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remember

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Reply with quote  #1 
As some of you might know that the only research going on for finding treatments for hyperacusis is the Hyperacusis Research Limited. Their page is: http://hyperacusisresearch.org/?view=featured
It's very important that we all support researchers the best we can and in this point it means donating money to research. You can do it here: http://hyperacusisresearch.org/get-involved/make-a-donation.html 
So if you are hyperacusis sufferer please donate money to them and encourage other to do it also (relatives, partners etc.). With proper funding researcher can fully focus on the research and it speeds their work. The more money we can get to them the faster we can expect to have results.

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interstellardaydreamer

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Reply with quote  #2 
THIS PLACE DOES ANIMAL TESTING. Completely sick. They've even painfully deafened rats with blasting sound and everything.
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interstellardaydreamer

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Reply with quote  #3 
Do not give them your money (like you were actually planning on it). Do not fund their sick research
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remember

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Reply with quote  #4 
I think that animal testing is necessary sometimes. 

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interstellardaydreamer

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Reply with quote  #5 
Do you think it would ever be necessary for someone to intentionally deafen YOU for the sake of science? No, you don't, and neither do their animals feel they should be painfully deafened.
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Scott

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Reply with quote  #6 
Thanks, Remember,

I came upon your website a few months ago, and had questions about who you are. I tend to be careful about non-profits as it is tough to know their effectiveness.

How and when did HRL come about? Non of your board are doctors. What exactly are you trying to do? From what I gather, you are trying to raise funds to give grants for Hyperacusis research. Is this correct? 

What percentage of the funds you raise go to research, and what for administration?

What grants have you given so far, and what is their dollar amount?

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remember

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Reply with quote  #7 
Quote:
Originally Posted by Scott
Thanks, Remember,

I came upon your website a few months ago, and had questions about who you are. I tend to be careful about non-profits as it is tough to know their effectiveness.

How and when did HRL come about? Non of your board are doctors. What exactly are you trying to do? From what I gather, you are trying to raise funds to give grants for Hyperacusis research. Is this correct? 

What percentage of the funds you raise go to research, and what for administration?

What grants have you given so far, and what is their dollar amount?


Hi Scott,

I am not represent Hyperacusis Research I am just a hyperacusis sufferer. You can ask these questions in here: http://www.hyperacusisresearch.org/get-involved/contact-us.html 

Personally I think that it's our duty to make everything we can to help their work and in this point I think that we have two top priorities 1. get money to them as much as possible and 2. raise awareness of that research.    


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remember

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Reply with quote  #8 
The president of the Hyperacusis Research told me that getting publicity to the research is a big help. So we all have to contact our local media; newspapers, TV stations etc. to get publicity. I know that almost every country on the planet has at least one hyperacusis sufferer. So if you are for example from Iceland or from Italy please contact your local media and try to get publicity to the hyperacusis research. No one will do this for us we have to do it for our self. I will and have done this in my country. Please do this in yours[smile]  




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ontario78

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Reply with quote  #9 
From HR facebook page, their response to someone asking of having H makes you more susceptible to hearing loss

"Those with hyperacusis are not likely to suffer permanent hearing loss from a noise below 85 dB but are likely to suffer from greater ear pain, increased sound sensitivity and louder tinnitus. Hearing loss is not the only form of damage"

How I take this response is HR stance on sounds below 85 db are damaging to a person with H....what about everyone else, what do you think?

I understand depending on one's tolerances that it may increase ear pain or sensitivity, wasnt aware it would increase T except I thought only temporarily, but the way they word it, it seems to imply damage.
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Rob

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Reply with quote  #10 
"Those with hyperacusis are not likely to suffer permanent hearing loss from a noise below 85 dB but are likely to suffer from greater ear pain, increased sound sensitivity and louder tinnitus. Hearing loss is not the only form of damage" 

100% false. 

People with hyperacusis are not "likely" to suffer from ear pain.  A subset of people with hyperacusis also experience ear pain.     

