It is a treasure trove of info but it is going to take me 1000 years to finish Disjointed. #hEDS #MCAS #Disautonomia etc

#Disautonomia: wake up wet with sweat. But cold. Change clothes, add a blanket, and crank the ceiling fan.

40 degree temp change in 24 hours + barometric changes + yesterday’s unseasonable warmth = I am a fainting goat today. Thank goodness I’m off all week if nature is going to be a little shithead.
#pots #disability #disautonomia

I’ve only been on ivabridine two days, and this is an abstract only from 2019 — but it FEELS like it’s on the right track.

Basically, when my 8am dose starts to wear off around 4pm I don’t just get a HR increase, I get a resurgence of all the #disautonomia — intestine, temperature, fatigue, etc.

Anyone have a recommended cooling soft cervical collar? Looks like there are plenty of options and I can choose one at random but I thought I’d ask first!

I need to wear mine when I’m upright, esp in my chair for dinner, but I ROAST and very quickly overheat. #CCI #Disautonomia

Podcast episode where I talk about using whimsy as a survival tactic open.spotify.com/episode/7iqA... #halloween #dayofthedead #whimsy #MyalgicEncephalomyelitis #healthcare #canpoli #disability #MyalgicE #pwME #MECFS #fibromyalgia #MEAction #Canada #humanrights #mcas #mcs #disautonomia

Falling bird sketch with fall to crash and CFS dailies

unordnung.net/misc/2025/09...
#cfs #mecfs #disautonomia

10:19 # Syergy leath Go to: TVAM (Transvascular Autonomic Modulation) TVAM (Transvascular Autonomic Modulation) is an endovascular procedure in which a catheter is inserted via a small incision and threaded up into the jugular vein. A balloon is then inflated that stretches the vein. While the balloon is inflated, manual compression is applied over the the balloon. This maximizes the physical energy delivered + the autonomic nerve fibers that travel within the outer help sues of the jugular vein. By stimulating the nerve fibers, • are able to reinvigorate the ANS (autonomic nervous , stem) by improving communication between the organs and the brain. Patients respond with relief from cognitive impairment (brain fog), chronic fatigue, waking headaches, thermal intolerance, bladder/bowel dysfunction, and other debilitating symptoms of autonomic dysfunction. The theoretical basis of TVAM arises from the work of Zohara Sternberg. She describes the relationship between CCSVI and autonomic dysfunction. Our clinical experience supports this theory, we believe that the benefits of the treatment may come through stimulation of the ANS during the course of the procedure. The mechanism of action for TVAM is analoanus to renal denervation Renal • synergyhealthconcepts.com

#Disautonomia friends — anyone know anything about trans vascular autonomic modulation? Someone important to me is asking and I’ve never heard of it.

@exceedhergrasp1.bsky.social

BANJO! I AM MADELINE · Episode

New podcast ep open.spotify.com/episode/6cMs... re finding a balance between the things that buoy my spirit & the things that need to get done but are also to Herculean & are destroying me #disability #MyalgicE #longcovid #MEAction #mcas #mcs #disautonomia

The title pretty much sums it up

"disability prejudice vomited on me by a neighbor"

youtu.be/lHaw1OOujNY?...

#disability #disabilitybias #disabilityprejudice #disabilitypride #ableism #ableismawareness #MyalgicE #pwME #MECFS #fibromyalgia #humanrights #mcas #mcs #disautonomia #heatwave #heat

I wasted a ton of energy picking up this package that could have just been delivered... It isn't easy for people with #disabilities to go out and pick up a package, even if it is only a short walk. That is my day done, the rest will have to wait until tomorrow. #POTS #ChronicIllness #Disautonomia

Rookie mistake. Ate until I was full. #Disautonomia doesn’t like that. Lying with my feet up to keep a normal heart rate.

Love a middle of the night #disautonomia flare up. So much fun.

Trying to enjoy the weather that is causing my POTS to flare up together with my Digimon.
#Digimon #VPets #VirtualPets #Tamagotchi #Bandai #DigimonPendulum #DigimonPendulumZ #PenZ #POTS #ChronicIllness #Disautonomia

The perils of eating with #Disautonomia — ate my first real meal in days (thanks, PEM) and I ate it while it was hot (bc yum) and I am SWEATING. Whole body.

