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Stormy

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Reply with quote  #1 
I remember 20 years when I was inflicted with Hyperacussis/Recruitment.  I  had a young very active family.  That meant a lot of social interation all week long.  Then people would see the ear molds and ask. 

Or ask why I always entered church 20 minutes after my family and 10 minutes before.  ( The choir/music)

Then I try to explain without getting bogged down in details boring them to death.  No matter what I said.  It was Always the classic "deer in the
 headlights look" , or the look of " this guy is nuts, get me out of here".

It's like no one outside of my family could grasp the concept and I think it honestly took them a year or two.

While I am not cured but controlled fairly well, I never tell anyone anymore.

They just don't understand.


Anyone else have any better luck ?
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deafleg

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Reply with quote  #2 
have not found anyone yet.  understands.. I don't tell anyone anymore. Often just say i blew my eardrum... works much better
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debIam

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Reply with quote  #3 

Hi Stormy, Deafleg,

 

Explaining something as odd as H can be a challenge.  The symptoms can be so bizarre that it sometimes defies belief.  Think about it...if YOU did not have this would you not have a hard time believing this can happen?

 

When I told my husband that his running his hand across my hair would send me off the deep end...he clearly did not understand.  Neither did I. 

 

He does now...and I do have a great deal of support from friends and family.  When I am out in public and need to either wear my muffs or plugs I simply tell people that I have a rare hearing disorder that makes most sounds feel very uncomfortable and much louder than normal.    I have had no problems with this explanation.   IF anyone wants further info... I go into a bit more detail and sometimes find that people do relate because they themselves have some sensitivities or they know someone who does.  This allows me to expand the H universe so more folks can get help. 

 

Hope this helps.

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vimalsh

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Reply with quote  #4 

Im having severe recruitment in both the ears. any suggestion wat can I do? I am having severe tinnitus too. I am not able to venture out of my house. Life is miserable. Pl help


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Panda

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Reply with quote  #5 

When I first have them it was the hardest. It took me times to find the right doctors that under stand the cause of my symptoms. Hyperacusis and Tinnitus can cause by overexposure to loud noises, diseases, TMJ, and etc. My case the causes are most likely due to chronic tooth pain and teeth clenching (TMJ) that results in ear related muscles spasm that generates Hyperacusis and Tinnitus.

Back then when I first have the symptoms, I had been on anti-depression medications and slept close to a fan which I adjusted the distance, so the sound of the fan masking my Tinnitus and not hurting my ears. Later, I used earplugs when I went out and social with few people that support me in limited time. My symptoms usually fluctuated. I have some good days and bad days.

Since, I am very slowly getting better, about more than 2 years now, I increment outside activities little by little, still with earplugs and try realistically talk positive to myself and keep hoping for the better. This is not easy and I have been up and down. During the setbacks, I try to find something to do in my apartment. For me it has been playing video games, watching TV, and doing light exercise from a DVD with the volume setting that I am comfortable with.

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vimalsh

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Reply with quote  #6 
Friends,
I am in great dilemma. Because even im not able to talk. Leave about others. I have severe high frequency hearing loss also. Y is that nobody is able to help me out. Is this only recruitment or damage to auditory nerve. Wat could be the reason any auto immune disease or just exposure to loud noise. I have lost around 15kgs in 8 months. I am under severe depression and panic attacks. The anti depressants which i had taken had severe side effect and no benefit. Should i expose myself to normal noise or avoid totally. I can tell u my tinnitus is terrible in right ear but Left ear it seems the letters like a e or p or even the noise sparrows or squirrel is damaging. I feel like ending my life. I had asked someone for Hybrid Implant, but they say it cannot be done. I am willing to make myself available for free trial of stem cell also. The people here in India say we can try but we cannot guarantee whether stem cell  will be a success for ears. Since for ears still they have not performed on human beings

What tests should i perform. Do cochlear implant help or not? pl guide friends, im in deep trouble. Hearing and h or recr? hav deteriorated since i took part in one concert because of loud noise and because of tensions which i had. past 9 months  i am facing severe panic attacks anxiety and suicidal thougts.

Do so much of stress reason for my problems

can hypnosis help me?

i hav had success with homeo medicines few years back but no result this time

Can i have surgery

Can i have stem cell

or i have to live with this and die.



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PJ007

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Reply with quote  #7 

 

      

My 8 year old son has hyperacusis from conductive hearing loss and repeated ear infections until he was two years old.

