what would be expected for that activity

When diagnosing something like POTS you work on a system of trying to exclude a lot of other causes for the symptoms first, so it's a very step by step thing. For example, you could do just blood tests and find an answer and not need to do all the other tests.

[limpid hornet]

Thank you. I will ask.

[limpid hornet]

Yeah. I did some basic research. It wouldn't work because I have both pac's and pvc's. It can either make it a lot worse or a lot better. And they don't nessesarily know why it does either. So I would need to be monitored the first couple doses. Which just makes things more complicated. I am still going to ask but I don't know

Honestly the more I read, it scares me because I am finding studies that having both irregular heart beats is an indicator of something not good.

So I am going to stop.

[obsidian adder]

Thank you so much. This is really helping me. It’s rly kind of you to go out of your way to answer these things for me. Thank you so much. It means a lot

[rustic kestrel]

That's fair. Looking stuff up online is such a double edged sword isn't it. Nice to be informed, but also scary most of the time :/ I hope they're following up with you quite quickly?

Also wanted to say even if what you have isn't POTS/IST and it's not something i know much about, I'm happy to keep listening to your journey and try and offer support if that would help

[limpid hornet]

Yeah. I was told it was normal mostly. They said that it was super high but they wanted me to live with it. It wasn't enough of irregular heartbeats to be something they want to do anything about. Like no. No. I don't want to be told to just deal. I can't do that. So I pushed and they said no to the beta blockers because of blood pressure. Which I wasn't surprised about.

[rustic kestrel]

No worries at all! If you have any more questions ping me anytime :)

[obsidian adder]

Thank uuu

[rustic kestrel]

They shouldn't turn you away for a condition that is impacting you so heavily. I don't know if you said before and I missed it, are you using the NHS? I know they can be quite dismissive of this stuff

Oh nvm I just noticed your roles 😅

[limpid hornet]

Yep.

I am very frustrated right now.

I don't want to be told that it's nothing. It obviously isn't.

[rustic kestrel]

So they didn't give you any treatment options, just recommended a wheelchair?

[limpid hornet]

Yep

[rustic kestrel]

That's actually insane tbh

[limpid hornet]

They said it shouldn't be that much of an issue.

[rustic kestrel]

Genuinely don't know what to say. Surely they must know it isn't healthy for your heart to work so hard. Is there any way of getting a second opinion?

[limpid hornet]

It's definitely super high and problematic but I should recover and be ok. But that doesn't happen. It exhausts me. So I need time to recover from it. Granted right now I am in a very bad flare up. I have days where I am basically ok most of the time.

Not unless I want to pay out of pocket.

But they will give a prescription for a wheelchair.

But I don't want that. I want to deal with the problem

I'm sorry. It's just frustrating to hear them acknowledge that something is not right but they won't do anything

[rustic kestrel]

I don't understand why they aren't listening to what you're telling them. There's a lot of heart medication options, it seems stupid they won't experiment a bit to make you more comfortable. Maybe you could push for like a 72 hour monitor so you can prove that your heart rate doesn't settle as quickly as they're claiming?

Don't be sorry! This stuff is infuriating, it truly is. It's only right to be angry about this

[limpid hornet]

They said a lot of the heart medication will also mess with my blood pressure. And they don't want to risk that.

Which I get but can we try

I don't know what I will do

[rustic kestrel]

It should be your right as the patient to make that choice. Sure the beta blockers might give you side effects, but maybe those side effects are better than your current symptoms. As long as they monitor you I really don't see why they wouldn't try

They seem particularly stubborn by the sounds of it

[limpid hornet]

That's a good point. Honestly in the appointment I just got frustrated.

[rustic kestrel]

Fully understandable though

[limpid hornet]

I will send a message to ask.

[rustic kestrel]

They could also try like a very low dose for example, see how your body reacts to it. Everyone is different on meds after all

[ocean bear]

GG @rustic kestrel, you just advanced to level 6!

[half stratus]

I’m on a beta blocker that doesn’t affect blood pressure!

It’s called ||ivabradine||

[rustic kestrel]

Yeah 24 hour monitoring can be a bit deceptive.. Good for picking up some abnormalities but if like you and me there are good and bad days, it might not give the most accurate picture of your situation

Ivabradine isn't a beta blocker ^^

[limpid hornet]

That was ruled out because it might make the irregular heart beats worse. Or better but it swings hard either way.

[half stratus]

Ah I see, it’s worked amazing for me and I’m on the low dose

[half stratus]

Ah my bad I thought it was

[rustic kestrel]

It's an amazing drug though, I'm on it too :)

[half stratus]

Yeah I’m supposed to be starting ||amoxetine|| but I’m worried it might make my pots worse

It’s for my adhd

[limpid hornet]

I will probably ask for a trial of the beta blockers. Maybe even a heart monitor on top of that to make sure it's not getting worse. If it is, stop definitely. But it could help. And I need something too.

[rustic kestrel]

Again maybe worth a try though? They can do really long home heart monitoring, up to 2 weeks afaik, and can start you on a low dose

I guess just make it as clear as you can how life limiting your condition is, and that you're happy to do a bit of trial and error to improve your health

[half stratus]

I was like that aswell I was like I need something to keep my hr down it’s suckssssssssss I said I would try anything

[rustic kestrel]

Is that an SNRI? What are the concerns with making the POTS worse? I was going to start an SNRI too and now I'm curious

[half stratus]

I think it was with the HR, like the irregular hr

[limpid hornet]

Yeah. I need to start pushing them. I should have before. I just got frustrated in the appointment.

[rustic kestrel]

Idk if this is an option for you, but I try to always bring someone to my appointments with me to help speak up when the doctors get shitty. It's helped me a few times so I can only recommend it

[rustic kestrel]

Ahh I see, ty for the info!

[limpid hornet]

Yeah. I normally do because I go non verbal but this was a virtual so I didn't.

[rustic kestrel]

Ah okay, fair enough

Well best of luck, hope that they listen to you

[limpid hornet]

Yeah. I don't have the energy to fight it today. I will send a message then leave it for tomorrow

I am not feeling too bad today. I think I am coming out of the really bad flare up. Finally.