There is nothing in the literature to support the view that exposure to sound below 85 dB is likely to increase the sound sensitivity of someone with hyperacusis.    

There is no evidence that people with hyperacusis who are exposed to sound below 85 dB are likely have louder tinnitus.  Tinnitus can get louder for all sorts of reasons, and it typically returns to baseline. 

There is no evidence that hyperacusis or ear pain or a tinnitus spike are forms of damage. 

Rob
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ontario78

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Reply with quote  #11 
What I don't understand about HR is they constantly ignore TRT. There is never any mention of it on their Facebook page. I think that is a diservice to their followers/sufferers. People on there I've spoken too, hadn't even heard of TRT....kinda crazy. they also ignore all.my questions..I mean what kind of organization is this? Not very helpful or supportive...why would I donate money to them when they cant even answer a simple Facebook question..
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ontario78

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Reply with quote  #12 
This was asked.to HR

."So what you are are saying is noises below 85 db are damaging and hyperacusis is damage. Is that what where your research is leading you?"

Their answer. "Yes, that is the case"
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Johnloudb

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Reply with quote  #13 
Well, if that's HRs view, then they are kind of clueless over there.

They don't mention TRT cause just like in the 20/20 piece which HR helped with, they think there is really not much you can do to treat hyperacusis and it is damage and people should protect instead risk further damage.

It's phonophobia central there, in my opinion.

Pretty sad for those fist seeking help ...

John
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remember

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Reply with quote  #14 
Quote:
Originally Posted by Rob
"Those with hyperacusis are not likely to suffer permanent hearing loss from a noise below 85 dB but are likely to suffer from greater ear pain, increased sound sensitivity and louder tinnitus. Hearing loss is not the only form of damage" 

100% false. 

People with hyperacusis are not "likely" to suffer from ear pain.  A subset of people with hyperacusis also experience ear pain.     

There is nothing in the literature to support the view that exposure to sound below 85 dB is likely to increase the sound sensitivity of someone with hyperacusis.    

There is no evidence that people with hyperacusis who are exposed to sound below 85 dB are likely have louder tinnitus.  Tinnitus can get louder for all sorts of reasons, and it typically returns to baseline. 

There is no evidence that hyperacusis or ear pain or a tinnitus spike are forms of damage. 

Rob

I have hyperacusis and I am suffering from ear pain.

You are right that there are mayby not anything in the literature about that exposure to sound below 85 dB is likely to increase the sound sensitivity of someone with hyperacusis but we have to remember that there is almost nothing in the literature about hyperacusis. That is why research is so important. Without it we cannot never know what is behind of this mysterius condition.   




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remember

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Reply with quote  #15 
Quote:
Originally Posted by ontario78
What I don't understand about HR is they constantly ignore TRT. There is never any mention of it on their Facebook page. I think that is a diservice to their followers/sufferers. People on there I've spoken too, hadn't even heard of TRT....kinda crazy. they also ignore all.my questions..I mean what kind of organization is this? Not very helpful or supportive...why would I donate money to them when they cant even answer a simple Facebook question..

I think that they should have information about TRT on their page. But on the other hand there are lots of information about trt on the net that is easy to find. For example this page and forum is dedicated to the trt. 
I think that the reason behind that they have not replied to all of your questions may be due to that they are quite busy and that the whole research is in the beginning phase. The truth about hyperacusis is that there is very little that researchers know about it, so I think that is also why they cannot answer to all the questions if they are not sure.   

I am also pretty sure that they want to dedicate their limited time to the research, not for answering questions that may not have proven answers at this moment. 

With a time and a good support research will find out what does happen in our auditory system when we got the hyperacusis and when they know there is high hopes to find a cure that works. That is why we all should join our forces and suppot them the best way we can[smile] 

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Rob

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Reply with quote  #16 
You are right that there are mayby not anything in the literature about that exposure to sound below 85 dB is likely to increase the sound sensitivity of someone with hyperacusis but we have to remember that there is almost nothing in the literature about hyperacusis.

