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  1. Ryan31337

    Physiological assessment of orthostatic intolerance in chronic fatigue syndrome, 2022, Natelson et al

    As with a lot of this OI stuff it has been explored in greater deal, often with controlled studies, in the POTS literature over the past decade or so. For example: the hypocapnia seen here is clearly not a stress response to the test. Healthy controls have been used in similar POTS studies and...
  2. Ryan31337

    Low-dose Naltrexone articles and experiences

    I was able to get a repeat prescription of the latter from GP after recommendation from Neurology consultant. It was speculative, I'd taken it upon myself to trial the drug for months at a time and felt like whilst taking it I had remission of unusual neuropathy symptoms, some of which had...
  3. Ryan31337

    Autonomic Dysfunction in Autism Spectrum Disorder (2021) Owens et al.

    Thanks for sharing. There are clinicians at KCH that offer exceptional care & awareness for autonomic dysfunction, small fibre neuropathy etc. and don't seem intimidated by the CFS legacy there. This author doesn't seem to have a history publishing with them though and seems more in with the...
  4. Ryan31337

    Ivabradine

    No, hasn't been an issue for me.
  5. Ryan31337

    Compression Stockings Improve Cardiac Output and Cerebral Blood Flow during Tilt Testing in (ME/CFS)Patients: A Randomized Crossover Trial, 2021,Rowe

    The study I linked wasn't using the sort of seamless compression garment that you roll up your body, it instead used separate bindings - much easier to put on and actually live with. There's some pics in the video presentation on that link:) N=1 but I spend most of my day wearing an abdominal...
  6. Ryan31337

    Compression Stockings Improve Cardiac Output and Cerebral Blood Flow during Tilt Testing in (ME/CFS)Patients: A Randomized Crossover Trial, 2021,Rowe

    Its a shame they didn't try abdominal binding to see if that was superior to leg compression, as found in the recent similar POTS study: https://www.s4me.info/threads/compression-garment-reduces-orthostatic-tachycardia-and-symptoms-in-patients-with-pots-2021-bourne-et-al.22415/
  7. Ryan31337

    Aphaeresis/ Apheresis (for removal of microclots)

    @SNT Gatchaman I suspect you have seen Blair Grubb's intro to this study broadcast last night? If not & for the benefit of others, it can be watched here: https://fb.watch/9Mrloo28E-/ The prior study showing the platelet storage pool deficiency & abnormal cytokine findings in a subset of POTS...
  8. Ryan31337

    Autonomic dysfunction in idiopathic hypersomnia: an overlooked association and potential management, 2021, Adra et al

    Way to confuse people (me) by using the acronym "EDS" without first noting they mean "Excessive Daytime Sleepiness" and not "Ehlers Danlos Syndrome", in relation to common POTS comorbidity! :facepalm: Otherwise it seems to get it correct that whilst POTS patients share the excessive daytime...
  9. Ryan31337

    Respiratory Physiotherapy for POTS and disordered breathing

    They've been selected for this attribute. The Panic cohort all received a prior panic attack diagnosis from psychiatry, before being referred to this study because they reported orthostasis as a known trigger for their panic attacks. The authors have then shown the hemodynamics and patterns of...
  10. Ryan31337

    Respiratory Physiotherapy for POTS and disordered breathing

    Where does it say patients were told to overbreathe? And if so, why would they tell POTS patients to increase tidal volume but not respiratory rate, but panic patients to increase both? As far as I can see the healthy control voluntary hyperventilation group were the only ones that were told to...
  11. Ryan31337

    Respiratory Physiotherapy for POTS and disordered breathing

    There are published observations going back 15+ years of a subset of POTS patients hyperventilating on orthostasis, they do not need to be told to overbreathe. This paper comes in the middle of a chain of related work, I brought it up specifically because patients tend to jump to conclusions...
  12. Ryan31337

    Respiratory Physiotherapy for POTS and disordered breathing

    There have been a number of controlled studies and publications on this topic from JM Stewart's group. This one is perhaps relevant here for the comparison between POTS, panic disorder & healthy control voluntary hyperventilation cohorts: Hemodynamic characteristics of postural...
  13. Ryan31337

    Respiratory Physiotherapy for POTS and disordered breathing

    There's a growing body of evidence to show hyperventilation is a problem for a significant minority of POTS patients. This evidence is also showing it is not related to a panic disorder, or other simplistic psychogenic explanations. Don't get caught up on the layman's understanding of the word...
  14. Ryan31337

    Use of Cardiopulmonary Stress Testing for Patients With Unexplained Dyspnea Post–Coronavirus Disease, 2021, Mancini et al

    Its a shame that the COVID gravy train seems to be open to all. I can't see much evidence here that these researchers understand this field, they've just jumped on the band wagon and came to the same naive & convenient conclusions about hyperventilation that other researchers did decades ago...
  15. Ryan31337

    Covid-19 vaccination experiences

    Had my "third primary" dose a couple of weeks ago, this time a Pfizer (first 2x were AZ). I'm due for a 4th dose, the "booster", in 6M time. This is because I take biologic immunosuppressant medication. Arm ache was the only immediate & obvious reaction, whereas I got a temperature/achy feeling...
  16. Ryan31337

    Back to the Future? Immunoglobulin Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2021, Brownlie and Speight

    As the discussion has drifted more specifically to SFN & receptor antibodies I wanted to share this video: Its a general roundup/opinion of autoimmunity involvement in POTS/SFN by Taylor Doherty MD, an immunologist/associate prof of medicine. There's a discussion of a 38 patient case study...
  17. Ryan31337

    Leg pain in neuropathic postural tachycardia syndrome is associated with altered muscle membrane properties, 2021, Rodriguez et al

    Would be interested to know if anyone here has an understanding of this point made in the paper. Specifically how that might relate to David Systrom's theories of Pyridostigmine action in SFN/POTS.
  18. Ryan31337

    Leg pain in neuropathic postural tachycardia syndrome is associated with altered muscle membrane properties, 2021, Rodriguez et al

    Useful summary & comments, @Hutan, thank you. Interesting study for me as lower leg pain was one of my primary complaints at on-set, long before other more overt POTS signs & symptoms started. I thought it interesting to note that the patients did not actually meet POTS heart rate criteria at...
  19. Ryan31337

    Leg pain in neuropathic postural tachycardia syndrome is associated with altered muscle membrane properties, 2021, Rodriguez et al

    Leg pain in neuropathic postural tachycardia syndrome is associated with altered muscle membrane properties, 2021, Rodriguez et al Abstract Purpose In neuropathic postural tachycardia syndrome, peripheral sympathetic dysfunction leads to excessive venous blood pooling during orthostasis. Up to...
  20. Ryan31337

    Salt: The paradoxical philosopher's stone of autonomic medicine

    The JACC paper I mentioned looked specifically at POTS patients that were classified hyperadrenergic, i.e. the ones prone to bouts of upright hypertension. There were no differences in blood pressure between the low salt diet and the high salt diet (18gm of salt per day!!) there either - but...
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