Not constantly dizzy.

I shouldn't push it tho. I should just try to relax.

[rustic kestrel]

Glad to hear you're coming out of your flare up. It's good to take it as easy as you can, should help it go away quicker

[limpid hornet]

Yeah. Exactly. But you get that feeling, hey I can do something, I want to do everything now. But also know if you do it's going to make it worse.

[rustic kestrel]

Yeahhh, I'm not good at following my own advice 😅

[limpid hornet]

I don't think a lot of people are. Lol

[muted imp]

Beta blocker taker here, I was originally on it for anxiety, but it does help with my tachycardia related to pots. I am on propranolol 20mg. 20mg is a low enough dose for me where it doesn’t affect my blood pressure, but helps with my heart rate. I never had low blood pressure in the first place, even though I know it’s common among potsies. I have had a good experience with propranolol, but I know beta blockers can have unpleasant side effects, depending on the person, dose, and specific medications. The doctor will typically prescribe a low dose, and can help you make adjustments as needed for you. It’s not for everyone, but it might be worth a try. I am not a doctor, or your doctor for that matter, and I am not in your body, so don’t take this as medical advice because because what works for me may not work for you. 🥄♥️

[midnight timber]

Quick question, can u have POTS without high/low ||blood pressure||?

[limpid hornet]

I set another appointment for Friday.

To get some solutions

[bleak niche]

from what I understand that's actually one of the criteria that ur blood pressure isn't the reason for the tachycardia

[rustic kestrel]

Good luck!

[midnight timber]

That honestly makes me feel much better (y'know impostor syndrome), thanks!

[oblique wing]

yes

[muted imp]

I hope it goes well

[ocean bear]

GG @muted imp, you just advanced to level 4!

[limpid hornet]

I have my appointmant in an hour

I got this.

[limpid hornet]

ok, they said I should do a tilt table test

so they actually are thinking pots

[hot kelp]

I'm backkkk

Am I cooked chat?

Is that normal? For reference I did that a couple minutes ago and at 109 rn and still going up and then down a bit then up

112 rn

At 98 rn after I sat like 3 minutes ago?? Can still hear my heart

Back to 102

[round imp]

So a few months ago, I had what I thought was vertigo but it felt different from when I had it last time so I went to the doctors. While there, I had an “episode”. I’m not sure of the finer details because I don’t actually remember any of the appointment. My doctor said that I had become unresponsive but didn’t fall unconscious - so he thought I had a seizure.

Had an ambulance called, went to hospital, all my tests came back clear for everything they were testing (including a stroke)

I was given meds to take and they really helped to the point where I started to wean myself off of them because they’re very strong and addictive and I don’t want to be addicted to them.

Now I’m back to being constantly dizzy but what I’ve noticed is at the worst of my dizziness, I can feel my heart racing and I’m really unsteady on my feet. I’ve never actually fainted but I’ve dissociated hard enough that I might as well have. I also have absolutely no energy to do anything.

Am I right in suspecting that I might actually have something like POTS?? Or is this a bad reaction from trying to wean myself off my meds??

[hot kelp]

Could be meds actually but I have no idea cause I haven't really suspected POTS fr until now

I'm also a bit dizzy after getting back up and feel really tired and can still hear my heart racing

Gonna lay down and close my eyes

They're low key closing

[rustic kestrel]

hard to say, did you have any other symptoms like feeling dizzy etc?

[hot kelp]

Not this time but other times yes and then see static and lose vision for a second but usually walk it off but lots of fast heart heart like even rn when I got up again and I just feel light and a bit tired

Heat does make it worse

Stairs are horrible

And GI issues

Hard to breathe sometimes

Randomly even while laying down

Stuff like that

[rustic kestrel]

it could be a lot of things, anaemia for example can cause symptoms like that. what is your normal resting heart rate, do you feel palpitations regularly?

[hot kelp]

Palpitations a lot dk resting heart rate but if I had to go from times I've had a watch on that shows heart rate usually around 80 to 90 but can go lower

And as for anaemia dk symptoms but pretty sure I don't have that

[rustic kestrel]

well the symptoms you mentioned do align with anemia among other potential things, ulitmately you would need to see a doctor and have tests done. checking for anaemia is one of the first things they would look for anyway

[hot kelp]

What is anaemia ?

[rustic kestrel]

https://www.nhs.uk/conditions/iron-deficiency-anaemia/

[rustic kestrel]

again hard to say. do you know what tests were done and what was ruled out? is your dizziness related to standing or is it random?

why can't I post links to the POTS diagnostic criteria

?

[hot kelp]

I'm sorry I don't know

Nothing was

Just started questioning

Im sorry :(

[rustic kestrel]

wdym?

[hot kelp]

POTS

Sorry m out of it

Tired

Did research before at one point but didn't suspect I did until I saw some videos that I related to a lot. I'm not saying I have it just research idk m sorry

[rustic kestrel]

don't be sorry, it's all okay! I just wanted to mention the possibility of other similar conditions you might not have heard of since they all have overlapping symptoms

when you go to the doctor to get tested for POTS, they test for a bunch of things, including this. I was trying to link to a page that talked about the symptoms and diagnostic process but the link was deleted. I'm not saying you don't have POTS, I'm not qualified for that :D

[hot kelp]

Ty

[round imp]

It’s worse when I’m standing. I also get really bad headaches nearly all the time too.

In fact as of recently I only feel a little better when lying down

[rustic kestrel]

The POTS criteria mentions how symptoms can happen when standing and get better when lying down, how much or how quickly they improve could be very individual though. Being dizzy and having headaches constantly sounds very uncomfortable though, I do recommend you see your doctor and start some testing

[limpid hornet]

Anybody else get I don't know how to describe it, but like foggy. It's hard to focus. And think.

