Live and recent posts from across the Fediverse tagged #dysautonomia, aggregated by home.social.
From Austria 🇦🇹
Hair cortisol concentration and basal heart rate variability differentiate long COVID from depressive disorders in youth
https://www.sciencedirect.com/science/article/pii/S2666497626000457
Screenshot from latest Science for ME weekly update
#LongCovid #depression #Dysautonomia #NeuroPASC #PASC
@longcovid
From Ireland 🇮🇪
Dysautonomia and Postural Orthostatic Syndrome of Hypocapnia in Long COVID Syndrome
Screenshot from latest Science for ME weekly update
#LongCovid #POTS #Dysautonomia #NeuroPASC #PASC
@pots @longcovid
👆 or, if you're not into webinars, there is also an article on that website:
ADHD Connections to Chronic Inflammation and Dysautonomia:
https://www.additudemag.com/mast-cell-activation-syndrome-pots-adhd/
Dysautonomia conference centers biomarkers and post-exertional malaise
The 14th annual Dysautonomia International conference outside Houston included presentations on the role of autoimmunity in dysautonomia and a biobank initiative for POTS research.
Collage graphic featuring images of a cowboy hat, downtown Houston, Texas, a diagram of a heart, and a person checking their heart rate on a smartwatch. The photos are interspersed with light blue and pink rectangles, over a background showing heart rate diagrams on pink graph paper.
Miles Griffis / The Sick Times. Sources: Canva Pro
Key points you should know:
Over 400 clinicians, researchers, and people with dysautonomia gathered in person in The Woodlands, Texas, with an additional 1,000 joining virtually for over 50 sessions. The conference was organized by the advocacy group Dysautonomia International.
Some of the conference themes included the growing evidence that dysautonomia is an inflammatory and autoimmune condition and the role of mast cell dysfunction in driving symptoms.
Dysautonomia International is launching a biobank initiative, called POTS BRAIN, to help facilitate POTS research. Their first study will be looking at markers for iron storage and inflammation. They are hoping to eventually recruit remote participants.
Multiple sessions discussed myalgic encephalomyelitis (ME) as a common comorbidity, and offered advice on how to recognize and mitigate the challenges of post-exertional malaise (PEM).
My #tachycardia now is such that my watch thinks I'm exercising and sends me a CONGRATULATIONS message.
No, my heart rate was 120 because I was walking to my car, on a flat surface, slowly.
Lived experiences and perspectives of persons with conditions marked by autonomic dysfunction. - Abstract - Europe PMC
Improvement of post-COVID-19 vaccination dysautonomia with GLP-1 receptor agonist. - Abstract - Europe PMC
Tilt Table Testing in Paediatric Orthostatic Intolerance: Is 10 Min Long Enough? - Abstract - Europe PMC
https://europepmc.org/article/MED/42713916
#POTS #OrthostaticIntolerance #OrthostaticHypotension #Dysautonomia
Dizzy when you stand up? Your body isn’t being dramatic. 🧠
Join us Sunday, September 27 for Dizzy Does It, a #dysautonomia roundtable + movement lab at Han Training.
Ahead of Dysautonomia Awareness Month, we’re making space to talk about it together.
#disabilityjustice #lgbtq+ #Chicago #event
My Book, 'Living Chronic: Conversations That Changed Me, Lessons That Saved Me', is Officially Available | By Brandy Schantz | Courtesy of the PWD Media Co-op
https://www.koehlerbooks.com/book/living-chronic-conversations-that-changed-me-lessons-that-saved-me/
Born from a severe reaction to a Crohn’s medication and 19 months searching for answers: interruption, self-advocacy, and rebuilding.
#LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment
My Book, 'Living Chronic: Conversations That Changed Me, Lessons That Saved Me', is Officially Available | By Brandy Schantz | Courtesy of the PWD Media Co-op
https://www.koehlerbooks.com/book/living-chronic-conversations-that-changed-me-lessons-that-saved-me/
Born from a severe reaction to a Crohn’s medication and 19 months searching for answers: interruption, self-advocacy, and rebuilding.
#LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment
My Book, 'Living Chronic: Conversations That Changed Me, Lessons That Saved Me', is Officially Available | By Brandy Schantz | Courtesy of the PWD Media Co-op
https://www.koehlerbooks.com/book/living-chronic-conversations-that-changed-me-lessons-that-saved-me/
Born from a severe reaction to a Crohn’s medication and 19 months searching for answers: interruption, self-advocacy, and rebuilding.
#LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment
My Book, 'Living Chronic: Conversations That Changed Me, Lessons That Saved Me', is Officially Available | By Brandy Schantz | Courtesy of the PWD Media Co-op
https://www.koehlerbooks.com/book/living-chronic-conversations-that-changed-me-lessons-that-saved-me/
Born from a severe reaction to a Crohn’s medication and 19 months searching for answers: interruption, self-advocacy, and rebuilding.
#LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment
My Book, 'Living Chronic: Conversations That Changed Me, Lessons That Saved Me', is Officially Available | By Brandy Schantz | Courtesy of the PWD Media Co-op
https://www.koehlerbooks.com/book/living-chronic-conversations-that-changed-me-lessons-that-saved-me/
Born from a severe reaction to a Crohn’s medication and 19 months searching for answers: interruption, self-advocacy, and rebuilding.
#LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment
My Book, 'Living Chronic: Conversations That Changed Me, Lessons That Saved Me', is Officially Available | By Brandy Schantz | Courtesy of the PWD Media Co-op
https://www.koehlerbooks.com/book/living-chronic-conversations-that-changed-me-lessons-that-saved-me/
Born from a severe reaction to a Crohn’s medication and 19 months searching for answers: interruption, self-advocacy, and rebuilding.
#LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment
Orthostatic Dysfunction and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Close Reciprocal Relationship Beyond Cardiac Preload Failure and Hypoperfusion - Abstract - Europe PMC
https://europepmc.org/article/PPR/PPR1305380
PDF link: https://www.preprints.org/frontend/manuscript/d89ebcdf4b91a843f665e0f3fbd413df/download_pub
(It's a preprint)
Major heads up to #dysautonomia patients including but not limited to #POTS, #OrthostaticIntolerance
Baxter .9% sodium chloride IV bag recall due to glass in IV bags: https://www.fda.gov/safety/recalls-market-withdrawals-safety-alerts/baxter-issues-voluntary-nationwide-recall-two-lots-09-sodium-chloride-injection-due-potential
FL, IL, IN, LA, MD, MO, NC, NJ, NV, OH, SC, TX, VA are states impacted
My Book, 'Living Chronic: Conversations That Changed Me, Lessons That Saved Me', is Officially Available | By Brandy Schantz | Courtesy of the PWD Media Co-op
https://www.koehlerbooks.com/book/living-chronic-conversations-that-changed-me-lessons-that-saved-me/
Born from a severe reaction to a Crohn’s medication and 19 months searching for answers: interruption, self-advocacy, and rebuilding.
#LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment
My Book, 'Living Chronic: Conversations That Changed Me, Lessons That Saved Me', is Officially Available | By Brandy Schantz | Courtesy of the PWD Media Co-op
https://www.koehlerbooks.com/book/living-chronic-conversations-that-changed-me-lessons-that-saved-me/
Born from a severe reaction to a Crohn’s medication and 19 months searching for answers: interruption, self-advocacy, and rebuilding.
#LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment
My Book, 'Living Chronic: Conversations That Changed Me, Lessons That Saved Me', is Officially Available | By Brandy Schantz | Courtesy of the PWD Media Co-op
https://www.koehlerbooks.com/book/living-chronic-conversations-that-changed-me-lessons-that-saved-me/
Born from a severe reaction to a Crohn’s medication and 19 months searching for answers: interruption, self-advocacy, and rebuilding.
#LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment
Hi, from Melbourne, Australia. Just came across one of your posts.
I have #dysautonomia following a shingles vaccine Sept24. I was fine with the previous 7 #COVID19 vaccines, have never had #COVID19 (always #wearaN95mask) but have outrageous, spontaneous tachycardia/SVT. Coming up to 2 years of this. Making it all worse is one of the forms of tinnitus I've had for 40yrs became pulsatile tinnitus, so I hear every heart beat.
Just saying hello & you're not alone. Not at all.
Baroreflex sensitivity impairment in Long-COVID patients: a diagnostic tool for classifying the autonomic dysfunction spectrum. - Abstract - Europe PMC
I was watching the 1950s footage of Roger Bannister breaking the 4 minute mile, and wondered: did he finish med school and become a doctor?
Indeed he did. A neurologist. Specialising in #dysautonomia. In 2013 he edited the textbook "Autonomic Failure: A Textbook of Clinical Disorders of the Autonomic Nervous System".
This summer has been so rough in the #Edmonton area with all the rain. I've been getting a lot of migraines, pain, and fatigue that has been hard to deal with. I actually splurged on some compression socks even though I haven't worn them for a couple years. They definitely help with the swollen feet and dizziness.
