Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Summary Review: Dysfunctional Autonomic Function in CFS

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Janet Dafoe (Rose49), Feb 5, 2018.

  1. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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  2. Countrygirl

    Countrygirl Senior Member

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    Just throwing one other factor into the mix: autonomic dysreflexia, which The Hummingbird's site claims is found in ME. https://en.wikipedia.org/wiki/Autonomic_dysreflexia. It is also a feature of MS.

    As I have mentioned on another thread, after a number of bouts of what has been diagnosed as 'Malignant Hypertension' following many, many years of OI resulting in previously extremely low BP, I was told by Prof Pinching a few years ago that the abrupt spikes in BP in ME are due to autonomic problems and allowing it to be treated with the usual hypertensives would only serve to exacerbate the problem. I spoke with one of our very, very few UK ME specialists last year and he said some of his very long term ME patients had also developed this dangerous aburpt high spiking BP. Only last week I found this being refered to as autonomic hypereflexia.

    Having ME however, it is not posssible to get this investigated as the local hospital say they won't allow investigations in patients who have an ME diagnosis.

    Edited to add that the abrupt spiking is to 250/135 . Standing now makes the BP rise to 225/125, whereas before it would plummet to about 60/50 both accompanied by tachycardia.
     
    Last edited: Feb 5, 2018
  3. Learner1

    Learner1 Professional Patient

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    The description of the nervous system was very clear.

    The first study made me wonder if the patients actually had ME/CFS - ability to tolerate 25 minutes of sustained aerobic exercise?? Can the results accurately be extrapolated to those of us who can't?

    Then the conclusion said no drugs could help, which doesn't seem to be the case. I had dysautonomia testing with a neurologist this past week, who says he tries Mestinon, mididrine, beta blockers and Florinef with patients.

    Lastly, a subset of us experience increases in BP and heart rate, which there is a lack of good information on what to do about. Most of the info seems to be focused on low BP. My high BP varies from quite high to normal, is positional, and 4 high blood pressure medications haven't done much, but it's not the huge spiking described in @Countygirl 's article.

    Would like to know more.
     
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