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    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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pots

  1. 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...
  2. 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...
  3. mitoMAN

    Moxonidine

    Came across this interesting clinical Trail with Moxonidine. has anyone here tested Moxonidine for their POTS? Autonomic Determinants of POTS - Pilot 2 https://clinicaltrials.gov/ct2/show/NCT04140721 Detailed Description: Patients with POTS experience symptoms and an increase in heart rate≥30...
  4. mitoMAN

    GSK-126 inhibit EZH2 activity - first potential POTS cure

    GSK-126 inhibit EZH2 activity - first potential POTS cure Targeting Treatment Refractory NET by EZH2 Inhibition in Postural Tachycardia Syndrome https://www.ahajournals.org/doi/abs/10.1161/CIRCRESAHA.119.315654 Resources...
  5. ChookityPop

    Anyone resolved blood pooling?

    This is my biggest problem. If I can fix this, I think that I would be in much better shape. I have Pectus Excavatum which can mimic POTS and I think I will have to do the NUSS procedure in the hopes it can better my symptoms. I use compression, drink fluid, salt and Mestinon. I also have...
  6. ChookityPop

    Anyone cured their POTS?

    I have blood pooling and the last week I have been experiencing dizziness for the first time. Though I should note that Ive been on Mestinon for 3 days. Ive seen people reverse their pots with: Abx IVIG & Rituximab I read somewhere that doxycycline could help strengthen ligaments, could this...
  7. P

    Role of EZH2 in ME/ CFS and POTS

    Hi, I have been a silent reader of this forum for many years. During the past couple of months, I often had to think about a study from Australia. There, it is said, that POTS (at least in a subgroup) is caused by an epigenetic malfunction of the NE-Transporter. This epigenetic malfunction can...
  8. Jwarrior77

    Eosinophils and their role in Connective Tissue Disorders, Autonomic Dysfunction, and Mast Cell interactions.

    There has been increasing research on the role of eosinophils and connective tissue disorders. The eosinophils main role is fighting off parasitic infections, however they also play a huge part in allergic responses and inflammation. They release many cytotoxic and neurotoxic chemicals that...
  9. Pearshaped

    For ME - Potsies : tipps & tricks when out of house

    For those of us who can't stand for long/ have to lie down qickly WHAT are the things you take ALWAYS with you when leaving the house (for appointments or shopping or whatever) also Tricks and Tipps for living with it are very welcome. I wanted to now if someone is able to go out in a cafe...
  10. nyanko_the_sane

    Connecting the Dots with EDS in Managing Pain w/Dr. Pradeep Chopra

    These Posts Have Been Moved from: https://forums.phoenixrising.me/threads/jen-brea-on-whether-some-of-us-might-be-mis-diagnosed-eds-patients.75684/page-2 Connecting the Dots with EDS in Managing Pain w/Dr. Pradeep Chopra Not sure how this great webinar got past us, but I am posting it here...
  11. Saraswati

    Muscle issues-dehydration/electrolytes

    I don't know exactly how much I should drink so am sticking with 12 cups of water a day (very thirsty and peeing a lot) from hyper POTS/mild hyperaldosteronism. But I have been getting muscle aches/cramps (more like muscle pulling sensation) behind my knees lately. I had my sodium and potassium...
  12. M

    A little confused about POTS

    Ive been seeing a lot of people post about POTS here on PR and I am honestly a little confused about it. From my understanding it has something to do with blood volume in your body?? And how it changes/lacks change when standing??? Every time I google it I just get confused and find that...
  13. C

    Is there any solid research that exercise is helpful for POTS?

    The Levine protocol developed from Levine's research reported a 50% drop out rate - alarm bells much! He also claims POTS is purely from deconditioning and not a dysautonomia at all. This makes no sense given how often POTS occurs during peak physical fitness. I have no reason to trust in...
  14. mango

    Antiadrenergic autoimmunity in postural tachycardia syndrome (Fedorowski et al., 2016)

    Antiadrenergic autoimmunity in postural tachycardia syndrome Artur Fedorowski1,2,*,†, Hongliang Li3, Xichun Yu3, Kristi A. Koelsch3,4, Valerie M. Harris3,4, Campbell Liles3, Taylor A. Murphy3, Syed M.S. Quadri3,4, Robert Hal Scofield3,4, Richard Sutton5, Olle Melander1 and David C. Kem3,† 1...