Wednesday, August 17, 2011

Comments of hyperacusis


One thing about writing a blog is that you get very perceptive comments. Here are a few comments on hyperacusis, thiamine and sensitivity issues. They both expand on and confirm points made in my previous post on hyperacusis. Thanks for the contributions.

Erik Johnson:
"Cindy Duehring, co-founder of the Chemical Injury Information Network and winner of the 1997 Right Livelihood Award (The alternate Nobel Prize) suffered from severe noise sensitivity. The sound of her own voice induced seizures.


Cindy Duehring made a surprising and extraordinary shift in focus during the last months or her life. From investigating chemicals, to studying mold."

Sheena:
"After having a severe relapse for 5 years and amongst other things trying a high protein, low carb diet, I ended up in the hospital unable to digest anything and with hypoglycemic symptoms. They gave me simple cars and 200 mg of thiamine. I woke the first night feeling euphorically better, put on weight and was discharged. At home I switched to an easy to digest diet but a year later I'd again deteriorated to the point where I was struggling to digest anything. So I bought myself some B1 capsules and again instantly felt better. Unfortunately no doctor has been interested in finding out what my problem with B1 is and I think there would be no chance of getting injections in the UK. I find it particularly annoying that I'm having to self treat myself with any doctor support or investigations."

Kelly:
"All drugs will do is temporarily suppress symptoms (with the exception of those that might treat a CPN or other infection). Check out RIBOFLAVIN. Works with B1, activates B6, is essential for proper mitochondrial function, treats seizures, tremors and above all, the deficiency of which causes extreme SENSITIVITY TO LIGHT, among many other symptoms."

Anonymous:
"Neurontin helps with noise, sleep, anxiety and some pain. Increased brain fog is the major side effect (take Lithium Orotate 3x's/day to counteract this along with NeuroProtek 4 x's/day.) Foam ear plugs at night are a godsend. But I'm the first generation of this illness and probably don't have it as badly as some."

Jim K:
"You might also look into secondary porphyria as a cause of hypersensitivity to noise, light, and sensation including pain. Intracellular pathogens associated with ME, such as chlamydia pneumoniae, as well as mitochondrial ATP dysfunction makes for inadequate ATP to complete heme production in certain cells. Incompete heme by-products, porphyrins, are highly neurotoxic and can accumulate in body tissues. Porphyrins bind with GABA receptors, the natural buffers for our nervous system, and make for inadequate inhibitory control of stimulation. The result can be increased pain, hypersensitivity to sensation and cognitive dysfunction. Sounds familiar? All common overlap with ME. It is a commonly overlooked result of ATP dysfunction."

Anonymous:
"I am familiar with the most severe type of hyperacusis - the type where you have to whisper; tiptoe in stocking feet; ban music; replace the telephone ringers with flashing lights; remove ticking clocks; eat off quiet paper plates with plastic forks; cover the window with sound-deadening padding; cover the toilet with a sleeping bag. You wrote:"Most patients suffering from hyperacusis try to protect themselves by covering themselves up with earplugs and noise blocking ear protectors." I don't think this protection is a bad thing. I look on severe hyperacusis as a brain injury, and I think it is good and necessary to protect the brain as much as possible for a period of time. I also recommend the tiny, in-ear noise producing gadgets that can be controlled by the patient. And yes it does take time to recover - maybe a couple of years - but people do recover."

Kkrizani:
"I have been taking a supplement called Benfotiamine which is a form of fat soluble thiamine for seven years. I started it because it is used for preventing damage to cells from glucose in diabetes (which I also have). Despite being fat soluble its been shown to be non-toxic in studies overseas. It stopped the neuropathy that was developing in my legs and feet. If I take it, no neuropathy, if I stop the pains starts within a week. Pretty straightforward. Here is where I order it from - they also have a good FAQ: https://www.benfotiamine.net/default. aspx"

Rebeccafromdaforums:
"I have severe ME/CFS and once experienced extreme sound sensitivity, to the point where I had to wear both earplugs and earmuffs to block the sound of water running or the hum of the refrigerator. As tested by my audiologist, my maximum sound tolerance was 30 decibels, the rustling of paper. I could eventually whisper a little with people, but doing so was difficult because I had to take out my earplugs and deal with the ambient noise of insects buzzing. Over about 2.5 years the hyperacusis did gradually go away with the help of the Modified Tinnitus Retraining Therapy, which involved graded exposure to while noise emitted by devices that look like hearing aids. The noise sensitivity alone was enough to drive me to the limits of my coping ability. The isolation twisted my soul."

6 comments:

  1. I first experienced sound sensitivity during the time I was experiencing a hypoxic brain injury from chronic carbon monoxide poisoning from an adjacent indoor parking garage and poorly vented heating furnaces. I didn't know what was happening to me back them - I would watch TV (unable to go to work) with the sound off. So for me it is symptom of low or poor oxygenation in the brain. The sensory imput is simply too much to handle so the brain protects itself from further damage by trying to dampen down auditory stimuli, among other things. At least that is how I have come to see it. Energy is always the currency and stressors wipe our ability to use what little we have.

    Brain injury can open the door for unrelenting ME/CFS or vice versa.

    Elisabeth

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  2. I reached the conclusion that my main problem was a form of CNS mediated hypoxia.
    There appeared to be a correlation of my symptoms with certain locations.
    It seemed prudent to find out what was in these location which might be responsible.
    The common denominator was a slimy black mold which I had identified: "Stachybotrys".

    Ever since then, I kep my ears hyperacusis-ically "tuned" for mold stories.. and boy!
    I got 'em in spades.

    When Cindy Duehring had ruled out all chemicals and everything else that might be continuing to exacerbate her condition, her focus switched to what was about the only thing that hadn't been accounted for.

    "When the impossible has been eliminated, whatever is left, however unlikely, must be the truth"

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  3. I had fairly bad noise sensitivity and used to wear earplugs often, or those ear-protectors worn by people working with machinery. Certain noises could reduce me to tears. However, as my health has improved (following a diagnosis of fructose malabsorption and treatment at Dr Donald Lewis' clinic in Melbourne) my noise sensitivity is now at a 'normal' level for someone my age. I still have other symptoms to some extent. And for those who are interested, I meet the Canadian Consensus Criteria (both old and new) for M.E.

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  4. Sorry for the mis-spell in my comment that you quoted. Porphyins bind with GABA receptors, not "bin" them!

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  5. Regarding the first anonymous comment listed - sorry for mis-spelling. It's Lithium Orotate rather than Lithinkum Orotate:)

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  6. I have had CFS for many years and was getting worse every year. Just this August, I thought I would not be able to work again. My physiotherapist gave me a magazine with an article about Serrapeptase in it. Since I didn't have anything to lose, I've tried it and now I'm almost as good as new after 4weeks. Totally amazing! Please, please try this natural remedy made from enzymes from silkworm cocoons. I know it probably won't cure everyone, but it works for me. I cannot stress enough the joy of getting my life back again.

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