(This, btw, was my first #LongCovid symptom. I ignored it for a long time bc it’s not life altering, just annoying.)

Recuadro azul, con lazo amarillo anunciando el día mundial de lucha contra la endometriosis, el día 14 de Marzo. Afecta al 10% de las mujeres en edad reproductiva, lo que se traduce en 190 millones de mujeres en el mundo. Abajo de esta frase aparece un dibujo de un útero. Y debajo otra fase que explica la relación entre la endometriosis y el sistema nervioso autónomo.

Endometriosis y sistema nervioso autónomo🔗
Esta interacción entre la endometriosis y el sistema nervioso autónomo no solo influye en el dolor, sino también en funciones pélvicas clave.
Comprender esta relación es esencial para nuevos enfoques terapéuticos.
#disautonomia #PoTS #ginecología

Estoy buscando la versión en pdf de The Dysautonomia Project: “Understanding Autonomic Nervous System Disorders for Physicians and Patients”. Bardolf & company. 2015 book, ¿Alguien puede ayudarme? Quiero traducirlo al español
#longcovid #dysautonomia #disautonomia #covidpersistente

Im searching for the pdf version of the The Dysautonomia Project: “Understanding Autonomic Nervous System Disorders for Physicians and Patients”. Bardolf & company. 2015 book, can anyone help me? i want it to translate it into Spanish
#longcovid #dysautonomia #disautonomia

Desperately wanting to connect with #covidcautious #longcovid #POTS #disautonomia folks who understand the intersection of those conditions and #perimenopause #HRT. Feels like a long shot, but what say you bluesky??

If anyone here has Disautonomia/POTS... Hi, how do you deal with air hunger, and if you're a person who menstruates, have you noticed your symptoms getting worse before and during?

I am in chronic illness hell rn

#disautonomia #pots

The synthetic vitamin leaving several Australians with major health issues Pressure is mounting on Australia's medicines regulator to tighten restrictions around vitamin B6 supplements, with more cases of people inadvertently poisoning themselves emerging.

B6 toxicity is in the news again. PSA to those with #POTS or other #disautonomia that liquid IV contains high levels of b6 and drinking multiple of these daily may give you b6 toxicity. I speak from personal experience.

www.abc.net.au/news/2025-01...

January 1st seems like a good time for my periodic PSA: Liquid IV contains large amounts of B6, which is a neurotoxin if you have too much. If you’re drinking multiple of these daily (I drank 2 per day for many months) you may be accidentally poisoning yourself.

#POTS #LongCovid #Disautonomia

My electric blanket died 😭

This is an essential tool for #pain and #disautonomia. Spouse ordered me a new one — I requested an upgrade from throw to twin size. Arrives tomorrow!

Phosphenes

By simply standing up
Neurons organize
Into sacred geometry
Unfolding into the patterns
Of ease and simplicity
So that complexity may evolve

#longcovid #disautonomia #pots #poetry

Accidentally
Gave myself a concussion
BP headache throb

#longcovid #haiku #disautonomia

My BP needs suspenders this morning. It keeps slipping down and tripping me up. I gave you so much salt yesterday, fucker! Get it together!

#disautonomia #longcovid

Dysautonomia is so often ignored in a #ME #MEcfs diagnosis. I wish I’d known about it years ago. I would have avoided so much worry and self-doubt. I was a sitting target for the snake oil vendors and gaslighting Drs. Beta blockers have helped a bit.
#disautonomia #POTS #LongCovid

Figuring out together which treatments work best Add your experience to the largest community-driven research

nurse friend asked me about correlations and comorbidities

so i sent him this link you might be interested in. patients submit their symptoms, diagnoses, and treatments. it makes a giant overlapping map of chronic illness

www.stuffthatworks.health

#NEISvoid #mecfs #eds #mcas #pots #disautonomia

sometimes i feel like such a can’t do person

i didn’t realize how hot i was

#disautonomia sucks and i do not like it

add in brain fog and adhd and autism and it’s really confusing

i feel so much better now that i’m cooled down

hehe!! off and on for years i’ve looked for fuzzy socks for holidays because i wear fuzzy socks a lot

i am just now realizing that i’ve never found fuzzy 4th of july socks because it’s summer and warm and most people wouldn’t wear warmer fuzzy socks then! hehe

#disautonomia