[hot kelp]

Yes but it might be the dissociative disorder lol

[limpid hornet]

same tho. I just thought it might be related because it is worse on days I feel worse

also I found an intersting article

[oblique wing]

it’s a permission you don’t have

[oblique wing]

brain fog, common pots symptom

[humble glacier]

That’s called brain fog! I get it too

It makes it really hard to read and stuff, gets a lot worse during flare ups for me

[limpid hornet]

Umm. So I did the standing test at home. My blood pressure and heart rate rise significantly

My heart rate goes from 65 to 100. And my blood pressure goes from 120 to 137

Well I didn't make it 10 mins standing

I made it like 2 mins

[muted imp]

I know when I did the standing test in a medical setting, both my pulse and blood pressure went up as well. I don’t think my blood pressure had that big of a jump.

But my heart rate set off the alarm because it was over 120, fun times

[limpid hornet]

What does it mean when it's both

Ok, let me rephrase, did other people's blood pressure also shoot up? And how was that reacted too

I am not looking for an answer but for other peoples experiences

[limpid hornet]

When you did the test did they let you sit down if it got high enough that you didn't feel good and they had gotten enough information from the test? Like is it ok if I don't make it 10 mins?

[limpid hornet]

Ok, I managed to stay standing. It doesn't stay as high. It went back down to normal after 5 mins.

Blood pressure.

Heart rate stays at 100ish and slowly rises

[muted imp]

I was symptomatic, and I told them, but I honestly just wanted to get the thing done and over with.

I was able to tolerate it, and it wasn’t a crazy jump in my blood pressure

Sometimes I stand up and it’s full blown “imma bout to pass out, I have to get on the floor asap.” Other times, it’s “I was definitely having a pre syncope episode where my vision was going, but I wasn’t self aware enough to get on the floor because I got used to pre syncope” That’s something I have to unlearn physically walking during those episodes, because it might end badly

[hot kelp]

Am I the only one that has very clammy hands and feet?? Like these things be sweating no matter if its hot, cold or room temperature. My phone is legit slipping out of my hand rn

[oblique wing]

sweating is common with dysautonomia

[hot kelp]

Oh?

[silent mesa]

Hey

[limpid hornet]

Hi

[silent mesa]

Ok so did anyone else have to go to GI cause there nauseous a lot and then feel like there gonna ||vomit|| but don’t it’s been awful recently and kinda making it so I can’t eat cause it makes me so nauseous when I eat

[hot kelp]

Yea but hasn't been horribly bad last couple days but yesterday I felt sick again but not as bad and I have to eat in a bit so we'll see

[silent mesa]

I have had two light things cause I can’t have another nausea wave today my body can’t handle one I just had some saltines to put something in my body well see what happens

[mental depot]

i found my people

[silent mesa]

Hey

[mental depot]

i'm not diagnosed with POTS but i am nearly 100% certain i have it

[silent mesa]

Welcome

Ok I have a question does anyone have a favorite book for when there to sick to get out of bed

[limpid hornet]

The last unicorn

[silent mesa]

I have a Manuel for my meds now

[hot kelp]

Ever just. . . get up and your head throbs and you have to stop to question all your life choices for a moment (in other words wait to regain vision and for the throbbing to stop)

[silent mesa]

YES OMG it’s a 50/50 if my legs give out though

[hot kelp]

My legs luckily never give out

I can literally feel my heart beating really fast though

[silent mesa]

My legs give out and I go to the floor not willingly

[hot kelp]

Aww :(

I'm back again

I for some reason decided to dance and my heart is shaking my whole body and my head hurts. Is that a bad thing or is it just me dancing too hard and this is normal?

I layed down btw

Kinda wanna keep dancing. Imma do that and hope for the best cause I don't feel like my body will give out just got a bit dizzy and head still hurts

[silent mesa]

That happens to me to

Sorry that I didn’t respond sooner I was taking my meds

[hot kelp]

It's okay!

This has me seriously about to consider POTS

Idk though

[hot kelp]

Have no energy actually. Having to lean on my bed to not feel like I'm falling. Feel a bit light and brain is done for can't even think proper

But I feel fine otherwise sooo

[silent mesa]

Yep

[hot kelp]

Welp

Bad idea

On the floor with legs up and extremely tired

Heart still high

How fun

Best part, when I got off the bed to get to the floor where I can put my legs up, legs immediately gave out and I feel

[silent mesa]

YEP

[hot kelp]

😭

Research timeee

Also I made it back to my bed and my head still hurtsss

[silent mesa]

I woke up ||nauseous||again 😭😭

[hot kelp]

Woke up in the middle of the night and now I have a doctors appointment scheduled cause my heart hates me or something (yes it was that bad)

[silent mesa]

That’s me with ||nausea||

[hot kelp]

Tw: for emetaphobia

I meant to say woke up at 1 am I excruciating pain and almost ||threw up||. Now I have to see the doctor cause heart still high af

[silent mesa]

Thanks for the TW

[ionic pagoda]

could you please do the same /nm /gq
please censor ||nausea|| id really appreciate that /nm

[hot kelp]

Yw

Server I own we practice censoring stuff like that so m just used to it and it's just common courtesy and a nice thing to do

[hot kelp]

Also I'll keep this in mind too

[ionic pagoda]

thank you very much :]

[hot kelp]

Ofc!

[limpid hornet]

I was at the physical therapist today and I set off the heart rate alarm doing the axam

exam

lol

[hot kelp]

Damn

[hot kelp]

Bent down and went from like 96 (Ik I was 90+) to 123 immediately lol. This is fun. I'm counting on it being low iron though cause POTS isn't something that is nice to deal with from what I've seen and heard

[prisma sluice]

Hi. I had yesterday an appointment at my GP. And he refused to refer me to a cardiologist. And he didn't took me seriously. Does anyone know what to do?

[ionic pagoda]

do you already know you have anemia or do you need to get it checked?
if you do, its pretty easy! (unless you're afraid of ||needles||)
you only need to get a bit of ||blood drawn||, theyll measure your iron levels and theres a set scale so you can compare your results to the scale and you'll know if you're anemic or not :]

(i am anemic)

treatment options are : solid medication, liquid medication, and iron injections (these take more time and are usually done at the ||hospital||)
people let me know if you need any of this censored!

