• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. 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...
  2. 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...
  3. Bansaw

    Is an Inversion Table helpful for POTS people (blood flow to head) ?

    I hear some different opinions on an inversion table for POTS sufferers. I'm thinking bloodflow to the head might always be helpful, but I've read one or two people not recommending an inversion table. Any comments ?
  4. SWAlexander

    ME/CFS, FM, RA, SS, POTS, PVACS, Lyme:

    This is the first complete research that confirms my long-standing theory. This is a long paper, though reading is worth it. ME/CFS, FM, RA, SS, POTS, PVACS, Lyme: THERAPEUTIC TEST AND FIRST TREATMENT REGIME, WITH FIBRINOLYTICS AND FAMOTIDINE FOR PATIENTS WITH CHRONIC FATIGUE AND/OR PAIN TO...
  5. Bansaw

    Acetylcholine - How do POTS sufferers maintain good levels of it ?

    As a POTS sufferer I am trying to maintain a good level of acetylcholine to help boost cognitive function. I've found Acetyl-l-Carnitine plus a source of choline to be really helpful. However, my body seems to have developed a tolerance for it, even though I do 3 days on, 3 days off to avoid...
  6. R

    M.E./POTS - Treatments, medications, protocols to increase fluid retention, hydration and blood volume

    Not another thread from me complaining about my ongoing thirst, frequent urination and dehydration....but at this point I am certain my general symptoms are caused by low blood volume or some for of autonomic dysfunction that causes fluid loss and low blood volume. Call my condition M.E./CFS or...
  7. SWAlexander

    Persistent Antiphospholipid Antibodies, Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome and Post-COVID Syndrome: 1 Year On

    Abstract This is the first case report of a patient with post-COVID-19 postural orthostatic tachycardia syndrome (POTS) with multiple persistent antiphospholipid antibody (aPL)-positivity more than a year after illness onset who also meets Global Consensus-2 criteria for mast cell activation...
  8. M

    Should blood volume be considered when interpreting test results?

    This is very much a layman’s question. I’ve read that blood volumes in ME/CFS patients with POTS can be substantially lower than normal. I would like to know whether reduced blood volume directly reduces the effective “dose” of agents that are carried in the bloodstream, such as thyroid...
  9. SWAlexander

    Mast Cell Activation Syndrome (MCAS)

    Mast cells are found throughout the body and play a complex and critical role in immune response and keeping people healthy. However, when these cells become altered or activate inappropriately to specific triggers, they can create symptoms throughout the body. While mast cell activation...
  10. I

    Link between POTS, MCAS and CFS - Innate inflammation in response to an antigen..t-cell exhaustion's role?

    31:00 onwards Dr Grubb explains which autoantibodies are found in POTS and suggests they are driven firstly by the innate immune system, including mast cell mediators and other cytokines, which then triggers the adaptive immune system to make autoantibodies . He argues it can't be coincidence...
  11. I


    Hi, does anyone know if there is anywhere in the UK that offers IVIG privately? I'm looking to try it out as a POTS treatment which seems to be autoimmune in my case. It seems it is only offered on the NHS for immune deficiency and, whilst I know i'm immune deficient (low white blood cells and...
  12. 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...
  13. SWAlexander

    Should There be an Increased Focus on Lipedema, the Lymphatic System, and Adipose Tissue Fibrosis in Ehlers-Danlos Syndrome, Fibromyalgia and ME/CFS?

    Article Along with fatigue and nausea, pain has been one of the defining symptoms of my daughter’s illness. After she was diagnosed in 2018-2019 at age 14-15 with hypermobile Ehlers-Danlos syndrome (EDS), chronic fatigue syndrome (ME/CFS), craniocervical instability, Chiari malformation, occult...
  14. Woof!

    Smile if you have air hunger, POTS or a similar issue!

    Hi all! For every time you longed for a non-drug, no-side-effects, zero-cost way to take back a little more of your life and not pitch forward when you try to stand and not feel starved for life-sustaining oxygen... try smiling. No, I'm not crazy - this really works, and it has significantly...
  15. SNT Gatchaman

    Comparison of the Active Sitting Test and Head-Up Tilt Test for Diagnosis of POTS in Children and Adolescents (Cai et al, 2021)

    Comparison of the Active Sitting Test and Head-Up Tilt Test for Diagnosis of Postural Tachycardia Syndrome in Children and Adolescents (Cai et al, 2021) Hong Cai, Shuo Wang, Runmei Zou, Ping Liu, Fang Li, Yuwen Wang, Cheng Wang https://www.frontiersin.org/articles/10.3389/fped.2021.691390/full...
  16. SWAlexander