I'm referring to the literature on hyperacusis.  There is nothing in the literature to support the views you quoted from the HR website.   

Rob 
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remember

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Reply with quote  #17 
Quote:
Originally Posted by Rob
You are right that there are mayby not anything in the literature about that exposure to sound below 85 dB is likely to increase the sound sensitivity of someone with hyperacusis but we have to remember that there is almost nothing in the literature about hyperacusis.

I'm referring to the literature on hyperacusis.  There is nothing in the literature to support the views you quoted from the HR website.   

Rob 

I have not quoted anything from HR website[wink] 

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hyperacusisresearch

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Reply with quote  #18 

We are always glad to answer any question about Hyperacusis Research.  Our focus is on researchers who are devoting efforts to understanding the mechanisms that cause the condition.  We were excited to have Professor Rich Salvi from SUNY Buffalo recently join our Scientific Advisory committee. See: http://www.hyperacusisresearch.org/learn-about-us/scientific-advisors.html
Also see our story about our visit to Professor's Salvi's lab:
http://www.hyperacusisresearch.org/explore-our-research/researchers-at-suny.html

Professor Salvi's lab is one of the few auditory research labs with extensive animal testing facilities exploring the various possible mechanisms of hyperacusis.

We spent many hours with many researchers at this year's 2014 ARO conference:
http://www.hyperacusisresearch.org/explore-our-research/hyperacusis-research.html

Professor Rich Tyler from the University of Iowa is wrapping up our Literature Review we sponsored through the Hearing Health Foundation:
http://www.hyperacusisresearch.org/explore-our-research/hyperacusis-publications.html
http://clas.uiowa.edu/comsci/people/rich-tyler

In his clinical work, Dr. Tyler uses various forms of sound therapy as described on their website:http://www.medicine.uiowa.edu/oto/research/tinnitus/

We have also spent considerable time with Professor Zeng at UC Irvine as described here:

http://www.hyperacusisresearch.org/explore-our-research/meet-researchers.html

Professor Zeng  completed interesting work on tinnitus demonstrating the benefit of a new therapeutic tool, called the “Serenade Tinnitus Treatment System.  He is also researching types of sound devices exclusively designed for hyperacusis instead of just tinnitus.

We spoke with Dr. Craig Formby from the University of Alabama at this year's ARO. We are glad to see the large funding his work has received.

In 2009, Dr Formby embarked on a $5.6 million phase-three, randomized, controlled clinical trial to evaluate the effectiveness of an innovative treatment that uses a noise-generating device, along with counseling, to alleviate the debilitating effects of tinnitus.

http://uanews.ua.edu/2009/12/ua-professor-begins-5-6-million-study-of-treatment-for-tinnitus-among-military-personnel/

Our emphasis is on funding those types of research efforts beyond sound therapy that are otherwise not getting funding.  For that effort, this year we will work with the Hearing Health Foundation to sponsor an Emerging Research Grant devoted to work that will help uncover mechanisms associated with the condition. The field of hyperacusis research is so poorly funded that we are trying to fill in small gaps in the near term that can ensure all research aspects of the condition are funded well over the next decade.

 Our effort is structured around advancing research and we do not give direct clinical advice on our site since we prefer all patients get professional help with the current treatment options.  In order to ensure patients understand what is available we have featured a story of a person who was able to make significant progress with TRT.  See the second story on the following page from Ben Rogers:

http://www.hyperacusisresearch.org/connect-with-others/share-your-story.html

If you have any additional questions, please use the Contact Us button on our site as we are not always able to keep up responses on various blog sites in a timely manner:
 http://www.hyperacusisresearch.org/get-involved/contact-us.html

Thanks for your interest.


Bryan Pollard

President

Hyperacusis Research

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Johnloudb

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Reply with quote  #19 
Lk,

It is NOT true  -

that the "Hyperacusis Network talks about nothing else ..." (except TRT)

or


 that people here have "promised a full recovery for all."

