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  1. K

    ME Association funds development of new protocol for Dysautonomia

    Dr Peter Novak calls them "orthostatic syndromes". This would be better as "orthostatic intolerance syndromes" in my opinion. I don't know whether other specialists like this term. https://pubmed.ncbi.nlm.nih.gov/27525257/
  2. K

    ME Association funds development of new protocol for Dysautonomia

    I have heard several autonomic specialists say that autonomic neuropathy is the most common form of dysautonomia. (They might in fact specify diabetic autonomic neuropathy – please forgive my aging memory.) I'm not sure that POTS is even the most common form of othostatic intolerance. We don't...
  3. K

    Idiopathic postural orthostatic tachycardia syndrome: an attenuated form of acute pandysautonomia?, 1993, Schondorf & Low

    I have read that this study from 1986 is now considered to be an early POTS study too, except they didn't call it POTS. Idiopathic hypovolemia F M Fouad, L Tadena-Thome, E L Bravo, R C Tarazi Abstract Eleven patients with orthostatic intolerance had, for no detectable reason, a marked...
  4. K

    Idiopathic postural orthostatic tachycardia syndrome: an attenuated form of acute pandysautonomia?, 1993, Schondorf & Low

    I remember hearing Satish Raj talk about how the 30bpm cut-off was decided ... unfortunately I cannot remember what he said about it. He did say that autonomic specialists are not particularly happy about it being used in the diagnostic criteria.
  5. K

    One or many labels? a longitudinal qualitative study of patients’ journey to diagnosis at a specialist NHS (PoTS) clinic 2024 Moss-Morris et al

    Old sub-editor here: "Postural orthostatic" could be considered a tautology because orthostasis (the state of being upright) is a type of posture. That is to say, if the tachycardia is orthostatic, then it's also postural. Orthostatic seems to be more specific because postural could be...
  6. K

    Mirror newspaper article on hyperparathyroidism

    I wonder whether it's possible to calculate the money that could be saved by listening carefully early on. Another patient in the story says that she had symptoms for 25 years. Not that money is the main concern, but it always helps to convince the beancounters that a different approach works...
  7. K

    Mirror newspaper article on hyperparathyroidism

    I feel that GPs sometimes don't listen to the degree of severity of a patient's problems. E.g. In this story, the GP seems to have heard "aches and pains and fatigue" vs. the patient reporting "pain all over" and severe exhaustion to the point she couldn't keep up with her 87-year-old mother.
  8. K

    Trial Report Cerebral blood flow and end-tidal CO2 predict lightheadedness during head-up tilt in patients with orthostatic intolerance, 2024, Novak

    @Turtle, I suspect the researchers chose subjects who had complained of frequent orthostatic lightheadedness so that there would be a single common symptom for the subjects to report during the testing. I am not sure how they chose the subjects in general terms, as it only says that they had...
  9. K

    Monitoring Carotid Blood Flow Using In-Ear Wearable Device During Tilt-Table Testing, 2023, Hemantkumar Tripathi MD et al

    Finally! I have been suggesting (pestering) for months for them to show a graph from someone with ME/CFS. They call it a flow index.
  10. K

    Measuring cerebral hypoperfusion with Doppler ultrasound

    @Hutan, apologies, I got my wires crossed there. It might be that people with EDS and similar have "floppy veins" leading to poor venous return but this isn't a malfunction of the ANS as you rightly point out. Please forgive my tired brain. Also, I should have been clearer that I was talking...
  11. K

    Antibody tests for Sjogen's syndrome

    Follow up question: Would prednisolone possibly change antibody levels?
  12. K

    Antibody tests for Sjogen's syndrome

    @Jonathan Edwards, that's interesting. No need to rush to have the blood test then.
  13. K

    Antibody tests for Sjogen's syndrome

    We have a possible family history of Sjogren's syndrome. My daughter is about to start taking hydroychloroquine (Plaquenil) for other reasons. Would it be sensible for her to get tested for Sjogren's antibodies now? I am presuming that a DMARD could change antibody levels, or at least might...
  14. K

    Measuring cerebral hypoperfusion with Doppler ultrasound

    I just wanted to add something that might be helpful based on my reading over the past few years. Experiencing orthostatic intolerance occasionally or mildly is a part of the human experience, just like the occasional episode of vomiting or diarrhoea is. It seems to be the price paid for being...
  15. K

    Repeating testing

    Thanks, folks, for the helpful replies. I have a horrible feeling that my daughter may need re-testing and that her specialist is going to refuse to order it. I just wanted to hear from some sensible people that re-testing is useful and even required in certain circumstances. (Unfortunately...
  16. K

    Repeating testing

    This is a general question, but I know I'll get good answers here, so I hope it's okay to ask. Is it unusual in a clinical setting to do testing unmedicated and then medicated? I'm thinking that it's not unusual if the circumstances justify it, e.g. you need to show that the medication has...
  17. K

    Measuring cerebral hypoperfusion with Doppler ultrasound

    @Jonathan Edwards, one other thing I should have mentioned is that Dr Novak has stated that cerebral hypoperfusion is the primary cause of only one condition, hypertensive-type OCHOS. These patients have orthostatic intolerance symptoms, plus what appears to be "standard" hypertension (as you...
  18. K

    Measuring cerebral hypoperfusion with Doppler ultrasound

    I'm sorry it's taken me a while to log back in and reply. There are various researchers who have reported abnormal levels of cerebral hypoperfusion in patients with orthostatic intolerance on tilt table testing, including in patient groups that have other signs that can be measured as abnormal...
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