    Dr. Lawrence B. Afrin, MD, Immunology and Allergy: Mast Cell 101

    This 1-hour lecture is a well spend time for everyone still searching for answers.
  17. nerd

    Cerebral blood flow remains reduced after tilt testing in myalgic encephalomyelitis/chronic fatigue syndrome patients

    Published: 23 September 2021 Authors: C. Linda M.C. van Campen, Peter C. Rowe, Frans C. Visser doi: 10.1016/j.cnp.2021.09.001 Highlights Abstract
  18. frozenborderline

    A radical proposal or two for ME/CFS treatment. Based on similarities btwn this and sepsis/shock

    So I agree with david bell's work about low blood volume in ME/CFS and also how the disease resembles a less emergent, slower sepsis or septic/hyoovolemic shock with adaptations that make it barely livable. Not just low blood volume, there is often high Lactate especially after activity, and...
  19. C

    Unrelenting malaise and POTS

    Hello, I hope this is the right place to post my question. I fell ill in March 2020 with what seemed to be a virus and I have not recovered. Taking into account the date of the onset, long covid was initially considered. Nevertheless, all the covid tests (PCRs and antibodies) came back...
  20. 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...
  21. M

    Patients in Ontario/Canada - Can doctors refuse to accept referrals?

    Hello, I have a question for those patients that have to deal with the Ontario Health System. I have POTS, and my GP agreed to refer me to a cardiologist that specializes in that condition. He practices in a Hamilton hospital, but I do not live there. To my surprise, my request was denied by...
  22. 2

    Chasing Rainbows: Sleep Apnea, Polyneuropathy, & SIBO

    Sometimes it seems like all I ever do is chase rainbows. With each new diagnosis and corresponding treatment, supplement, diet --fill in the blank, comes a glimmer of hope for significant and lasting improvement. But it always ends up being just another small piece of the puzzle leaving me...
  23. Pyrrhus

    Deconditioning does not explain orthostatic intolerance in ME/CFS (van Campen, Rowe, and Visser, 2021)

    Deconditioning does not explain orthostatic intolerance in ME/CFS (van Campen, Rowe, and Visser, 2021) https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-021-02819-0 Excerpt: I thought the title statement should have been obvious to people by now, but apparently not...
  24. Cipher

    Circulating levels of growth hormone in postural orthostatic tachycardia syndrome (Johansson et al. 2021)

    Circulating levels of growth hormone in postural orthostatic tachycardia syndrome
  25. Aspen

    Abdominal compression tips?

    Hi folks, I’m looking for any tips you have about using abdominal compression gear to help with POTS. I recently purchased an elastic abdominal support with velcro closure, and while I love the effects of abdominal compression in general I’m having lots of trouble with the gear itself. The...
  26. M

    Post-Covid POTS and alpha-1 adrenergic AABs (G-Protein receptors)

    A couple of weeks after I contracted Covid, I developed symptoms that resemble Hyperadrenergic POTS, which have persisted for the past ~10.5 months. I went for a POTS panel, and ended having elevated levels for * Alpha-1 Adrenergic AABs As well as at risk for * AT1R AABs These are not too...
  27. W

    2-day neurocognitive testing to measure cognitive crash?

    We're trying to justify treatment to insurance, but a standard 2-day exercise test doesn't get at my son's primary functional issues. His key items are the fatigue, anxiety, intractable headache, brain fog, bad sleep ... AND the neurocognitive/emotional crash he has after cognitive/emotional...
  28. Muon

    Is POTS a central nervous system disorder? (Blitshteyn, 2021)

    Is postural orthostatic tachycardia syndrome (POTS) a central nervous system disorder? (Blitshteyn, 2021) Same thread on Dinet forum Abstract Postural orthostatic tachycardia syndrome (POTS), a disorder of the autonomic nervous system characterized by a rise in heart rate of at least 30 bpm...
  29. Muon

    Inflammatory Biomarkers in Postural Orthostatic Tachycardia Syndrome with Elevated G-Protein-Coupled Receptor Autoantibodies (Gunning et al., 2021)

    Inflammatory Biomarkers in Postural Orthostatic Tachycardia Syndrome with Elevated G-Protein-Coupled Receptor Autoantibodies (Published: 6 February 2021 ) Abstract A growing body of evidence suggests that postural orthostatic tachycardia syndrome (POTS) may be an autoimmune disorder. We have...
  30. frozenborderline

    Keeping a master list of all abnormal results in my case

    Starting now and off the top of my head. I will have a caregiver go back to the actual documents to find details as they come up. For now , however, I will post that something is out of range without specific number as I'm going from memory. Abnormal Clivo axial angle, on two separate...