• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. K

    Dysautonomia International 2024 conference

    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...
  2. SpinachHands

    What kind of doctor could help with nervous system disorder?

    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...
  3. C

    My strange 'freeze' response when I try to focus on something - anyone else?

    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...
  4. SpinachHands

    Managing the balance between the parasympathetic and the sympathetic nervous systems going into overdrive

    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.)...
  5. W

    Copper, Thiamine, Memory Loss, Adrenal Issues

    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...
  6. R

    Head-down tilt reduces the heart rate in postural tachycardia syndrome in acute setting: a pilot study

    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...
  7. SWAlexander

    Treatment of 95 post-Covid patients with SSRIs

    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...
  8. BaileyBeached

    Urolithin A effects particularly in MCAS and cci

    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...
  9. K

    Help with Autonomic Function Testing

    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...
  10. SWAlexander

    Long COVID: major findings, mechanisms and recommendations

    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...
  11. Ingold12

    Possible CFS with neurological symptoms

    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...
  12. HurrySaveMe

    Head pressure, mostly felt in the back of my head and neck area, gets worse when I do certain activities

    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...
  13. SWAlexander

    NIH team documents various types of neuropathy after COVID vaccination

    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...
  14. C

    Neurovascular Dysregulation and Acute Exercise Intolerance in ME/CFS: A Randomized, Placebo-Controlled Trial of Pyridostigmine (Joseph et al, 2022)

    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...
  15. leokitten

    Therapeutic efficacy of atypical antipsychotic drugs by targeting multiple stress-related metabolic pathways (Cai et al., Transl Psychiatry 2017)

  16. pattismith

    Dysautonomia may explain the persistent symptoms observed in long COVID-19 patients, such as fatigue and hypoxia 2021

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

    CNS-related crashes with dominant nausea

    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...
  18. Pyrrhus

    What Exactly is Dysautonomia?

    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...
  19. Pyrrhus

    Gastrointestinal Reflux as Dysautonomia

    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...
  20. Pyrrhus

    Erectile Dysfunction as Dysautonomia

    :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...
  21. Pyrrhus

    Orthostatic Intolerance (OI) Basics: Dysautonomia of Blood Vessels, Low Blood Volume, and Baroreflexes

    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...
  22. SNT Gatchaman

    An attempt to explain the neurological symptoms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2021, Wirth et al)

    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...
  23. nerd

    Reduced Parasympathetic Reactivation during Recovery from Exercise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    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
  24. nerd

    Review: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Neurological Entity?

    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
  25. SNT Gatchaman

    After Months Of A Racing Heart And Burning Feet, A COVID Long-Hauler Gets A Diagnosis (NPR, May 2021)

    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...
  26. frozenborderline

    Long Covid, MCAS and Environmental Toxins--Lake Tahoe 2.0?

    https://openletteropenmedicinefoundation.com/long-covid-and-environmental-toxins-lake-tahoe-2-0/ Is the CDC and general scientific community retreading ground from the Lake Tahoe outbreak that caused the invention of the CFS syndrome /category of illness ? Are they reinventing the wheel, so to...
  27. V

    What are symptoms of autoimmune encephalitis?

    I have a vague knowledge of it and have seen various posts scattered, so was wondering if those who have been through it can say some more about how it presented in them. Also interested in whether there is any connection to that and, for lake of a better term, (new onset) "neuropsychiatric" (I...
  28. Pyrrhus

    Endothelial Dysfunction in ME

    I thought I'd start a thread to summarize discussions about the different types of endothelial dysfunction that might be found in ME. Please feel free to add to this thread as needed. What is "Endothelial Dysfunction"? Blood vessels are enclosed by a layer of cells called endothelial cells...
  29. Pyrrhus

    Exercise Intolerance: Insights from Invasive Cardiopulmonary Exercise Testing of Patients with ME/CFS (Joseph et al., 2021)

    A new publication by the team of Phillip Joseph, Anne Oaklander, and David Systrom, which I personally find exciting. Insights from Invasive Cardiopulmonary Exercise Testing of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (Joseph et al., 2021)...
  30. Jwarrior77

    Pupil Hippus Anyone? (Pupils constricting/dilating)

    Does anyone get bad exaggerated hippus where your pupils go back and forth from constricting and dilating? This is regardless of light hitting them. The pupils will keep oscillating back and forth. I swear I can even feel it do this and my vision will get shaky/jerky when its bad. I don't know...