Can show you some examples of that?

There are lots of things that cause sensitivity and all are discussed here, to my knowledge ..

No Lk, I still hear of people who've had hyperacusis for years, seen doctor after doctor and never heard of TRT, let alone know that it is an effective treatment for hyperacusis and misophonia.  Hyperacusis Research FB group, Hyperacusis Ear Pain forum, and the like are not a good places to be for those trying to recover from sound sensitivity challenges! Many find the those groups demoralizing and hopeless ...  

I do agree with Pollard that people should seek out professional help.

John


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remember

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Reply with quote  #20 
For newcomers; please read this topic [smile] 
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Aplomado

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Reply with quote  #21 
I have had temporary spikes of hypearcusis from sounds below 85 decibels quite a lot.  This is why I know for a fact that this can occur at least in some people.

This is one reason I believe that the root of hyperacusis is in the brain, not the ear.  Your brain is responding to sounds in an inappropriate way... It is not dependent on "damaging" your ear.  Sounds that don't damage the ear can still ramp up the intolerance in the region of the brain that controls sound sensations.

I am one of the unlucky ones that has hyperacusis pain.

I do agree very much that the hyperacusis "research" page is very lacking in information about sound therapy.  Sound therapy has been very helpful for me, though obviously slow and imperfect.
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Cheryl_K

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Reply with quote  #22 
My experiences are amazingly similar to yours. I find that with many sounds it is the timbre, the quality, or perhaps a rough accent that will "fell" me more than the decibels. i have been working on tolerating the indiviual sounds that can bring me to my needs (or flat down on the ground), and have been able to bring some under control, so that in many instances decibel level is no longer an issue. But specific sound reactions remain. Somehow, I don't have the strength or courage yet to acclimate myself to the sounds that make me fall or cause painful implosions in my head, with accompanying severe pain--in my left ear, neck, and head--concussion headaches, they tell me. Since I also have partially cured TMD and a cervical spine that is not operable, I wonder how far I can move into the land of total recovery. So, I keep trying, and pray for the impossible, believing that even the impossible can be overcome. It just takes a little longer, and more care to keep overexposure to a minimum, progress sometimes measures by centimeters or small fractions or decibels.

What still gets me are more than ten minutes on the telephone, some telephone rings, and sudden blasts of horns from cars, buses, and espectially trucks in the street. On the other hand, I was able to listen to Pavarotti on PBS, for the first time in 9 years. I didn't listen too long, stopped before I felt a reaction, and will slowly stretch the time of exposure each time--but only when I am feeling pain free and feeling calm.

Apart from the "startle factor" which can set off a full blown set back in one fell swoop, there is also the build up of sounds--where I am tolerating normal noises for days, can shop and speak to people in the stores, and then a few days later, there has been a build-up, and everything I have been working on implodes. Back to square one  (almost--most of the time there is still some degree of progress remaining, it's just not a linear recovery."

There are days I want to give up. I realize it is the hyperresponsiveness of my primitive brain (limbic system, amygdala especially), which is involved in this syndrome. I remind myself to ride it out, try to stay cheerful, but when that is difficult, allow myself to cry. Sometimes that relieves the build up as well.

I believe that the roots of hyperacusis vary. There is more than one cause. It is not a homogenous condition, but one supercategorical catch-all for many conditions which sorta kinda maybe sound like the same thing. . I believe that there are more elegant measures alrady invented and yet to be invented, in new and more healing combinations of procedures, for both assessment and training.  Trouble is, not enough case studies to begin full scale research.

There is definitely a place for TRT, but don't neglect the ancillary, allied therapies. It's a shame so many of us cannot reach a good, qualified, well supervised therapist, and not enough of us to merit a "one stop shop" healing center.

I'm in the process of getting ready for a tag sale and trying to sell my house. I have no idea where I'm going to end up. That adds a lot of pressure, also a great contributor to the really harsch symptoms I am feeling right now. Steam showers and heating pads help.

