dysautonomia

I care for my partner who is bedbound with ME/LC, dysautonomia and MCAS. They have been in a bad MCAS flare for just over a month, and have been having a new odd symptom in this period that we can't quite identify. In reaction to something, they suddenly become weak, their body goes limp, eyes...

I've been trawling this forum trying to read everything I can about choline and methyl but it's all going over my head. My partner has very severe ME and dysautonomia and is bedbound. Weirdly their ME has been improving massively, but their autonomic dysfunction/weird nervous system...

TLDR at the end! My partner who I care for is fully bedbound with severe long COVID/ME and dysautonomia. Their LC/ME has actually been improving recently, especially after a month on Ketotifen, but the dysautonomia has been worsening. The past few weeks especially have included some new...

My partner recently had an appointment with Dr Claire Taylor, a private Long COVID/dysautonomia specialist in the UK, and she's sending through recommendations for blood tests to our GP. She said about testing morning cortisol levels, and a 24hr urine collection for adrenal issues, I assume the...

Haven't been here in a while so some background info- I care for my partner with long COVID/ME who has been fully bedbound since December. Their condition has only worsened with an onset of severe autonomic dysfunction in February. They are only able to have liquid food, cannot sit up, can't...

https://www.dysconf.org/ Some speakers and topics have been announced on Facebook, but the topics aren’t on the website yet. https://www.facebook.com/DysautonomiaInternational/ You can sign up to attend in person, attend remotely, or to get links to most of the lectures shortly after the...

My partner had a reaction to LDN that has caused their nervous system to go into overdrive. They're swinging between an overactive sympathetic nervous system and overactive parasympathetic. It's crashing them more and they don't seem to be improving. They were already fully bedbound and very...

Hi everyone, Part of my autonomic dysfunction seems to involve a strange kind of freeze response. I haven't seen it mentioned by other people - maybe hints of it - but not anywhere a description that maps onto my own situation. I wanted to describe it here and see if it is familiar to anyone...

This is a continuation of my previous post that I thought may warrant it's own thread. (TLDR for linked post for context: my partner with very severe ME had a bad reaction to LDN that seems to have put their sympathetic nervous system into overdrive for the past two weeks, despite stopping LDN.)...

Hi Everyone, I've been reading this forum off and on for years. There are so many knowledgable and helpful people here. My introduction post was just approved (from May), but I have other issues, and am hoping someone can help me with them, or point me in the right direction. A couple months...

Head-down tilt reduces the heart rate in postural tachycardia syndrome in acute setting: a pilot study By Peter Novak, dysautonomia specialist at Brigham and Women's Hospital. https://pubmed.ncbi.nlm.nih.gov/37919442/ Has anyone tried this "head down tilt", maybe on an inversion table? I...

Abstract After Covid-19 infection, 12.5% develops post-Covid-syndrome (PCS). Symptoms indicate numerous affected organ systems. After a year, chronic fatigue, dysautonomia and neurological and neuropsychiatric complaints predominate. In this study, 95 PCS patients were treated with selective...

Hi everyone, I have mitochondrial dysnfunction as well mcas, cci, ijv compression, Lyme and severe dysautonomia. Urolithin A was recommended to me for mitochondrial issues, and I saw a paper saying it also boosts collagen production and a posts here or there saying it seemed to help floxed...

Last year an annoying doctor who referred me for this test but he didn't do much about to try to fix things or help me - referred me fot his test that I am attaching here. My main Symptoms are - GI Issues/Digestion (SIBO) - POTS - Very bad exercise intolerance where I feel sick and very dizzy...

It is a very extensive study. Abstract Long COVID is an often debilitating illness that occurs in at least 10% of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections. More than 200 symptoms have been identified with impacts on multiple organ systems. At least 65 million...

Hi everyone, I'm new to the forum, in June 2022 I got what I presume was a viral illness, with symptoms such as fever, cough, throat pain and slight dysphagia. All symptoms besides the dysphagia subsided until I got tired moving for a new job and, between July and August, I first developed...

I started experiencing this late July/early August last year, it started off as neck pain which initially I went to a chiropractor for. Eventually this neck pain evolved to head pressure, mostly felt in the back of my head and neck but also feel it in my forehead at times. I've experienced this...

In a recent study posted to the medRxiv* preprint server, researchers investigated if coronavirus disease 2019 (COVID-19) vaccination could result in neuropathic symptoms. Vaccines against severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) essentially reduce morbidity and mortality...

Authors Phillip Joseph, Rosa Pari, Sarah Miller, Arabella Warren, Mary Catherine Stovall, Johanna Squires, Chia-Jung Chang, Wenzhong Xiao, Aaron B. Waxman, David M. Systrom, Abstract Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is characterized by intractable...

https://pubmed.ncbi.nlm.nih.gov/28509906/

Clinical characterization of dysautonomia in long COVID-19 patients | Scientific Reports (nature.com)

I'm curious if any of you has the same manifestation of acute crashes as I have. Because in my case, the sequence is relatively consistent among all the incidents. Yesterday, I had another lukewarm bath. These baths happen to change something so that I wake up early and feel ready for the day...

What is Dysautonomia? For those who may be too afraid to ask, the word "dysautonomia" simply refers to any dysfunction of the autonomic nervous system. The autonomic nervous system is the part of the body's nervous system that monitors and automatically controls the internal state of the body...

Gastrointestinal Reflux as Dysautonomia Within the esophagus and gastrointestinal system there are actually four different types of reflux, each associated with four different valves (sphincters) in the digestive system. All four valves (sphincters) in the digestive system are controlled by the...

:star:The more you know!:star: So, the parasympathetic branch of the autonomic nervous system is responsible for producing a penile erection (or vaginal lubrication) in response to stimulation. This means that if there is a problem with this part of the autonomic nervous system, one might...

I just read a good overview article covering all the basics of orthostatic intolerance: Common Syndromes of Orthostatic Intolerance (Stewart, 2013) https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC3639459/pdf/peds.2012-2610.pdf (or https://dx.doi.org/10.1542/peds.2012-2610) This paper starts...

An attempt to explain the neurological symptoms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Klaus J. Wirth, Carmen Scheibenbogen and Friedemann Paul Link Full text link Abstract There is accumulating evidence of endothelial dysfunction, muscle and cerebral hypoperfusion in Myalgic...

Authors: Jessica Van Oosterwijck, Uros Marusic, Inge De Wandele, Mira Meeus, Lorna Paul, Luc Lambrecht, Greta Moorkens, Lieven Danneels, Jo Nijs Published on: September 30, 2021 pmid: 34640544 doi: 10.3390/jcm10194527 Abstract

Authors: Iñigo Murga Gandasegui, Larraitz Aranburu Laka, Pascual-Ángel Gargiulo, Juan-Carlos Gómez-Esteban, José-Vicente Lafuente Sánchez Published: 27 September 2021 doi: 10.3390/medicina57101030 Abstract

A 54 yo nurse from San Diego describes how her previously fit-and-healthy life has been impacted by POTS, following COVID-19. The long time to diagnosis is discussed, along with helpful treatments (Ivabradine), as well as lifestyle modifications. In particular: fluid loading extra salt small...