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Webinar: "Exercise Research in POTS: It's Not Deconditioning!", Dysautonomia International, Tuesday Jan 16, 7-8pm EST

Discussion in 'Treating POTS and Orthostatic Intolerance' started by Andy, Jan 14, 2018.

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  1. Andy

    Andy Committee Member

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    Registration at https://register.gotowebinar.com/register/6995413318672605443?source=DI+FB

     
    Last edited: Jan 14, 2018
  2. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    I just got a "Webinar Full" message.

    Must be popular.
     
  3. Andy

    Andy Committee Member

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    Apparently it will be in their e-newsletter - sign up at http://bit.ly/emailDI
     
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  4. Andy

    Andy Committee Member

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    This is now available online.
     
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  5. Ryan31337

    Ryan31337 Senior Member (Voting Rights)

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    Just got round to watching this.

    Interesting talk by Dr Systrom, with some points that I don't think represent generally accepted knowledge. Important bits for me were:

    1 - A significant proportion of POTS patients will have <80% VO2Max on day 1 CPET. As so many CFS patients appear to have POTS this would call into question the assumption that day 1 CPETs are usually normal for us (mine isn't).

    2 - iCPET on these POTS patients is showing oxygen extraction issues in addition to low filling pressures, the sort of measures normally indicative of mito disease (perhaps best considered as dysfunction in this case). Furthermore this is the general picture across all his syndromic patients, e.g. those with POTS, CFS, Fibro etc.

    3 - Restoring normal filling pressure with pre-exercise IV saline bolus increased VO2max substantially - taking into account a slight performance hit from dilutional anemia.

    4 - Mestinon (Pyridostigmine) also increases VO2Max significantly and is very strongly recommended, with plans for a blinded study to prove this point. Mestinon has no known mechanism to increase blood volume unlike the saline bolus, so the assumption is that it must be increasing venous return. I may have the facts mixed up here but I don't think iCPETs were generally repeated after Mestinon, rather they did a non-maximal, non-invasive CPET to look for improvement. If that was the case I imagine they couldn't say categorically that Mestinon improved filling pressure but that would be the assumption.

    Mestinon was on my list of things to try given the positive anecdotal reports (Jen Brea etc.), but I will definitely try and get some now...

    Ryan
     

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