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hyperacusis specialist

Discussion in 'General ME/CFS Discussion' started by candie, Jan 12, 2014.

  1. candie

    candie

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    Lancaster, Pa
    along with severe ME is the astounding symptom of hyperacusis, an intolerence to any noise. i'm wondering if anyone has had a loved one with this symptom, and if you did, how did you take care of it, please. Very thankful for any info, any at all
    WillowJ likes this.
  2. Hanna

    Hanna Senior Member

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    Jerusalem, Israel
    Hyperacusis is one of the symptomsI am struggling with on a daily basis, as many of us here on PR. It lead me to have a very lonely life, no social activities at all, no radio, no more music etc... Even begging from carers to whisper at time. I can't say I found some solution, just avoidance. Living in town makes it hard, especially with repetitive noise coming from air conditionners, traffic etc... Would like to help, but feel helpless myself facing this issue.
    Wayne, WillowJ, Wendy01 and 1 other person like this.
  3. rosie26

    rosie26 Senior Member

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    Hyperacusis is a brutal symptom. I went through this with no help whatsoever.

    The more noise you experience the sicker it makes you. It is quite a vicious circle, noise - inflames neurological system - worsens noise sensitivities.
    So you need as much quiet as you can get and find to stop aggravating your ME.

    I found all the emotions are quite heightened as well due to the severe sensory distress. So you need to watch how you handle your emotions as well as it can worsen symptoms as well.
    And you do feel like you are losing it mentally as the body is under tremendous distress.

    The only thing that helped me was time, quiet and rest. I wish I had known to take fish oils as that may of helped reduce inflammation in the head.
    I still get bouts of worsening hyperacusis but it is mostly more moderate now. I have had ME for 12 years.

    Tell your son to hang in there I know it is torture, but with time I found it did improve, it took years but I am much more comfortable now.

    The severe years are a horrifying onslaught of multitudes of symptoms and they all are severe.

    I hope someone else has some helpful advice.
    Last edited: Jan 13, 2014
    Hanna likes this.
  4. xchocoholic

    xchocoholic Senior Member

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    Florida
    I don't know how common this is but my severe noise intolerance vanished when I eliminated my food intolerances. I don't know which one, gluten, dairy soy ? but I suspect chronic allergy drainage was behind this. Chronic post nasal drip aggrivates all areas within range of the drainage.

    This symptom flares if I'm exposed to allergens or my ears are wet too long. Putting drops of peroxide help but it can take a few days for my ears to normalize again.

    tc . x
    Wayne likes this.
  5. Iquitos

    Iquitos Senior Member

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    Colorado
    After, or along with, PENE, hyperacusis is my most debilitating symptom. The only thing that has helped me deal with it is meditation. It doesn't actually lessen the sensitivity but helps calm down my physical reactions to noise, which are nausea, dizzyness and actually fainting and falling down if I couldn't get away from the noise.

    The only thing I have found to lessen the sensitivity is to lessen the noise stimulation for a very long time. Even if I get a little better after a lot of quiet, one episode of horrible noise will set me back to square one.
    Wendy01, Hanna and rosie26 like this.
  6. rosie26

    rosie26 Senior Member

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    Agree with this, how I experience it too.
  7. Allyson

    Allyson *****

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    Australia, Melbourne
    I have this too

    I see it as explained only by one theory

    that exess adrenaline we secrete causes it - as well as photophobia, sensitivity to smells nervousness, feeling " tired but wired" at night and maybe also our tight muscles

    adrenaline is the flight or fight hormone so dilates pupils, heightens the senses for danger tenses the muscles, decreases peripheral blood supply and many other things

    if you have POTS/OI you secrete extra adrenaline to help you stay upright ; your body is then stuck witha ll this extra adrenalin and its many side effects - all day - not good

    sorry reply was deleted 4 times now so cutting it short - see this link for the theory though and good luck
    http://forum.notcrazy.net/index.php?topic=9571.0
    Last edited: Jan 13, 2014
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  8. Allyson

    Allyson *****

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    Australia, Melbourne
    ps I carry soft earplugs everywhere and put a fether down pillow over my head to sleep - bliss

    avoind noisy crowded situation - especially if you have to stand or sit up and if it is hot that makes it all worse

    alcohol makes it worse too as it is a vasodilator

    A
    Last edited: Jan 13, 2014
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  9. Iquitos

    Iquitos Senior Member

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    Colorado
    Dr. Jamie Deckoff-Jones, who has mecfs, says it's a damaged brain gating system, whereby the normal brain filters out "background noise", stuff we don't need to pay attention to, but our brains' gating system is dysfunctional and allows everything in, overwhelming us with sensation. Noise in my case, but it can be light, smell, touch, any sensation.
    Wayne and rosie26 like this.
  10. caledonia

    caledonia

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    Cincinnati, OH, USA
    When I went through a horrible SSRI withdrawal syndrome, severe hyperacusis was one of the many symptoms. What helped take the edge off was Professional Health Products Neuromedulla Complex.

    My adrenals went from flatlined (zero) to five times higher than normal! Relora was instrumental in getting the adrenals calmed down. Of course, you would want to do an adrenal saliva test to see if your adrenals are high before taking Relora.
  11. Allyson

    Allyson *****

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    Australia, Melbourne
    that is possible but the hyper - adrenaline theory is also possible and explains so may of our symptoms that many medical professionals now believe it is one of the causative factors - we secrete extra adrenaline to vasoconstrict as , for one reason or another our blood vessels do not constrict enough as they should in the normal scheme of things - to adapt to the upright position.
    For example, adrenalin causes the muscles to tense, so having too much adrenalin I your system all day in a n effort to keep you upright could cause stiff sore muscles long term

    likewise adrenaline causes hyperacousia, photophobia, and heightened sense of smell and touch - all fight or flight responses that are great for escaping a tiger, not so great long term in the modern world.

    see this link for a - light hearted perhaps - look at how it happens
    http://bpainfreetherapy.hubpages.co...e-as-a-Genetic-Advantage-in-Ancient-Societies

    A
  12. WillowJ

    WillowJ Senior Member

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    WA, USA
    my prophylactic migraine medicine helps some with noise/light/vibration sensitivity, but not enough. I would like to find something else that helps (in addition to earplugs, getting to a quiet place)

    ps, I found a quiet hyperacusis board here:
    http://hyperacusisearpain.com/phpbb/

    and a more active one here:
    http://www.chat-hyperacusis.net/
    but that one, from the intro materials, seems to advocate pink noise therapy as a treatment, which I suppose might work for some people who got hyperacusis from an injury, but seems irrelevant to someone with a chronic illness--as the intro materials themselves say
    Last edited: Feb 1, 2014
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