Dysautonomia - Blog Posts

okay random question do any other people w/ POTS have their legs randomly collapse under them and they fall to the ground, or do I need to get checked out for something else-

Patch note: references to "falling" and "falls" have been perceived as frightening. To better enable casual references and conversation these episodes have been renamed "unexpectedly sitting" and "unplanned lying down".

Hey gang, I learned this cool fact so you don’t have to:

If you have POTs and you’re getting a filling or anything that requires a local anesthetic— ask them if it contains epinephrine

Epinephrine, ie—adrenaline—DOES NOT MIX WITH POTS

It’s not common knowledge for most dentists and doctors so give them a heads up so you can get an alternative

Bc the result is the worst POTs flare ever….trust me

My bpm went from 95 to 165 after the injection and it was NOT a cool, chill time

In conclusion:

POTs + epinephrine = NOT A FUN TIME

Having pots is crazy bc I’ll be sitting in the ER with a bpm of 160, just chilling, occasionally slumping over and losing control of motor skills but then going right back to joking—

MEANWHILE the nurses look at me like

Dysautonomia is so weird bc like what do you mean I’m sweating my ass off with this sweatshirt on but if I take it off my skin hurts bc I feel cold BUT IM STILL SWEATING AND ALL OF A SUDDEN EVERYTHINGS BLURRY???

why isn't there much info about coathanger pain with POTS?? or at least why is this not more common knowledge? i don't think i've ever seen anyone talking about this. every time i've asked about it (+other POTS symptoms it comes with in my case) in chronic illness spaces people have suggested everything from fibro, MCAS, a CFS leak, a herniated disc, CCI, etc. but nobody ever said "coathanger pain."

but dysautonomia international posted a silly little graphic on their instagram and now i have my answers to why i was having a ton of symptoms that did suggest a herniated disc but there were no signs of disc herniation upon getting an MRI and for some reason it was triggered by working morning shift/having to be upright for a long time in the mornings. i would get excruciating, searing pain that feels pike a knife has been shoved into the base of my neck and the whole of my upper back would have this icy burning sensation. accompanied by me losing the ability to think straight, losing my coordination, and slurring my speech. i left work crying one morning because of how much pain i was in before i eventually came to the conclusion i couldn't do morning shifts.

that's coathanger pain. my spine is okay (i think...for now, anyway.) according to The Stuff they don't know what causes coathanger pain necessarily but they theorize it has to do with reduced blood flow to those areas of the body (which would track since POTS tends to involve blood pooling in the extremities and such.) it's also not exclusive to POTS and is associated with dysautonomia or orthostatic intolerance in general i think.

One example of the power of obtaining the autonomic history is the Coat Hanger Phenomenon. In people who have neurogenic orthostatic hypotension or orthostatic intolerance, they can complain of pain, or like a charley horse kind of sensation, in the back of the neck and shoulder areas in the distribution that’s like a coat hanger. And it goes away when the person is lying down. That’s an important symptom. And the way I explain it is that the muscles that control your head are tonically active, otherwise your head be falling down all the time. Tonically active. That means they’re using up oxygenated blood all the time. Well suppose you’re in a critical situation where there’s a drop in blood flow at the delivery of oxygenated blood to the head. In that situation these muscles are not getting enough oxygenated blood. They’re tonically active, so they’re producing lactic acid and you get a charley horse, just like you’d have a cramp anywhere else. It’s a skeletal muscle thing. So, I think when somebody complains of Coat Hanger Phenomenon, that’s a very important sign or symptom. And that is not invented. That’s a real phenomenon. It points to ischemia to the skeletal muscle holding your head up.