 

I think adults with hyperacusis are good at hiding their pain while children cannot.   I think children help people understand hyperacusis because a child's pain is out loud- it comes out in behaviors that are seen as difficult like as toddlers they are crying, hitting, or biting.  When they are around five years old they can't talk, concentrate or learn  due to painful noises at school.

 

In our son's five year road to diagnosis we had to rule out many things that also caused those types of behaviors.  

 

Family, friends, school therapists,and clinicians comment that my son is miracle when they compare what he was like before and after his hyperacusis diagnosis and sound therapy.

 

We have mastered low frequency and are working on high frequency sound.

 

I believe there are many children that have not been diagnosed with hyperacusis yet from ear infection damage and conductive hearing loss. 

 

PJ

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Panda

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Reply with quote  #8 

Vimalsh,

In the beginning when I have the symptoms, a doctor had recommended me to consulate with another neurologist that uses Repeated Transcranial Magnetic Stimulation (rTMS) to treat Tinnitus that related to hearing loss. At that time, the doctor tough that my symptoms were possible relate to hearing loss, but it might not be the case since my hearing is in normal range and was very good at the beginning of my Hyperacusis symptoms. My hearing in most frequency ranges were about 0-5 Db at that time. I think the cause of my symptoms are not same as yours.

I want to point out other approaches that are less aggressive than implants or under experimental stem cell such as Neuromonics, Tinnitus Retraining Therapy (TRT), or Repeated Transcranial Magnetic Stimulation (rTMS). I am not knowledgeable in these subjects. I am suggesting consulate with your doctor about other types of anti-depression and taking magnesium as daily supplement.

Don't lose hope!

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vimalsh

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Reply with quote  #9 
I am trying meditation today. Also please let me knw if widex hearing aids with linear frequency transposition and noise compression will help. Bcos i had a bad experience with one hearing aid. I feel if the ear canal is totally blocked then only noise compression will be effective othewise recruiting ears will damage a lot. Pl guide. Wat abt experimentalSTEM CELL ?

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vimalsh

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Reply with quote  #10 
dear friends
new hope
Vitro Develops Novel Stem Cell Technology for Use in Treatment of Hearing Loss PDF Print E-mail
GOLDEN, Colo., Oct 04, 2011 (BUSINESS WIRE) -- Vitro Diagnostics, Inc. announced development of technical advancements with application to treatment of hearing loss in animals and human through commercialization of a variety of stem cell products to prevent, reverse and restore hearing in cases of hearing loss.

Hearing reduction or loss is estimated to affect approximately 22 to 36 million individuals globally. Effective treatments of this condition thus represent a multi-billion dollar market that is expected to increase as the population ages. Hearing loss or reduction can occur by several causes including environmental exposure to excessive sound and it is commonly associated with aging. This market is primarily served by providers of digital and analog hearing aids. Digital devices provide improved hearing enhancement to users at increased cost. A predominant cause of hearing loss is presbycusis, a condition thought to result from degeneration of hair cells and other structures in the inner ear that through signaling to the auditory nerve, result in the auditory perceptions underlying hearing.

Vitro's therapeutic products include molecular compositions to promote, maintain and restore inner ear hair cells and related structures together with adult stem cell transplantation to restore hearing loss. Vitro's intellectual property has application to hearing restoration and prevention of hearing loss through a series of products envisioned to provide various treatment options for hearing loss. Vitro's discoveries may lead to new pharmaceutical agents that stimulate activation of native adult stem cells to regenerate inner ear hair cells, together with other cells derived from adult stem cells, without the necessity of stem cell transplantation. Recombinant cytokines including erythropoietin and granulocyte colony stimulating factor are now widely used for therapeutic activation of the hematopoietic stem cell system for treatment of adverse effects of chemotherapy and represent major products of the biotechnology industry.

Vitro has developed other proprietary technology related to stem cell products and technology with broad application to various areas in medical research and therapy. Modern stem cell technology is rapidly evolving and holds promise to revolutionize medicine by allowing replacement of any type of cell within the human body. Diseases characterized by cellular degeneration, including Alzheimer's disease, cardiovascular disease, heart attack, stroke, diabetes, spinal cord injury, acute and chronic kidney failure, hearing loss, macular degeneration and several other disorders may be treatable through the development and further commercialization of stem cell technology.