When I'm settled again, I hope I'm not to overwhelmed so that I can get back t work, with whatever modifications I need.

Blessings to all--let's get this thing really figured out. This sharing is a very good thing.

Cheryl


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Aplomado

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Reply with quote  #23 
I would like to say also that within the last month I have started to have much better improvement with my sound therapy.  It took months before I saw more than a little improvement but now things are looking better..  I am now optimistic, Thank God.
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remember

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Reply with quote  #24 
For newcomers; please read this topic[smile]
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StringBean

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Reply with quote  #25 
Any research initiative that is unwilling to acknowledge that Tinnitus Retraining Therapy is the only truly effective, proven method to treat hyperacusis does not deserve a penny of my money. They are spreading falsehoods and empty hopes.

Until they fully understand the underlying physical mechanism that causes hyperacusis (if one does exist), TRT is the best treatment we have. And it works so well that we do not really need a physiological explanation to properly treat the disease.
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remember

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Reply with quote  #26 
Quote:
Originally Posted by StringBean
Any research initiative that is unwilling to acknowledge that Tinnitus Retraining Therapy is the only truly effective, proven method to treat hyperacusis does not deserve a penny of my money. They are spreading falsehoods and empty hopes.

Until they fully understand the underlying physical mechanism that causes hyperacusis (if one does exist), TRT is the best treatment we have. And it works so well that we do not really need a physiological explanation to properly treat the disease.

I think differently. It is very important to find out mechanism behind the hyperacusis. Once found there is possibility to find faster and better methods to treat H. There are also too much beliefs and unknowns when talking about H. I definitely cannot see how they would be "spreading falsehoods and empty hopes".   


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Neil58

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Reply with quote  #27 
I continue to be very frustrated with this forum. Once again we have an initial post with very good intentions for the purpose of trying to help. The thread takes the usual predictable detours about everything under the sun except what the post started with, the usual rantings and ravings accusing the organization of all kinds of horrendous things and then finally breaks down to the usual TRT versus anti-TRT argument. Sheez. This is why i don't routinely post or visit here anymore.

Before you go accuse Hyperacusis Research of anything, how many of you have actually talked to them, or Jastreboff, or Hazel? I have. All three. They are all approachable and their contact info is out there on the web.

Hyperacusis is not well understood, especially for Cat 4. I have talked to Bryan Pollard from H Research several times over email and find him to be very knowledgable, very open and committed to HELPING US. Dont demonize the organization that is trying to help us. No, they don't openly advertise TRT. Thats because they are looking beyond it. Jastreboff states in his book that Cat 4 patients are the most difficult to Treat, with the most unpredictable results. That says to me that more is needed beyond simple TRT. There is more to it than that. Bryan Pollard recognizes that. Unfortunately in Jastreboffs book i think he too easily dismisses people that didn't improve with simply stating that they didn't follow the protocol. Again, There is more to it than that.

Not sure i get the argument about what is or isnt in the literature relative the the 85 db mark. There are many people here and on the other forums that have temporary worsening of both H and T from sounds well below 85 db, myself included. just because its not in the literature doesn't mean that it doesn't happen. We need to listen to the patients instead of just parroting what the literature says

I think what is really needed is a modified form of TRT specifically developed for hyperacusis with cat 4 patients in mind. This would have to include guidance on the sound environment for the other 20 hrs a day and specific guidance on ear protection relative to db level or LDL. The current general guidance on when to protect or not is a good starting point, but it is not that simple.

I also think that more needs to be done looking beyond a fear based model. There is likely much more to it based on physiology not psychology.

Lets try to help each other and the researchers to figure this out instead of,the endless arguing over the intent of one word or the intent of an organization that you've never talked to....
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Cheryl_K

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Reply with quote  #28 
Hi Neil,

Just to chime in with a big YES!!! You really hit the nail(s) on the head, as you have done in earlier posts as well.