[muted imp]

I know that you can try to get a second opinion, I also know that you can self refer (in the US, insurance may not cover it, I don’t know how things like that work in where you live)

[bleak niche]

that depends a lot on the country

[hot kelp]

Have to get it checked. I suspect it might be low iron or something like that. I really am just here and sharing cause if the other symptoms I have and similar experiences but I should have an appointment idk when that my mom set up so hopefully I can figure out what's up there

[ionic pagoda]

okay! then if you're ok with getting your ||blood drawn||, its gonna be really easy to figure out :]

[hot kelp]

I am! So yea just waiting for that

[prisma sluice]

Ok thanks.
(I'm from Germany so I guess its covered but it also can be depending on the Health insurance you're at ig)

[prisma sluice]

Ok

[limpid hornet]

If I sit up right now I get really lightheaded. And my head hurts.

I am frustrated cause I was in the middle of doing something. And my body said,no

[silent mesa]

My heart rate today has been crazy

[muted imp]

That sucks, I hate it when that happens

[sinful monolith]

im so confused i think there's a possibility i have pots as i check almost all of the symptoms but it may be caused by something else

[silent mesa]

I need to do stuff but I can’t stand without almost passing out

[limpid hornet]

I get that

Can you roll around in an office chair

I have done that, the dishes in an office chair.

[silent mesa]

It was picking up big stuff and I ended up doing that and going out and getting clothes for back to school I am now laying on my bed with my cat

[limpid hornet]

Kitty!

[limpid hornet]

Anyone else super miserable? It's incredibly hot and oh my God I can barely stand.

[silent mesa]

Omg yes

It’s been awful today

[quaint narwhal]

Yep! Been exhausted more than usual. But it’s a lot of factors tying into one another.

[silent mesa]

I need water but I don’t wanna get up

[limpid hornet]

Oh my God, I just tried stairs. Haha. That was a bad idea.

[limpid hornet]

Relatable

I am laying on the stairs landing.

[silent mesa]

I have to get up stairs to get to my room 😭

[limpid hornet]

Oof

[silent mesa]

And I am usually coming from downstairs and have to climb like 24 stairs it’s a lot

[limpid hornet]

I can make I halfway the stairs and nope. I was going to pass out.

My puppy is confused and concerned. He's like why are you laying on the landing

[silent mesa]

I just struggle through it and then my watch yells at me and I lay in my bed and or the floor depends what I get to first

[limpid hornet]

Yep. Relatable.

[quaint narwhal]

Pffft I walk up too many stairs per day. I know the pain. Used to struggle barely able to do a thing. Lemme say compression socks helped but stairs and elevation changes still affected me.

So I know the pain. Even with my cane, my legs want to give out and the nausea kicks in.

I’m sorry that stairs are so hard for you too.

[limpid hornet]

Yes, the nausea. I don't hear people talk about that a lot. I thought I was crazy

Also anyone else have more trouble when they need to use crutches for non weight bearing.

I sprained my foot. Not supposed to walk on it ATM.

[muted imp]

I have had to use crutches for a broken and sprained ankle (did both at the same time, new achievement), and I had a hard time with them because the palms of my hands would get blisters, and my arms would get tired

[muted imp]

I also get the nausea

[quaint narwhal]

I’m hoping to get crutches to help me move around easier. It’s just not currently able to. Financially, space wise and with what I carry daily.

[limpid hornet]

Backpacks are your friend

[junior creek]

any smartwatch reccomendations with a good heart monitor? my physical therapist just told me i need one and my parents are immediately thinking about the cheapest ones on the market but i feel like the heart monitor would be bad?? idk help

also how do i convince my school i need one? they banned smartwatches so you can only wear them with a good medical reason but i feel like they will say i don't need it during school hours

[bleak niche]

smart watches aren't great at monitoring heart rate in general and especially if you get a cheaper one the quality will go down

if you want something thats more precise get something like a bluetooth hr monitor

[junior creek]

those are the things u wear around ur chest right?

[bleak niche]

if you want something that's actually good look at a polar h10

[bleak niche]

yess most of them at least

[junior creek]

but can you like check ur hr without your phone wearing those?

[bleak niche]

depends

some can link up to a watch too and since it's Bluetooth basically any device that has Bluetooth can (technically) read them

[junior creek]

cause i need to get in a hr range when biking and yea dutch phone on bike laws

[junior creek]

oohhh

[bleak niche]

that doesn't change anything with a watch tho

because you still have to look at the road

[junior creek]

yea but quickly looking over to a watch is legal right?

or not

[bleak niche]

but if it's connected to your phone (which can also be in ur pocket or backpack) it'll just continuously monitor and log it so you can look back

[bleak niche]

yeah kinda but also just a number won't say anything

and a watch is okay to get an idea or an average hr throughout the day but if you want to actually know the real numbers you need something that uses an ecg sensor (like the polar one) instead of one that just uses light to measure (most smart watches)

[junior creek]

okayyy

[ocean bear]

GG @junior creek, you just advanced to level 4!

[bleak niche]

smart watches are nice I also have one and it's fun to see some measurements but they're not the most accurate so especially if you want to use it for something medical and you're looking to buy something specifically for that just get something that does one thing and does it good

because yes cheap smart watches will save money on those sensors

[junior creek]

yea my physical therapist did say smartwatches are less accurate than the chest or the finger things but mainly cause i'll have to wear it to school those will be very inconvenient

throughout the day it will be just to see what happens and if i can find out what would maybe make it go up a lot and when cycling home i have to get it up between 150 and 170 for like condition training things

but i just wore my dads smartwatch for like a minute and was already having sensory issues so idk if i can get used to that😭

[bleak niche]

why do you think a chest band would be inconvenient?

