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Sarah Tee

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    Former editor, Aussie

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  1. There was a presentation generated at the Dys Int conference by a group of autonomoc researchers who tried out the gadget with conference attendees. You can find the poster (?) on the company’s Facebook page: https://www.facebook.com/wearlumia I haven’t had the chance to study it yet. Best to open on big screen.
  2. Thank you, @Pistol, my dad is keeping an eye on me.
  3. @Mo4d93, welcome to the forum. I don’t have this symptom myself, but have seen it mentioned many times over the years. Here is a previous discussion on the topic that might be of interest: https://www.dinet.org/forums/topic/32861-bounding-pulse-issue-going-on-for-years/#comment-295447 You might find searching old posts helpful. A lot of wisdom tucked away on this forum.
  4. I’m starting my medication washout from tomorrow – reduce dosages and then cease OI medications for three weeks. Not looking forward to it. Have roasted a bunch of winter vegies and my dear dad will get me some Indian takeaway. Will sign off now until August, when I hope to report back, perhaps even with photos!
  5. Thank you, @bumpkin. I hope I will be paving the way for other Aussies!
  6. @Pistol, I’m sorry you had that pain as well as everything else. I thought this one was an interesting connection, and I can imagine someone searching “abdominal pain and fainting” one day and arriving at DINET.
  7. A case series of three patients: https://pubmed.ncbi.nlm.nih.gov/38600450/
  8. @MikeO, ugh. I am sorry you missed out on this basic measurement too. I would like to maroon doctors on a desert island with a stethoscope and a sphygmomanometer.
  9. I suppose there was publicity a few years ago when one of the Wiggles became unwell, but that was described as orthostatic intolerance.
  10. Excitement in Australia as someone mentioned dysautonomia on a TV broadcast. It was on a crappy commercial channel, in a program entitled “After COVID”. I believe it was a doctor who has also been a federal politician. I don’t think I’ll bother watching the program, but apparently she spoke about her difficulty getting a diagnosis because doctors had no knowledge of autonomic problems. Ouch. I imagine this is the first time the term dysautonomia has been mentioned on Australian TV, and possibly the first time ever in mainstream media. Even our national broadcaster, the ABC, hasn’t covered it much. A couple of small stories on Long COVID brain fog mentioning POTS has been it. I wrote to media outlets a few times about how LC is causing autonomic problems and no-one in the medical establishment has caught on, but got no reply.
  11. @akj, I’m sorry you still have 7 months to wait. I think we (and our loved ones) have all cried an ocean over the unnecessary delays in diagnosis and treatment. Just yesterday I cried over the fact that for the first 15 years of my illness not one doctor thought to take my blood pressure when I was standing up. As it happens, it wouldn’t have shown anything for me (OCHOS), but I couldn’t help but think of all the other young people who must have paraded before the selfsame doctors with orthostatic hypotension in those years.
  12. Maybe this article from 1985 has something to do with it: The preponderance of initial orthostatic hypotension in postural tachycardia syndrome
  13. PubMed search results on this topic, including some of the papers referred to in the above webinar: https://pubmed.ncbi.nlm.nih.gov/?term=initial+orthostatic+hypotension[Title]&sort=date
  14. Presented by Professor Satish Raj and Ms Nasia Sheikh, MSc https://insidescientific.com/webinar/initial-orthostatic-hypotension-dont-blink-or-you-will-miss-it/
  15. My test is booked for 25 July, a mere ten months after I first requested it. I will be doing a three-week medication washout. Not looking forward to that! The staff at the hospital seem good, but I am still concerned about my specialist being involved. I have to ascertain to what extent he will be interpreting the results, because I am afriad he will mess it up. Also, I do not know whether I will show a large enough drop in blood flow on doing a NASA lean test. My symptoms are closely linked to time of day, and although being upright makes them worse, lying down doesn’t really improve things. (Lying upside down does, but I doubt they’ll let me do that in the testing lab!) So I may need to have it done again, medicated, to show the difference. So complicated! Ten years ago, my symptoms resolved every afternoon at the same time, so I could have had the testing done morning and afternoon. Now my symptoms resolve around midnight, or not at all, so that opportunity is lost. Keep your fingers crossed for me!
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