While the research and use of human embryonic stem cells is highly contentious and ethically controversial, Vitro's stem cell technology is based on adult human stem cells that are derived without sacrifice of embryos needed to generate embryonic stem cells. Transplantation of adult stem cells, derived from various tissues including bone marrow, has been used for the past fifty years to treat leukemia, lymphoma and other blood disorders and is now a widely available treatment option for several forms of blood cancer and autoimmune diseases. New developments in stem cell technology, including Vitro's patent-pending technology, are leading the way to novel technologies using adult stem cells to provide the benefits of embryonic stem cells including the ability to differentiate into any cell of the body. This occurs through reprogramming of adult cells to become functionally equivalent to embryonic stem cells. Such technology eliminates the basis of the current ethical, religious and political issues associated with the use of embryonic stem cells while capturing their clinical advantages. The Company is seeking appropriate partnerships to commercialize its stem cell products related to treatment of hearing loss.

About Vitro Diagnostics, Inc.

Vitro Diagnostics, Inc. owns US patents for production of FSH, immortalization of pituitary cells, and a cell line that produces beta islets for use in treatment of diabetes. Vitro also owns a pending international patent for generation of pluripotent stem cells. Vitro's mission is "Harnessing the Power of Cells(TM)" for the advancement of regenerative medicine to its full potential. Vitro operates within a modern biotechnology manufacturing, R&D and corporate facility in Golden, Colorado. Vitro manufactures and sells "Tools for Stem Cell and Drug Development(TM)", including human mesenchymal stem cells and derivatives, optimized media for stem cell self-renewal and lineage-specific differentiation. Vitro recently formed a strategic alliance with HemoGenix(R), Inc. to jointly manufacture and distribute LUMENESC(TM) and LumiSTEM(TM) quantitative assays for determination of stem cell quality, potency and response to toxic agents.

Safe Harbor Statement

Certain statements contained herein and subsequent statements made by and on behalf of the Company, whether oral or written may contain "forward-looking statements" within the meaning of the Private Securities Litigation Reform Act of 1995. Such forward looking statements are identified by words such as "intends," "anticipates," "believes," "expects" and "hopes" and include, without limitation, statements regarding the Company's plan of business operations, product research and development activities, potential contractual arrangements, receipt of working capital, anticipated revenues and related expenditures. Factors that could cause actual results to differ materially include, among others, acceptability of the Company's products in the market place, general economic conditions, receipt of additional working capital, the overall state of the biotechnology industry and other factors set forth in the Company's filings with the Securities and Exchange Commission. Most of these factors are outside the control of the Company. Investors are cautioned not to put undue reliance on forward-looking statements. Except as otherwise required by applicable securities statutes or regulations, the Company disclaims any intent or obligation to update publicly these forward looking statements, whether as a result of new information, future events or otherwise.

 




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Febrele

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Reply with quote  #11 

Wow! Thanks for the article!

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Panda

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Reply with quote  #12 
Adult Stem Cell might look promising in many fields and in my opinion might take awhile to get it right, here is one case on youtube related to hearing loss awhile ago.  The video doesn't mention that Chloe, who suffers from hearing loss has Hyperacusis or Tinnitus.  The company is RNL BIO Co., Ltd, South Korea.

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Stormy

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Reply with quote  #13 
Vimalish - thanks for sharing that article.

New hope indeed.
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Febrele

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Reply with quote  #14 
I guess in 5 to 10 years we will have some new treatment available.
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Febrele

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Reply with quote  #15 
Does anyone knows if this company is legit?

Quote:
Hearing reduction or loss is estimated to affect approximately 22 to 36 million individuals globally. Effective treatments of this condition thus represent a multi-billion dollar market that is expected to increase as the population ages. 


That's my biggest hope for the finding of new treatment and a cure... MONEY.

I do believe in human compassion, but money is a strong motivator for research.
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Stormy

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Reply with quote  #16 
You are so right about the money and research.

Afterall, they have to look after the shareholders.
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vimalsh

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Reply with quote  #17 
I think u can try the following homeo medicines

nux vomica 1m 10 pills every 2 hours

carbon sulph 30,  15 pills every one hour

china 1m  15 pills every one hour

for hyperacusis and menieres disease. I had a success with china few years back.


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vimalsh

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Reply with quote  #18 
Again I think in yoga deep breathing for one hour will be a boon to blood circulation

The food we consume does play a big role

No to salt, white bread, caffeine, alcohol and positive thinking will only help

I have been prescribed tegretol 100, one morning and one night. Since mine is also associated with a psychological problem

I m finding good sleep but lets hope for the best.

At this moment homeo medicines seem to be the best choice,only if prescribed correctly. The only thing is doctors are not able to diagnoise our problem, and ie y we are not able to stick to the right medicine

lu all. take care

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Febrele

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Reply with quote  #19 

Exercice really helps with the ear tension in my case. Probably because it releases endorphins and blood flow...

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