I am category 4, have no TRT within tolerable driving distance, and have put together a program based on what I have read, together with what I think I need or don't need, and what I can tolerate without going into delilitating setback. It's been 2 1/2 years. My progress is really not bad for a category 4.  I went into 3 stores Wednesday morning, two withough headphones. The 3rd one was a supermarket, wore headphones, did extra walking there just for the exercise and the sheer joy of it.  No setback. Just usual intermittent aches and pains before onset of H. Was able to funtion the rest of the day. Paced myself because it is part of my protocol, not because I had to.

That said, I wish there could be more research, especially more research on what to do with the "outliers," meaning those who do not get better, or get worse, those who cannot get to TRT, and do something(s) else. These things need to be quantified, and hopefully tweaked, so even the most insignificant (double entendre intended) among us can be helped. I am waiting for a new dawn to arise for a new sense of medical research, a new zeal for healing, so that those of us who have more than one "orphan" condition will be able to get the care we need.  I am waiting for doctors to not be afraid to recommend certain procedures because they are not covered by insurance. I am waiting for insurance to cover and courts to recognize.  I am waiting for a new age of healing. The one we have now just isn't working for too many of us.

Some of this actually exists, with other conditions, other modalities. Your post gave me hope that it is might be dawning now for hyperacusics.

There are possibilities for multi-site, multi-modal studies that can address the needs as you outline them, especially for the population of category 4, but also for all the "outliers" who do not fit into the "significant" part of the whole experimental group.  I refuse to be deemed insignificant and dismissed. Although now, it seems as if I don't have that choice.

It might be possible for each TRT patient to receive other healing modalities which can be examined using multivariate analysis.  Hopefully, it would be possible to obtain a grant, or some "angel" donations, so that more of us could receive more consistent treatment, guided more than by saving up to pay for whatever they can afford, or, as I did, reading and using both common sense, my prior knowledge, and intuition. I know I am better, but I wish I know how and why, and how to "tweak" what I've been doing.

I'd also like to see multiple experimental groups, comparing TRT to other sound therapies, music, and nothing at all, just time out from sounds to heal with gradual re-introduction, and just time out from sounds to heal with gradual re-introduction plus CBT and visualizations, mindfulness  or other forms of meditation, and/or hypnosis.

This will require a multivariate analysis formula that can account for missing variables. Not to insult any researcher's intelligence, but in a pinch I just might know of a few of the places that are doing this work with other conditions, researchers in other fields who have been using the above formulas and paradigms. And more. Much more. For years.

There is a 3-day conference in Secaucus beginning of November. It is in an almost parallel field, but might provide a clinician and/or a researcher with some ideas and new skills. A decade ago I would have been among the first of the local clinicians to sign up. It's intense, but I'm thinking. Will call them tomorrow, if only to find someone who might be able to heal me.

I so much enjoy all your posts. I hope all the posts in this strand really get someone's attention.

Best,
Cheryl
0
StringBean

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Reply with quote  #29 
I apologize for my strident remarks earlier. Any research into hyperacusis is a worthy cause.

All I can say is that I believe TRT offers the best treatment option for people suffering from H. I understand there are varying levels of decreased sound tolerance. However, the principle of re-training the brain (i.e. neuroplasticity) to accept increasingly higher volumes of sound is the same regardless of severity. I firmly believe that anyone from a 1 to a 10 can achieve the same recuperative effect from TRT. Other may disagree; such is their prerogative.

Perhaps I feel as strongly as I do because I have experienced firsthand the power of the brain to re-mold itself. But you have to beat it into submission by forcing yourself to listen to low-level pink noise for months and months. The fact that it takes 6 months to begin the process of neural re-wiring is why I believe so strongly in it. Once it begins, it cascades. And I take serious issue when people say that TRT is not grounded in scientific principles. As if Jastreboff pulled his model out of thin air. Frankly, the most effective research into hyperacusis should take into account the principles of TRT while continuing to seek an understanding of the underlying physiological cause. Ignoring a treatment method that is proven (as far as I'm concerned) as though it doesn't exist is simply wrong.