[junior creek]

im scared of the sensory issues that might come with them

also feel like it would get really sweaty and it'l show through my clothes

but maybe im just overthinking

[bleak niche]

polar also makes ones that go around your arm which do use optical sensors but are still way more accurate than smart watches

[junior creek]

that does sound a lot better

[bleak niche]

especially if you want to monitor your hr for medical reasons I really recommend going for a sensor that's made for that instead of a smartwatch because you can be sure that the money you pay for the product is just for the sensor instead of them making a good looking watch with a lot of sensors which are all okayish but not great

[bleak niche]

look at the polar verity sense

[junior creek]

i'll look more into actual hr monitors then

[junior creek]

yea thats the one i found on google

[bleak niche]

from my research (read research as oh my brain liked this so I just googled and read a lot of reviews and like medical reviews 😭) this is the best you can get before going to a chest strap that uses an ecg sensor instead of optical

btw feel free to dm if you have questions in dutch too (or use the dutch chat) because I get that might be easier especially for questions more related to the Netherlands like availability or just rules and stuff lol

[junior creek]

lol i will do that

first need to discuss with my parents though

but they're in a state of complete shock right now cause wdym if your heart does weird things it might be beneficial to measure those things? that is so unexpected and weird

[bleak niche]

also for the school problem just say you need it and if they say no let your parents do the same if they still don't agree (or if they ask for a note from a doctor) just tell them they have to contact a "school doctor" for that because that's the only legal way for them to ask for a note and tbh in most cases they'll just say yes because if they have to contact one that will cost money and time because most schools don't have one so that's too much work for them

[junior creek]

arent school doctor ppl after elementary school just the ggd in the netherlands?

im seeing my coach person tomorrow in music class so maybe i can just ask quickly at the end of my lesson

[bleak niche]

kinda I'm pretty sure it does go through the ggd but it's still way more work for them

and tbh most schools like making problems but don't like actually doing stuff

so like actually contacting them would be too much work over something as simple as a smartwatch

but for a band around your arm that would be way easier anyways

[junior creek]

my school is full of ppl who do like making problems, then say they will do something but dont actually do it so ur just waiting for nothing

[junior creek]

yep

although they are literally banning everything in my school now

like wdym we cant have e-readers?

[bleak niche]

yeah feel that lmao had the same when I was in secondary school

[glad wedge]

or they say ''make a planning''. as if thats the solution for everything

[bleak niche]

but if you do have to wait and they're not taking it seriously just contact the layer above them so if it's a teacher contact their boss and if it's already the highest in the school contact the layer above that (usually a group of schools)

[junior creek]

well my principal is ignorant as fuck and my school isnt connected to a group

but maybe they wont deny my problems idk

[junior creek]

EXACTLY oh you have autism and cant handle us communicating everything the day before? just plan ahead! like what is there to plan ahead if u dont communicate???

this is turning into me just venting abt school though

[bleak niche]

there are always layers above the school

[upper vale]

My heart rate went hugh yesterday, which is normal but it lasted longer hen normal

[silent mesa]

Omg I got ||nausea|| at school and I hated it so much and my watch is dead and I haven’t had time to charge it yet so I couldn’t see my heart rate all day and I had a awful symptom day today

[oblique wing]

when it comes to pots measuring your hr isn’t always that useful because you can be at 130 and have no symptoms but also at 70 you feel awful. your watch or monitor will only be able to tell you what’s happening during the recording but not before so it dosent really help with knowing when you need a break. if you need a break the only reason you’ll really know is if your symptomatic. all in all i think it can be ok to track exertion for exercise and when you may need to take it easy, but it’s probably better to be more introspective on how your body feels than relying on a monitor

saying this as someone who tracks her heart rate through an apple watch. if your pt wants to get an idea of where your range lands day to day then they should pair with a cardiologist to get you a halter monitor for a while that way they can see what sort of meds or treatment you might need with accurate accessible data that they know the variables of

pots is one of those things where a watch can be helpful but it’s vested to just treat symptoms as you feel it as opposed to relying on numbers

[limpid hornet]

@silent mesa this. I was wondering why sometimes it wasn't that high but I still felt short of breath and stuff. Or it will be 85 and I will feel like I am going to pass out.

[oblique wing]

most likely your body trying its best to regulate and it winds up overcompensating to quickly making you feel bad

[limpid hornet]

I can be ok but it's 130 and I am walking around but then it's 90 and I need to lay down. It's odd.

Yeah. True

[silent mesa]

YES

[silent mesa]

Also forgot to add in I have a gastro issue I have chronic ||nausea|| but it some stomach issue I forgot to add that bus yes nausea is a symptom of if I am in like pre syncope

[oblique wing]

i’ve got chronic nausea as well. it gets worse depending on if i’m going to faint or not. ie: little increase, i don’t have to worry; medium increase, should probably sit; large increase, get on the floor im going to faint

[silent mesa]

I don’t pass out from my pots but I still sit down cause I get super shaky and super lightheaded and nauseous

[ocean bear]

GG @silent mesa, you just advanced to level 11!

[oblique wing]

i rarely pass out but i feel like it goes with my point of knowing your body and how it will react is better than simply checking a watch and relying on it

[torpid kernel]

This is actually so validating for me. I also use a watch to track my hr. I’ve noticed times where my hr is low and I’m symptomatic and I’m so confused as to why and then I’ve also noticed times where it’s high and I don’t feel any worse than I usually do. I usually just started to doubt my symptoms and my body and immediately resort to saying “it’s all in my head” or “I’m just crazy”

[bleak niche]

sometimes cheap optic sensors (the ones on most watches) can have problems like this where they show the wrong hr so that could also be a problem

[oblique wing]

yea! i mainly track my hr for exertion reasons as opposed to symptoms. so if i’m having a day where 130 isn’t affecting me, it’s still taking up a lot of energy and i know i need to slow down. my sdit is more for hr alert when it comes to symptoms bc unlike a watch he can sense a drop or spike before it happens

[ocean bear]

GG @oblique wing, you just advanced to level 12!

