August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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How can one find a good Doctor for Dysautonomia?

Discussion in 'ME/CFS Doctors' started by element252, Dec 14, 2017.

  1. element252

    element252

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  2. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    Sushi and Alea like this.
  3. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Dysautonomia International is a very good resource. You are more likely to get information on personal experiences with these doctors if you join the Facebook group called POTS and then search the doctor’s names on their Facebook page.
     
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  4. echobravo

    echobravo Keep searching, the answer is out there

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    Dan Neuffer has an interesting take on ANS dysregulation in ME, just read his book “CFS Unravelled”. His theory is that CFS has its cause in chronic arousal of sympathetic mode of the ANS. This causes high output of cortisol and other stress hormones. Which will eventually lead to damage in tissue, organs, glands - and dysregulation in adrenals, blood pressure (POTS), impaired digestion, impaired detox, lowered immune system, pain sensitation, blood sugar issues aso. Eventually being chronically stressed can make the body “shut down”, maybe to avoid the further damaging effect from long term cortisol etc, and metabolism will be substantially downregulated.

    He healed himself through a process he calls ANS Normalisation - the idea is to use techniques to gradually reduce chronic SNS (sympathic nervous system) arousal - a big part of this is identifying stressors (of which being sick ME is a major one, a constant source of anxiety and worry). He recommends yoga, meditation - and to be less occupied with looking for symptoms and possible solutions (a hard one!) because subconcious circuitry (amygdala?) will interpret this as a threat, and it will only activate SNS.

    Most interesting, since I came to believe since this summer that dysautonomia is a big part of ME.

    PS! I am sure this must have been discussed earlier here on the forum..Sorry for not taking the effort of looking that up. Posting this from my phone.
     
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  5. lnester7

    lnester7 Seven

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    My family has OI, I think in my case is an inappropriate reaction to adrenaline (epinephrine or neroepinephrine??? one of those) the reason I know this is because in my family, my mom and my mom (and myself) pass out with intense pain. So lets say I sprain an ankle, I would pass out as it happens (same w mom) so yoga, and all postural change crap does not work for me and actually makes me worst.
    I am on florinef, midodrine and beta blocker and I am ok with treating symptoms for now (drs think I will never get over it since it runs in my family) but I am doing great on CFS( pretty much in remission) so I am curious to see if once my CFS goes if the POTs will go or go into remission too (so far not the case).
     
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  6. element252

    element252

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    I notice stress encites symptoms in me. Any form of a lot of stress really whether physical or mental or psychological.

    Echobrave, some of what you said, sounds like what DNRS trains people to do. To calm down the limbic system or stressors that cause heightned arousal because the body overreacts to things it shouldn't and is in this constant state of 'flight or fight response.'
     
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  7. Sushi

    Sushi Moderation Resource Albuquerque

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    Here is a link to their physician list: https://www.dinet.org/physicians/
     
  8. echobravo

    echobravo Keep searching, the answer is out there

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    Yes, I think this is what Dan Neuffer is claiming - that we get stuck in a state of heightened arousal of SNS (the fight & flight mode of the ANS). The SNS and PNS (parasympathic nervous system = rest, digest & repair mode) are “mutually exclusive”, thus chronic SNS arousal will lead to damage at some point.

    DNRS is new to me, I found this resource

    https://retrainingthebrain.com

    and some recovery stories..

    http://limbicretraining.com/support/

    There is also the Gupta Programme, who targets the amygdala

    https://www.guptaprogramme.com

    Dan Neuffer has a new online training programme called “ANS Rewire”

    https://ansrewire.com

    I have not tried, nor am I affiliated with, any of these.
     
  9. element252

    element252

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    Is this why anymore form of stress brings on symptoms or makes me feel unwell? I wonder if adrenals are not functioning right as well.
     
  10. echobravo

    echobravo Keep searching, the answer is out there

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    If Neuffer and others are right it could explain why stress makes us worse. Remember that any kind of perceived or physical stress will activate the sympathetic part of the ANS. Once this gets chronic (years?) the body will at some point need to protect itself to avoid further/serious damage, and turn down metabolism (including hormones from thyroid, hpa axis).

    Neuffer is actually sceptical of supplying adrenal related hormones, because he thinks the body has downregulated them for a reason - to get out of a damaging state of chronic SNS arousal.
     

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