• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. S

    The Solve ME/CFS Initiiative Conference is about to start in a few minutes

    @Countrygirl are you able to watch it? I can see the screen but there is nothing happening. They are now 1 hour and 15 minutes late for the first roundtable starting 9:15 EST. I can't reach anyone at the organization either. I wonder if the livestreaming isn't working???
  2. S

    POTS relief - could it be?

    Thanks @Xander5 for telling us about your experience. Sorry to hear that it didn't help. I read also that using a device such as the Alpha Stim, which stimulates the vagus nerve when attached to the earlobes, has caused headaches and nausea. It is then recommended (by some users) to back off...
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    POTS relief - could it be?

    Thanks @Gingergrrl , I have never seen any tests written out like this before, it sounds outstanding! Lucky you that are are able to go there, I'm sure that you will feel that it is worth your travel energy. Very, very nice.
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    POTS relief - could it be?

    Thank you @Gingergrrl for your further explanation. That is so great that you got in at Stanford. Could you tell us the tests that you are taking? I'm just really curious what all they can test, and yep, totally understand about a secrecy thing. I had an appt last year with the Cleveland...
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    POTS relief - could it be?

    @Sushi , I must apologize because I just responded to your prior post without reading through all of the new posts first and I see you do address my first question about testing to some degree there. Thank you for expounding on your testing here. I am floored that you had that type of detailed...
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    POTS relief - could it be?

    @Sushi , I'm sure you have already posted on this somewhere, and if so, could you point me to it but I'm very interested to know how you knew that you didn't have an overactive sympathetic system or an underactive parasympathetic system. Did you have testing that told you this? If you...
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    POTS relief - could it be?

    @Sushi, you bring up a good point. Yes I will ask exactly that. I think they should just get me a general idea. I believe that some of the week you may actually get treatment (supplements maybe?) and then it is tweaked during the week, according to your results. I am not one to take...
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    POTS relief - could it be?

    Hey @Gingergrrl, thank you for your thoughtful comments, I appreciate the words of caution. That's terrific that you can go to a mainstream doctor/clinic and get autonomic testing with a neurologist. Mine didn't seem interested. I'd be very interested to see what tests they run. Sorry to...
  9. S

    POTS relief - could it be?

    I'm going to call and ask for an appointment! This is such a huge gamble for me. Not only financially, but we live 15 hours away by car and flying is out won't work. We would spread the driving out over 2 to 3 days but it is still hard on me. However, the real concern is how I will be able...
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    POTS relief - could it be?

    Sushi, thanks for providing that quote from Dr. Diana, I had no idea she is a forum member here.
  11. S

    POTS relief - could it be?

    I really don't know @Thinktank, they come up with individualized testing based on your past medical records, presentations, etc. They said each person is different. I did ask if there would be an exercise test, and the receptionist said probably not, only one person had one so far. Big sigh...
  12. S

    POTS relief - could it be?

    Loved the interview @kangaSue, thanks for posting. :)
  13. S

    POTS relief - could it be?

    yikes! I hope they were covered by insurance!
  14. S

    POTS relief - could it be?

    Check out this doctor, is it too good to be true? Dr. Diana Driscoll was an eye doctor and stopped practicing due to a combination of ED, POTS (and a couple other things). She has several videos on youtube about these conditions and her symptoms. She started a website called Prettyill.com at...
  15. S

    NIH Director Francis Collins on PBS Charlie Rose

    This is so great, thanks for posting!!
  16. S

    Dr. Collins wants to mend fences - my call with him

    I wonder if Dr. Ian Lipkin's study will be funded now?
  17. S

    Today, Thursday 15 Oct: Solve webinar with Dr Alan Light: New Developments in ME/CFS Research

    Yes, she mentioned Dane Cook (I believe it was in November?) but didn't catch the day if it was said.
  18. S

    Global ebook club

    Yep, @sillysocks84, that's exactly what I do. I haven't had to go to the library for over a year now. I've only had my kindle for a couple of years and love the ease of downloading to it. There are so many titles available for free on Overdrive too (as long as your library participates in it)!
  19. S

    Global ebook club

    I've just found this online book club recently. It's called OverDrive's Big Library Read, and your library has to participate in this program called OverDrive, in order for you to be guaranteed access to the book during the two weeks that it runs. Call them and ask if they participate. After...
  20. S

    Vagus Nerve Stimulation (t-VNS) using TENS (non-invasive)

    It works theoretically by resetting the ANS. I asked my god ME/CFS doc about it after Cort's article on it and she suggested that an Alpha-Stim would do a better job then a TENS unit. I asked her if I could buy one of these and try it, was there any danger? She said go ahead and play with it...
  21. S

    Dr Lerner Has Cancer.

    Oh no, such a shame. I hope he can beat it.
  22. S

    Ultima Replenisher Electrolyte Mix

    Just ordered some Ultima - thanks for the recommendations!
  23. S

    Help me choose a protein powder brand

    There is also egg protein powder.
  24. S

    Prayer Tree for March and April 2015

    This is such a beautiful idea :angel: @Gingergrrl I would love to be a branch and a root. I know Apl is half over, but really could use prayers now. If it's too late for Mar/Apl, I'd love to be on the tree for May/June. Thanks everybody!! I also usually pray for all suffering from ME/CFS...
  25. S

    Briefing on the Institute of Medicine report in Washington, D.C. --webcast March 25

    I hope that Morgan Fairchild might feel a real boost from this Briefing and go on to raise some private funding among Hollywood types and other connections. ;)
  26. S

    Briefing on the Institute of Medicine report in Washington, D.C. --webcast March 25

    Wow I thought it was really good. All the speakers were powerful within their own arena. Dr. Ellen Wright Clayton is such a great advocate for us - she truly gets it and she carries so much weight when she talks. I didn't take notes, so I can't remember all the great things said, but one of...
  27. S

    Listening to our bodies

    Yes, a world for us - with chairs everywhere we go, and benches where we can lie down. And no music playing in stores. And gluten-free, sugar-free, etc. restaurants with drive-through windows. Ahhhhh..........that would be the life! :Do_O:balloons: