Symptoms - Blog Posts

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.

this is gonna be a really cool frame to apply to anyone with any mental illness stiffer than light social anxiety. can't wait to be berated for having an autistic meltdown and not taking personal responsibility for how much of a fucking bummer it is for everyone around me lmfao

Me when i feel like i am going to die.

Goes to the fucking doctor.

*Symptoms magically disappear.*

Well great guess I was just overreacting.

*Leaves doctor*

*Symptoms back in full force.*

I swear the bitch ass Symptoms know that they're about to be caught.

*showing visible symptoms* oh my god i need help desperately

*symptoms go away for one day* what if im just faking it

This site comes recommended by a friend of the blog, and oh boy does it look useful! Since it’s meant for use by doctors as well, the information it will give you doesn’t go through the kinds of “for the patient” filters you’d see on sites like WebMD.

The interface is clean and simple, and once you’ve gotten a list of conditions and selected one to investigate, it opens an on-the-page window for you with the Merck Manual’s entry. There’s in-depth data, a quick-view of the highlights of the condition, and there are even links out to other providers like Mayo Clinic, Medline, WebMD, Google, and more.

What’s particularly nice is that when you’re done looking at one condition, you can click “back to results” to get straight back to the list.

This one seems to do a good job of pulling up the common but quote-unquote rare diseases in the list, which certainly makes it feel a little more trustworthy.

Nonbinary folks, do note that it requires you to enter a binary gender.