• 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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Search results

  1. R

    Disease Mechanisms and Clonidine Treatment in Adolescent Chronic Fatigue Syndrome

    As Ive been saying all along - most of the sympathetic excess and wired feelings in CFS is compensatory for impaired cerebral autoregulation of neurovascular uncoupling. This supports that hypothesis. Recent cardiopulmonary stress tests in POTS and CFS found consistently that patients had...
  2. R

    Narrowing of pulse pressure when standing, what is it called?

    Outside a cardiac origin there are only two reasons someone would have a narrowing pulse pressure on standing (something I also get when symptomatic) - reduced venous return or hypovolemia (either absolute or from shocklike leakage of plasma into surrounding tissue). In some ways this is a...
  3. R

    Bromantane an actoprotector/adaptogen

    Interesting results. I believe Bromantane has significant gaba effects which may also account for a lethargic response. I personally find psychostimulants (Ritalin, Concerta, to a lesser extent Pseudoephedrine) to be the most helpful for me and I believe this is the dual action of increased...
  4. R

    Anyone else get temporary full remission from phenibut?

    I have a pretty similar presentation to you Deltrus and a similar response to Klonopin, Xanax and particularly phenibut. However I also get fatigue/impaired congition and dizziness which I treat with phenylephrine (10mg-20mgs per dose to a max of 60mgs) and pseudoephedrine occasionally. Its...
  5. R

    [theory]A portion of CFS sufferers have sensory gating / overstimulation issues

    Really interesting post. Large meals generally lower blood pressure to a degree. My experience is quite similar to yours although weirdly I can feel better on central stimulants that also improve venoconstriction via alpha 1 receptors (Vyvanse, Psuedoephedrine) AND central Gaba meds like...
  6. R

    Clenbuterol

    1. Clen and methylsynephrine both have very positive effects on me. 2. Clen has almost no affinity for alpha adrenoceptors and minimal norepinephrine releasing effects. It mainly stimulates beta 2 receptors which sit outside the sympathetic ganglion and when activated cause overall...
  7. R

    One Theory To Explain Them All? The Vagus Nerve Infection Hypothesis for Chronic Fatigue Syndrome -

    there is some evidence that the vagus nerve can mediate central parasympathetic withdrawal, cns vasoconstriction and reduced brain blood flow. But its very preliminary
  8. R

    One Theory To Explain Them All? The Vagus Nerve Infection Hypothesis for Chronic Fatigue Syndrome -

    If it quacks like a duck, it probably is a duck. CFS acts like an autoimmune disease - triggering stressor, fluctuating relapsing remitting course, preliminary response to b cell depletion, increased female to male ratio.
  9. R

    One Theory To Explain Them All? The Vagus Nerve Infection Hypothesis for Chronic Fatigue Syndrome -

    Actually no, nearly all etiological theories in relation to pathological small fiber neuropathies are based on genetic abnormalities and an autoimmune etiology in many (b cell mediated inflammatory response via cytokines).
  10. R

    POTS info webpage useful basics

    LOL - i picked that up pretty quick eh? i recognised your comments from another discussion. Hope you are doing well. Allyson you really are keen on the stretchy vein hypothesis. Unfortunately biospy of veins in many POTs patients are normal or have reduced elasticity rather than the opposite...
  11. R

    Latest Issue of Dysautonomia News

    Unless ofcourse the author is suggesting that these physiological mechanisms are false. But they have some peer-reviewed evidence, the argument for the psychological line has none and is primarily based on work conducted on children where they argued that parents of children with POTS who bought...
  12. R

    Latest Issue of Dysautonomia News

    The newsletter gives the recent discovery of epigenetic gene silencing in POTS a good run - with both Dr Raj and Dr Stewart commenting on it. the Mayo article is ridiculous. It details primary physiological mechanisms and then tries - with zero evidence - to suggest that somatic hypervigilence...
  13. R

    Cayenne Pepper

    Astronauts who develop OI on return to earth claim often that they crave spicy foods...
  14. R

    Hookworms: Our Friends?

    Id love to know but all the worm suppliers are ridiculously expensive.
  15. R

    Yoga

    Yoga and stretching reduce elaboration of interleukin 6 which is elevated at least in POTS. It is also interestingly released by muscles in response to exercise...
  16. R

    Tumor Necrosis Factor-alpha Inhibition Using Etanercept in Chronic Fatigue Syndrome

    Many herbs are reputed to mildly inhibit TNF alpha. Psychedelic drugs like LSD and DOM do so more potently than any other substance know apparently! They have side effects though LOL.
  17. R

    Tumor Necrosis Factor-alpha Inhibition Using Etanercept in Chronic Fatigue Syndrome

    They are using anti TNF alpha because as a 'proof of concept' that excessive elaboration of TNF alpha is the primary problem in some CFS patients. Since I also have Ankylosing Spondylitis I have been offered Humira and Simponi in the past but I was cautious about taking them at this stage. Will...
  18. R

    NF kappa B Inhibitors

    Anyone have any experience with these - some herbs are reputed to do this mildly, some new medications potently.
  19. R

    Vinpocetine For Brain Fog/Anxiety Might Not Be a Good Idea

    Doesn't it have nitric oxide effects?
  20. R

    Immuno Globulin IV

    If CFS is autoimmune then it should and possibly would help.
  21. R

    POTS info webpage useful basics

    Hi hi voner there are two papers - both under 'distal sudomotor findings in postural tachycardia' via google. I'm away from my comp but can look them up later. mestinon is one of the more helpful meds for me. Very relaxing and has done wonders for my eyes. as far as diet goes I do better on...
  22. R

    POTS info webpage useful basics

    You aren't dizzyceliac on another forum by any chance? The information being gluten ataxia?
  23. R

    Luteolin

    Thank you hip that is great information. I wonder - do you have oi and any benefit?
  24. R

    POTS or not POTS - really confused.

    You can push for a QSART test to check for neuropathy which some would suggest indicates you have neuropathic POTS.
  25. R

    POTS or not POTS - really confused.

    prettymuch everything your cardiologist said is - respectfully - incorrect. POTS can be diagnosed even if the tachycardia does not exceed 126. An increase of 30 beats per minute on orthostatis is considered diagnostic. More importnatly, ivabradine is now often prescribed for POTS because it...
  26. R

    Increase blood volume with hormesis, lose one get two

    Im surprised they arent doing it somewhere already. Emootje I always enjoy your highly informed posts.
  27. R

    POTS info webpage useful basics

    I think now days that traditional medicine will eventually have the answers but patients are so used to running their own research and investigation that they will be too busy professing their own views. I can understand many long suffering patients are jaded by past medical treatment in...
  28. R

    POTS info webpage useful basics

    I think symptoms of orthostatic intolerance are a major factor in many cases of ME/CFS. Most patients have autonomic symptoms and perhaps higher markers of central sympathetic activation and sympathetic-mediated increases in pro-inflammatory cytokines may cause many of the flu-like symptoms.
  29. R

    POTS info webpage useful basics

    There is no peer reviewed research that suggests that POTS in many or any cases is caused by junk food, toxins, food intolerances, bad bacteria, parasites, nutritional deficiencies. POTS is simply a disorder of neurovascular circulatory control. its the second most common neurovascular...
  30. R

    ME/CFS is a mast cell disorder (hypothesis)

    How are you guys going with Luteolin? It has potent antiinflammatory effects in microglial cells, reduces expression of cerebral cytokines and is an amazing anti-oxidant as well. It has so many effects so I am quite interested to hear.