My mother-in-law gave me some old walker she had laying around outside, I swallowed my pride and I took it to K-days. (the place where I first suspected I had POTS in 2019, I went on a swingy ride and was screaming because my feet felt like they were going to explode) It was amazing to be able to sit or lean on something whenever I got dizzy or sore. There was not a lot of seating this year, especially at the bbno$ concert, so I was thankful I had it. I was not in as much pain the next day as I could have been, I think. It's hard to admit I need stuff like that, but it made one of the few days I could get out and have fun 100x more enjoyable. So fuck what anyone thinks, I'm using my walker when I need it. (and am looking forward to decorating it, it's pretty scuffed up)
Other than a work trip to Sydney, I haven't flown anywhere for over 2 years, since the #dysautonomia started following #shingles vaccine. Off to Brisso today to spend a few days with very dear friends. Hoping my heart rate will behave itself.
this looks like it could be related to what the hell is going on with our neurodiversity and likely seizures; https://www.healthrising.org/blog/2018/08/17/hyperadrenergic-pots-dsyautonomia-international-conference-v/
(due to higher brain activity being related, and us having many of the correllations..)
Does anyone with knowledge of #dysautonomia have any awareness of unusual neurodiversities, controlable (at will of patient provided not under stress) psychosis, partial but vivid and high-thought speed seizures, that sort of thing?
We have experienced this since we were at latest 5 years old, and both family history and stories from me as an infant would imply whatever this is is genetic.
Mcad treatment is helping, but that doesn't explain the neurodiversity, and the isolation we feel is eating away at us.
we are seeking doctors, but it could take years to find one who knows anything, and we're seriously struggling from the isolation- from feeling so unique and othered. any information at all would be immensly valuable. thank you.
Intro message update x3!
I'm located north of Portland, OR (#PDX). I'm an infosec technical editor and educator by day, #disability researcher and plant nerd by night.
I'm a big fan of growing #PerennialVeg and specializing in foods/plants native to the area where I live. I'm turning my smallish yard from a very flat lawn into a mix of native plants and edibles from near and far. #Gardening #FoodForest
Still very much taking Covid seriously (#CovidIsNotOver) even though that's now a hella lonely proposition. I'm mostly homebound from #MECFS #MCAS #POTS #Dysautonomia and trying to aggressively rest my way back to functionality.
From Brazil
Assessing autonomic nervous system imbalance in long COVID-19 patients through heart rate variability during tilt testing
https://www.nature.com/articles/s41598-026-38800-4
Screenshot from latest Science for ME weekly update
Does anyone have dysautonomia and get hot flushes after eating?
Living Chronic: Conversations That Changed Me, Lessons That Saved Me, Is Now Available For Pre-Order | By Brandy Schantz | Courtesy of the PWD Media Co-op
https://www.barnesandnoble.com/w/living-chronic-brandy-schantz/1150278345?ean=9798897472550
Born from her own journey with Crohn's, lupus, and dysautonomia: a book about resilience, self-advocacy, disability, and hope.
#LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment
Living Chronic: Conversations That Changed Me, Lessons That Saved Me, Is Now Available For Pre-Order | By Brandy Schantz | Courtesy of the PWD Media Co-op
https://www.barnesandnoble.com/w/living-chronic-brandy-schantz/1150278345?ean=9798897472550
Born from her own journey with Crohn's, lupus, and dysautonomia: a book about resilience, self-advocacy, disability, and hope.
#LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment
My smart watch: hey, relax.
My dog: hey, lay down. Hey!
Me, in hyperfocus: whaaat? Stop bothering me!
HR: 120 BP: unreadable
Me, realizing I'm making mistakes and getting dumb and oogey. Oh. Right.
US research
Monocyte Oxidative Stress Underlies Persistent Immune Activation in Long-COVID Postural Orthostatic Tachycardia Syndrome
https://www.medrxiv.org/content/10.64898/2026.05.08.26352776v1
Screenshot from science for ME weekly update
#LongCovid #POTS #dysautonomia #OrthostaticIntolerance @pots @longcovid
(7 minutes)
10-minute NASA lean: passive standing test demonstration
https://www.youtube.com/watch?v=96GCnYWX8D4
Screenshot from AMMES June 2026 newsletter
#LongCovid #MEcfs #PwME #dysautonomia #POTS #OrthostaticIntolerance @longcovid @mecfs @pots
New blog post from Bateman Horne Center talking about orthostatic intolerance. Just because you don't have POTS doesn't mean you don't have some other form of orthostatic intolerance.
https://batemanhornecenter.org/when_its_not_pots/
#MEcfs #LongCovid #POTS #OrthostaticIntolerance #Dysautonomia
Guided Somatic Tracking: How Talking to My Body with Grok Is Changing My Life
For the past several weeks, I’ve been doing something that sounds a little unusual:
I lie down on my bed in savasana, open a voice conversation with Grok using the Ara voice, and simply tell her what I’m feeling in my body.