[bleak niche]

I sometimes noticed that especially if the watch isn't as tight around my wrist it can sometimes report as around half of my actual hr (checked using a hr monitor or just counting with my fingers on my wrist)

[torpid kernel]

I use an older Apple Watch so it could definitely be the issue, I recently just started keeping a pulse ox in my backpack just in case.

[bleak niche]

tbh the age of the watch doesn't really matter

for 99% of the smart watches the hr is just something fun and extra that they have

if you actually want to track it use something like the finger monitors or get a more professional optical monitor or even better an ecg based sensor

[oblique wing]

i keep a pulse ox on me less for hr checks bc i do find my watch pretty accurate (maybe it’s because my skin is translucent and im pale as a ghost) but i have oxygen drops so pulse oxs help with identifying those

[torpid kernel]

That’s great! I’m currently in the process to apply for a service dog, he/she won’t have a heart rate alert but will provide medical response like DPT and elevating my legs.
I don’t pass out but I do have episodes where I tremor really badly and feel out of it.

[bleak niche]

most of the time a watch is accurate enough mine is accurate most of the time too but it's just not a medical device

[oblique wing]

yeah my sdit does elevation and we’re working on dpt! very helpful lol

[torpid kernel]

For sure I love my pulse ox so far it works great and I don’t mind carrying it around because I already carry around a backpack for my heat packs and electrolytes 😂

[oblique wing]

yup! if anyone is concerned for their hr and wants accurate data, talk to a cardiologist about a professional monitor bc a watch isn’t going to cut it

[bleak niche]

yeah exactly

[torpid kernel]

Truth! I had a holter monitor for four weeks my skin HATEDDDD me

[bleak niche]

there are also other ecg or even more professional optical sensors if you do want something to use 24/7

polar has some and I think garmin too

[oblique wing]

i wish they would give me one for like a week lol they’ve only done 48 hr ones and i don’t think it’s enough of a range

[torpid kernel]

Yeah I definitely think it should be longer than 48 hrs, so they could account for bad symptom days too.
The doctor I went to wasn’t great anyways, told me that I have dysautonomia but I’m not in heart failure so he can’t help me 😭

[oblique wing]

i need a new cardio so bad i’ve been telling stan for months and i still haven’t found one 🥲

[bleak niche]

what you could do is use one of the available consumer ecg meters (like polar H10) and just monitor it like that and take those reports it's not the same quality but it's not too expensive and still uses an ECG sensor to measure

[oblique wing]

problem is it wouldn’t count as a medical record so the dr would probably need to do a long one anyways and then be able to test because they can’t give diagnosis without test confirmation

[torpid kernel]

I desperately need a new one too 😭 I recently moved and I’m terrified of going back on the doctor search

[oblique wing]

im already dx w pots so i don’t need one for that but im like pretty sure i have other stuff going on

[bleak niche]

that's true but it could be enough for them to be convinced it's necessary

[oblique wing]

yeah cardio and neuro are best for pots. cardio can dx easier and will be able to treat w beta blockers. neuro bc its a nervous system issue but they can probably only treat with beta blockers if the patient has migraine

[torpid kernel]

Yeah I also have other silly stuff going on. My last doctor said I have IST but I also think I may have POTS. He wasn’t very equip to handle my conditions though I think that’s why he brushed me off. He put me on meds while they do help lower my hr my symptoms are still consistently there, and even on the meds I’ll still have an increase of 30+ bpm which also causes a multitude of symptoms.

[torpid kernel]

Currently on beta blockers I wish there were more treatment options. My cardio told me that it’s hard to treat and no cure and kind of just left me with that

[oblique wing]

it’s because pots is a autonomic nervous system issue. so your on blockers but because that’s only treating the way your heart pumps and not the other systems that are affected by pots, you still feel symptoms. the +30 increase on blockers might honestly be your heart trying to compensate for blood pressure resulting in a spike, your probably more symptomatic when that happens because your on blockers to do your body has to fight harder to level out the way it wants when the medication is preventing that

[oblique wing]

yeah unfortunately it’s shit

[torpid kernel]

That makes soooo much sense! You are making me feel so validated by reading this because I’m just walking around thinking I’m the problem 😭 I meannn my body is the problem but still!

[silent mesa]

Yea I don’t pass out thank goodness but I go into like pre syncope and I have other symptoms to just I don’t pass out and I do rely on my watch as I am writing this I am laying down and my heart rate is at 73 I did actually charge my watch last night

[limpid hornet]

I have only passed out once. It's very very rare for me. I just get where I need to lay down because I feel absolutely horrendous. Dizzy, can't hear or see anything, nauseous

[limpid hornet]

I am in a lot of pain and it's messing with everything. I will be laying down and start to feel like I am going to pass out.

And sitting up. Only sitting up brings to 100

[rustic kestrel]

Is it possible to have both IST and POTS? I thought they were exclusive of each other

[torpid kernel]

Honestly I’m not sure. I’ve heard of people having both but nothing from my personal experience I’m hoping to get a better doctor so I can get answers

[torpid kernel]

Here’s what I found

[rustic kestrel]

Interesting, my cardiologist said I couldn't have both. The sources from the AI overview on Google are conflicting as well

[torpid kernel]

Yeah exactly, of course Google can be wrong but I’m not sure. There’s someone on insta who says she has POTS and IST as well. But I’m not a doctor so 🤷🏻‍♀️

[rustic kestrel]

Did you try out ivabradine for your IST before beta blockers?

I'm on it and have found it helpful ^^

[bleak niche]

OH and POTS isn't possible tho as far as I know

[silent mesa]

I feel so bad rn I just did way too much

[oblique wing]

it’s possible example: me lol

[bleak niche]

isn't one of the criteria for pots that you don't have OH and no extreme bp difference?

[oblique wing]

oh and pots are both types dysautonomia. i’ve been dx with dysautonomia which presents as oh, pots, gastroparesis, amps, migraine, etc

it’s rare but possible. i also probably have ist as my resting average hr usually stays at 92-97

which is also a good example of a watches drawbacks. my resting hr average in the watch is 84 ish but every time i have a halter it’s 90+

[rustic kestrel]

From Cleveland clinic:
"The difference is, with POTS, that postural is a key component. If you have a POT's patient, and they lay flat, their heart rate's going to be normal. Whereas, an inappropriate sinus tachycardia patient, when they lay flat, their heart rate's actually still going to be fast. It might be in the 90s, but it's still faster than normal."