(Dr. Goldstein, The Dysautonomia Project)

worsening cognitive dysfunction, slurred speech, and worsening coordination because blood's not getting to my brain. bordering on emergency-room-level pain in my upper back and neck because not enough blood is getting to those parts of my body. got it.

anyway, i legit have NEVER seen this discussed until recently and i thought i should share.

recovering from a simple cold really takes incredibly long when you have a chronic illness...

like please i wanna be able to do at least some things again

triggers for dysautonomia flare-ups ✿

these are some things I have noticed, either in myself or in other people, which tend to make symptoms of dysautonomia worse or even cause a flare.

environmental / external:

heat

cold

humidity

changes in barometric pressure

not meeting body's needs:

dehydration

hunger / low blood sugar

sleep deprivation

poor quality sleep

not taking breaks

other bodily-related stressors:

stress

exercise

being upright for too long

drugs / certain medications

raising arms above head

lifting heavy objects

squatting / bending over

strong emotions

standing up too fast

period / menstrual cycle

dietary:

caffeine

sugar

carbs

dairy

alcohol

fatty foods

artificial sweeteners

eating too much / too little

eating too quickly

Weird kind of validation to having to call a physical therapy session early for the third time in a row. I got a cold a couple weeks ago so my heart rate is still being even stupider than usual. It's incredibly frustrating obviously, but it's also honestly nice to see some stats clearly representing a problem after my doctor refused to refer me to a cardiologist for more testing because he ran a preliminary test wrong 🙃

Also got told I should be walking less to recover unfortunately. I need to PACE and go for WALKS. Real stupid I think.

Reminds me of when I went to a Renaissance festival with a big wooden staff and I was so excited because I didn't have to worry about my balance so much. And then it still took me months to start using a cane even just at home

A reminder that if you didn’t need a mobility aid you wouldn’t be day dreaming and fantasizing about how they would help you navigate the world and that no matter how much internalized ableism you hold it won’t change your reality about your conditions and you SHOULD do what is best for you because no one will punish you more than yourself if you keep ignoring your needs

What doesn't kill you flares up and tries again

Sure, I might not be as healthy as some people, but can they do this? *stands up and passes out*

chronic pain and final exams at the same time isn't fun

would love to make friends with some other chronically ill people!

some stuff about me:

i'm 19 and diagnosed with dysautonomia. i also got some chronic back pain and other stuff i'm trying to get checked out

feel free to message me if you aren't some creep :)

why is chronic illness so difficult to understand for healthy people?

like "yes, i am ill everyday"

"no, i will not be getting better soon"

me: "i'm so fatigued and my brain fog is pretty bad"

healthy person: "stop complaining, i'm tired too"

your "tired" is not the same as my fatigued! sleep won't cure me, this is not how it works!

my back pain is so bad today idk how i'm supposed to do things or even sleep!

i'm already doing physio therapy so idk what else to do about it at this point

really tired but making sure to stay awake until the point of exhaustion so i hopefully actually fall asleep

recovering from a simple cold really takes incredibly long when you have a chronic illness...

like please i wanna be able to do at least some things again

any tips for what helps with insomnia?

having insomnia when having a chronic illness sucks!

my chronic illness flares up cause i don't get enough sleep, but i don't get enough sleep cause of my chronic illness

"omg do you have a hangover?"

nope, just a chronic illness

had to cancel so many plans with my friends recently...

do they seem mad? -nope

did they say that they are mad? -nope

do i still think that they are mad? -absolutely

please if you're sick stay at home if possible or at least wear a mask!

... even if it's just a cold some people don't have the best immune system and i am tired of being sick on top of my chronic illness every other week

barely having symptoms for a few days made me think i was cured... turns out that isn't the case

how are you supposed to tell people who you recently became friends with that you sometimes need to use a mobility aid?

is there even a way to make it not awkward? because it shouldn't be awkward

there are things i need to do, but i can't cause i'm sick

pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering,

had a low fever for almost a week now, but am refusing to see a doctor cause "not like they would do much"

and that's on doctors constantly dismissing people with chronic illness

feeling a flare up coming, but trying to push it down cause there is stuff to do... knowing very well it will do nothing... if anything it'll make it worse