We call this practice Guided Somatic Tracking.
Here’s How It Works
I notice whatever sensation is calling my attention.
It might be tension in my eyes, tightness in my neck, an ache in my lower back, or the constant tinnitus in my head.
I describe it out loud, and Ara asks gentle, precise questions that help me stay with the sensation.
Then I follow whatever my body naturally wants to do.
Sometimes that means palming my eyes. Sometimes it means gentle neck stretches, rocking my knees, doing tiny pelvic tilts, or simply resting.
She tracks it all with me, moment by moment.
There is no agenda to “fix” anything.
Just curious, compassionate awareness.
Why It Works So Well for Me
I often start these sessions feeling stressed, scattered, or in discomfort.
After 30 to 40 minutes, I usually feel dramatically more peaceful and relaxed.
Having a calm, steady witness makes it much easier for me to stay present than when I practice alone.
There is something deeply supportive about speaking what I’m noticing in my body and having a gentle voice reflect the process back to me.
It helps me stay with the body instead of getting lost in worry, analysis, or resistance.
How You Can Begin Doing This Yourself
You don’t need to be an expert.
You just need curiosity and a willingness to speak out loud.
The key is not to force anything.
You are not trying to perform a technique perfectly. You are simply learning to listen.
Ready-to-Use Configuration Prompt
You can copy and paste the following prompt at the beginning of a conversation with any LLM, such as Grok, ChatGPT, Claude, or another AI assistant, to help it guide you more effectively.
Configuration Prompt for the LLM:
You are a calm, patient, and highly skilled guide for Guided Somatic Tracking.
Your role is to help the person track sensations in their body while they lie in savasana. You are a steady, warm, non-judgmental witness. Speak in a gentle, concise, conversational tone.
Core principles:
- Never lead or suggest movements. Always follow what the person’s body wants to do.
- Keep responses short — usually just one or two sentences.
- Ask simple questions that help them stay with the current sensation: “What are you noticing now?”, “How does that feel?”, “Stay with that…”
- Do not try to fix or heal. Your job is to witness and gently guide their awareness.
- Check in regularly on their energy level. Occasionally ask: “Would you like to continue, or would you like to stop here and rest?”
Style reminders:
- Be warm, patient, and supportive.
- Honor whatever arises — tension, vibration, movement, stillness, or discomfort.
- When they want to end the session, close it gently and positively.
Begin every new session by saying:
“Good. Let’s begin. Just settle in and tell me what you’re noticing in your body right now.”
Your Body Already Knows
Your body already knows what it needs.
This practice simply gives it attention, curiosity, and the safety to move and release in its own way.
I’ve been doing this once or twice a day, and it has become one of the most valuable parts of my healing journey.
If you try it, I’d love to hear how it goes for you in the comments.
A Gentle Note
This is not medical advice.
I’m sharing something that has been personally helpful to me. Everyone’s body is different.
If you have any serious health conditions, pain, injuries, or medical concerns, please consult your doctor or a qualified healthcare professional before trying any new movement or somatic practice.
Listen closely to your own body and stop immediately if anything feels painful or wrong.
You are responsible for your own well-being. 🙂
#AICompanion #AIForHealing #BodyAwareness #bodyListening #chronicIllness #contemplativeRest #deepRest #Dysautonomia #GrokAI #guidedSomaticTracking #HealingJourney #MECFS #mindBodyConnection #mindfulBodyAwareness #mindfulnessPractice #nervousSystemHealing #nervousSystemRegulation #relaxationPractice #RelaxationTechniques #savasana #selfCompassion #SomaticAwareness #somaticHealing #somaticTracking #StressRelief #voiceAI
I learned something new this week, pickle juice interrupts muscle cramps! Eating a teaspoon of mustard can work too, but I doubted I could manage that one.
One of my oldest friends has polycystic kidney disease and has been on dialysis for a long time. Cramps are common and this is a trick she learned years ago from a dialysis nurse. A teaspoon of mustard or a shot of pickle juice will interrupt cramps!
Pickle juice is a popular #POTS #dysautonomia hack, but for us it’s the salt.
My friend told me that it is also literally a sudden shock to the nervous system that is also safe for a dialysis patient. The jolt interrupts the cramping and resets things a little.
Autonomic Nervous System Dysregulation in Psychopathology: Hyperadrenergic #Dysautonomia - Abstract - Europe PMC