The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Is there any solid research that exercise is helpful for POTS?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Chelby, Feb 1, 2018.

  1. Chelby

    Chelby

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    The Levine protocol developed from Levine's research reported a 50% drop out rate - alarm bells much!

    He also claims POTS is purely from deconditioning and not a dysautonomia at all. This makes no sense given how often POTS occurs during peak physical fitness.

    I have no reason to trust in his protocol, even if I so badly want to. Is there any solid evidence that exercise can be beneficial?
     
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  2. matt321

    matt321

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    How are you defining peak physical fitness?
     
  3. Jesse2233

    Jesse2233 Senior Member

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    Yes look up Benjamin Levine’s POTS exercise studies. He’s wrong about deconditioning causing POTS but the studies and clinical reports are compelling. Obviously though someone with mito dysfunction is going to want to address that first
     
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  4. Sushi

    Sushi Moderation Resource Albuquerque

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    I'm responding from memory but I think my memory is correct. This research was designed for astronauts who had become deconditioned from protracted periods in space. Evidently, their symptoms were very much like POTS, so....they wanted to do an exercise study but POTS patients were much more easily available than astronauts. Take from that what you will.
     
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  5. mattie

    mattie

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    If you have only POTS, yes exercise can improve you.
    If you have ME too than exercising like Levine recommendeds for POTS is impossible.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    I truly believe it depends which POTS sub-group you belong to and what is causing it. In my case, per both of my doctors, I have Autoimmune POTS (due to beta-adrenergic and other autoantibodies that cause POTS and Dysautonomia).

    This includes auto-antibodies that weaken my muscles and breathing in addition to purely causing tachycardia upon standing. So exercise would be impossible for me. I've had improvements with treatments that have decreased the autoantibodies (high dose IVIG and Rituximab) and the level that I can now stand and walk without wheelchair, and the level of overall exertion that I can now do, is significantly better than what it was pre-treatment.

    But I am not even close to being able to exercise and do not know if I ever will be.
     
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  7. notmyself

    notmyself Senior Member

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    from my experience exercise is improving pots..i measure my heart rate changes from suspine to standing..on the periods i exercise and spend less time in bed i don t even have pots, exercise is also improving my energy for 1 or 2 days ..unfortunatelly exercise is making other things worse, latelly is flu symptoms , muscle weakness and weird pain( not the normal lactic pain after exercise), extreme twiching wich is really scaring and profund insomnia...but strictly about pots, exercise would have been good for me
     
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  8. Ravn

    Ravn Senior Member

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    The impression I get from discussions about exercise in POTS-only groups is that some people find it very beneficial (though they may still have to start slow and in supine position) and others find it makes them worse.

    I suspect there are two reasons for this:

    1/ Those who get worse are misdiagnosed and really have ME as well as their POTS symptoms.
    2/ @Gingergrrl is correct about there being POTS subgroups, with some being responders and others not.

    I can't find the relevant links right now but there have been studies debunking the deconditiong theory.

    The only way to find out if you would benefit from exercise is to try - very, very carefully of course. I assume you have ME? In which case you'll be aware that most of us view any sign of PEM as a signal to slow down.
     
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