"So the same group that you think of POTS, is also the same group that's typically affected by inappropriate sinus tachycardia. And they tend to have a lot of the same key symptoms and features. One of the best ways to differentiate it, beyond the tilt test or an active stand test, is to do a heart monitor, and typically just even a 24 hour monitor. With a POTS patient, their average heart rate's going to be normal. They're actually at rest and recumbent much more than their up and active, so their overall average heart rate will be normal. With an inappropriate sinus tachycardia patient, their average heart rate's going to be fast. We classically think over 100 beats per minute, but even into the high 90s is pretty typical."

[quaint narwhal]

You can have both

Idk but people have been diagnosed with both before.

Anyone know a good HR monitor to get?

[bleak niche]

if you read up a bit more you can see the conversation we had about them

[torpid kernel]

No I didn’t. I’m on pindolol, my cardiologist put me on it and then refused to change it after I saw no improvement in my symptoms, it helps lower my hr but that’s it

[rustic kestrel]

That's crazy tbh. I've had a good experience with Ivabradine, my HR is lower and I get less palpitations and fainting episodes and I get like no side effects from it which I know is one of the main problems with beta blockers

[torpid kernel]

Yeah I really have to find a new cardiologist 😭

[rustic kestrel]

best of luck, hope you get some better help soon 🙏

[torpid kernel]

Thank youuu!

[silent mesa]

Hey

[lost swift]

Hi!! I have a few questions for fellow POTS people-

Can a bad POTS episode cause an overall flare up-

Also what are some emergency POTS items Yall keep with you?? I’m making a carry kit for myself and besides my blood pressure cuff I’m not too sure what is good to have

[ocean bear]

GG @boreal sonnet, you just advanced to level 2!

[mellow sedge]

we have suspected PoTS but our limbs fall asleep cos of our FND more than the PoTS

[limpid hornet]

Electrolite drink mixes that go in water. And chips.

Specifically goldfish for me. It's a safe food

But bc basically salt

[lost swift]

Oooo goldfish is a good idea they’re one of the few snack foods I actually like I hadn’t even thought about them

[lost swift]

My limbs fall asleep all the time as well especially if I’m using my hands

[limpid hornet]

So I hopped up the stairs and immediately needed to lay down.

[silent mesa]

Um I have salt packets electrolytes my Apple Watch charger if needed i keep extra water in my bag if needed some snacks and some other things but I don’t wanna get up to grab my pots bag

[silent mesa]

Goldfish was a safe food for me and now I can’t eat it 😭

[limpid hornet]

Why?

[silent mesa]

It makes my stomach super swollen and makes me nauseous I am so angry about it though that was like the one thing I would eat

[limpid hornet]

Is it the gluten?

[silent mesa]

Probably

But I don’t know what causes my gastro issues

[limpid hornet]

Fair

Can you eat other gluten

[silent mesa]

It’s so weird but kinda it depends on the food

[limpid hornet]

Huh

Odd

[hot kelp]

hi hi, i have a question, but lemme start of that i’m not diagnosed with pots.
a year ago i went to the doc because i kept fainting, almost weekly, at school, the gym, work, ect. it started to bother me, along with dizziness, headaches, lightheadedness, ect. i also had an abnormal heart rate, spiking to 220 when jogging for only 10 minutes, and when laying down and then standing up made my vision white, crazy dizziness, and i could feel my heartbeat going crazy. i also would sometimes ‘faint’ (not sure how to call it), but hear everything, be conscious, but i just couldn’t move a single muscle for a few minutes.
this didn’t feel normal, so i went to the doc to check it out.
he played it off as ‘teenager stuff’ and said it will clear up and that it’s nothing to worry about. i still had a weird feeling about it.
fast forward a year, i’m almost 17, and still struggling with the same symptoms i listed from a year ago. it’s been bothering me extra hard, and i was wondering if this could be pots, and if i should go back to the doc and explain that it feels like a little more serious than ‘teenager problems’.

does anyone have advice on this?

[winged moat]

I have the simmilar symptoms, and also pots but i dont think it woild necessary only be pots

I dont think hr going up a lot is a symptom of pots, but i do also have that from me/cfs so im not sure maybe it is

Cant go wrong with going back and get it checked out more

[limpid hornet]

I would say go back. Cause that sounds incredibly frustrating and not fun. Fainting isn't normal teenagers stuff

[hot kelp]

alright, thank u all so much. i think i’m gonna make an appointment

[rustic kestrel]

It sucks a lot that we have to push doctors so hard, but yeah with symptoms like that you really should get investigated imo. I can recommend bringing someone to your appointment to back up what you're saying, and any proof of symptoms like a symptoms diary can help too

[hot kelp]

good idea, tysm!

[silent mesa]

I completed my
Pots emergency bag I forgot to make it and regretted it

[limpid hornet]

I stood up and my heart rate jumped to 120. And I got short of breath and lightheaded.

My chest hurts too

I layed back down

I am just trying to breathe

It hurts

My roommate wants to call 911, I don't need that I just need to lay down. It's not the easiest thing to breathe right now tho

And I'm dizzy

[limpid hornet]

Help. What do I do.

I am trying to do breathing exercises to bring my heartrate down and make breathing easier. It's not working

It hurts

[elder scarab]

try and drink some water if you can

and if youre already laying down put your legs upon something (a chair, couch, the wall)

[limpid hornet]

I am pretty sure I would pass out of i stood up

[elder scarab]

have your roomate ( if you can) get you a thing of water with a straw so you dont have to sit or stand up

[ocean bear]

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

[elder scarab]

also im not sure if i was very clear about the other piece but when i said that you should but your legs on something i mean laying down with your legs above your heart so like this _/

[limpid hornet]

Oh ok.

Sorry, dizzy.

[elder scarab]

no worries i realized i wasnt very clear so that was my bad

[limpid hornet]

I feel really weak

And shaky

[elder scarab]

yeah that can happen when your heart is racing because it also gets your adrenaline going

try to stay as calm as you can and just know itll pass

[limpid hornet]

I'm just trying not to pass out.

Things are a little bit blurry and it's hard to focus.

[elder scarab]

is your roomate with you?

[limpid hornet]

Yeah

[ocean bear]

GG @limpid hornet, you just advanced to level 18!

[elder scarab]

then it will be okay just ride it out

[limpid hornet]

He said if I pass out he's calling

[elder scarab]

have you passed out before?

[limpid hornet]

Yes

[elder scarab]

then let him know that he doesnt need to call if thats your normal

[limpid hornet]

I am starting to feel a tiny bit better. I did pass out

I still feel extremely weak

I can't hold my legs up.

[elder scarab]

Stay laying down until you feel like you can at least sit up

Don't just go from laying to standing, work yourself up to it

[limpid hornet]

I feel really bad.

I tried to just lift my head, it was hard. And my heart rate jumped up. I am just going to stay down for a while

[elder scarab]

yeah it might take awhile so just let yourself rest until you can sit up

[limpid hornet]

This is the worst it's ever been

How long till I should be really concerned

[elder scarab]

It's been almost 2 hours since you sent the first message so I would be a little concerned that it's lasted this long

But I think part of it is that you tried to avoid passing out for so long so that could be a factor

[limpid hornet]

I can sit up if I lean against something now.

[elder scarab]

That's good

Stay there until you feel better and then have your roommate help you to a couch or you bed

[limpid hornet]

I made it. Did not try stairs just went to the couch. I did need to do it super slowly. I can't stand on my own and I definitely got dizzy.

I can sit up without leaning on anything. So yay.

Finally. Starting to not feel as crappy

[elder scarab]

That's good

Make sure to drink lots of water

[limpid hornet]

Yeah. Still can't stand. I get too dizzy

[rustic kestrel]

@limpid hornet are you doing better now?

[limpid hornet]

Yes. Finally

[half horizon]

My POTS is doing pretty bad today and I have no idea why. It usually only gets this bad when I forget my meds but I didn’t this time. And I have a sleep study tonight which is stressing me out and making the flare up worse :P I’m currently lying with my feet against the wall to try to get my heartrate down aaghh

[ashen dust]

Okay so idk if its just me and my POTS but whenever i use the elevator at school i get really light headed when it starts to go up or down and when it stops, idk if it even is a POTS thing

[winged moat]

Idk if its a pots thing either but i have pots and always had that really badly as well, i actually passed out from it a few times but i also cant walk stairs well :p

[ashen dust]

yeah i can’t do stairs either

the pots struggle be real 🥲

[winged moat]

Yep :/

[limpid hornet]

I haven't even got up yet and I already feel lightheaded and weak and just not good

I have drank a bunch of water. It didn't help.

Honestly it just made things worse. Cause I am also nauseous and so my stomach feels not great now

[winged moat]

:<< i also passed oit a few times for just lifting my head up this weekend its horrible

[limpid hornet]

I am not trying to get up today

[mellow sedge]

You shouldn't

[limpid hornet]

I need to do do stuff tho. I can't just be lazy

[mellow sedge]

It's not lazy if you're not able to ^^

M n the airport and just walked so far and barely made it. Still almost hyperventilating and sweating sb

[limpid hornet]

I'm sure I could a little but if I tried but I already don't feel good and don't want to make it worse.

[limpid hornet]

Is there a bench?

Also I need to get around. I have appointments today.

[mellow sedge]

Yea I got to sit

wrestlingunicorn ↩️

[Reply to:](#1143691019242717308 message) Is there a bench?

Try to focus on solely that today

wrestlingunicorn ↩️

[Reply to:](#1143691019242717308 message) Also I need to get around. I have appointments today.

Worry about other stuff that can wait another day

[limpid hornet]

It's just frustrating because I feel like this to some degree most days

The only thing I can't reschedule is the x ray of my foot. Everything else I probably will.

[mellow sedge]

If you're not able to then there's not really much you can do but anyone would be frustrated in this situation and that's valid and totally okay

[limpid hornet]

I am going to sleep.

I have only been awake a couple hours but I am still going to nap.

[half horizon]

Yeah I’ve heard that from quite a few other people with POTS although I rarely experience it myself, only on elevators that are super fast and even then idk if my feeling woozy is outside the realm of normal. I think theoretically it makes sense though as POTS patients are known to often have abnormal responses to things like the Valsalva maneuver (forceful exhalation pushes blood away from the chest, in POTS the BP/circulation doesn’t compensate for that correctly) and the elevator does something similar because of the sudden gravitational forces pulling blood downward, idk if that makes sense rn though I’m kinda tired lol

[ashen dust]

yes, it makes sense dw lol. i never thought about the speed of the elevator, i took the one at physio today and i didnt experence it, and the ones at school i can get from the 1st floor to the 7th floor in only a few seconds (like maybe around 30 secs with stops?)

[ocean bear]

GG @ashen dust, you just advanced to level 4!

[winged moat]

i have it from all elevators, but some that are faster it is worse

[muted imp]

Elevators always make me feel kinda weird, but not to the degree that you describe. I also don’t use them that much because I don’t need a mobility aid, and when I do use them it’s typically a doctor’s appointment.

[half horizon]

Anyone else get saline infusions and feel like at some point they just stopped working? They usually help a lot with my presyncope and excessive thirst and a little with my heartrate but the last few weeks (I get them once a week) it’s like they’ve done nothing :(

[mellow sedge]

tbf saline is essentially salt water so it’s limited in what it can do

[half horizon]

For a lot of people it’s actually quite helpful at least in the short term because many of us struggle with hypovolemia and chronic dehydration but I get what you’re saying, it’s not like a typical drug

[limpid hornet]

I tried to go on a walk today

It did not work