My greatest fear is that people are waiting for a magic bullet, a revolutionary breakthrough, that cures hyperacusis with some quick fix. I absolutely support anyone who is conducting research into understanding hyperacusis. Trust me, I want to know as much as possible about the disease. But the idea that we should ignore Tinnitus Retraining Therapy because it doesn't explain the physiological cause of hyperacusis is doing a major disservice to those who are suffering with the disease and who seek to help themselves.


3
Aplomado

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Posts: 711
Reply with quote  #30 
I do agree with StringBean.

I get pain from hypearcusis, not just discomfort.  I have had setbacks from extremely minor noises before.  I remember when the noise of a plastic bag crinkling hurt my ears so badly it made me cry.

I know TRT can work... I went from LDLs of 60 decibels to 105 decibels in six months!  I lived an almost normal life for three months before I had a relapse.  I have been struggling to recover for over a year since then.  I am finally making decent progress.  It took me months of sound therapy before I started to feel a bit better again... If I all goes well, I hope to be recovered again in 3+ months, given where I am and the rate of recovery.  I have also noticed that as improvements are made, recovery speeds up.

While I think all sorts of research on hyperacusis is great, this organization does seem to give very short shrift to TRT and other sound therapy.  They have sections on their front menu for earplugs, but not for therapy!  (I agree ear plugs are important in many situations, but this is really weird). 

I have corresponded with the head of this organization.  He is a good person.  He told me he does TRT, but apparently it has not been very helpful for him.  

I really wish the site gave more attention to sound therapy though.  Everyone should be encouraged to give it a careful try.
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Cheryl_K

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Reply with quote  #31 

Hi Stringbean,

I think you misread or misunderstood parts of my entry. I did not put it up there to be scolded. My concern was for the "outliers," who do not respond to TRT, and the people who recover and then relapse. There are ways to statistically tease out all the variables so that a greater understanding can be gained.

Cheryl

0
remember

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Reply with quote  #32 
Quote:
Originally Posted by Neil58
. Lets try to help each other and the researchers to figure this out instead of,the endless arguing over the intent of one word or the intent of an organization that you've never talked to....

This is what I hope[smile]

To make a monthly donation automatic just select - Make this Recurring (Monthly) from the box which comes after you click “Donate” button.

http://www.hyperacusisresearch.org/get-involved/make-a-donation.html
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DutchGuy

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Reply with quote  #33 
http://www.chat-hyperacusis.net/post/year-end-donation-to-this-network-7202967

I will end of the month, also will be a benefactor to tinnitus talk dot com. But I'm broke as h_ll now.
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DutchGuy

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Reply with quote  #34 
I will not make donations to my national door collections anmymore, since their directors are making tons of euros every year! So I will keep more money to donate to T and H networks and research.
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Cheryl_K

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Reply with quote  #35 
Hey, Dutch Guy,

Totally in agreement with you about supporting research. Only proviso, though, is making sure that research designs are on par with the best that governmental regulating organizations support. All research must be supervised by the appropriate governmental agencies, in the U.S. for example, the NIH (National Institutes for Health), and the FDA (Federal Drug Administration), which often provides supervision for studies utilizing medical devices (such as biofeedback, respiratory devices, etc., as well as medications). Groups of individual practitioners might be conducting research out of their offices and surgeries, but the top notch research is usually funded by grants which may or may not have university input, but always have supervision of governmental agencies so that results can claim more legitimacy.

I believe that these studies are in progress in one form or another, hopefully defining the various forms of hyperacusis and their correlational neurophysiological baselines. This research is so relatively new that governmental approval is still a long way off, and worse, even if approved, will meet with much resistance by the medical and pharmacological establishments.  I've already met much medical resistance, even with the paltry information that we now have.

Only the best research designs, with subjects assigned to groups in an approved manner, will ever provide legitamacy to all of the various types of "hyperacusis" that have been identified. Perhaps our conditions will one day be covered by insurance, and be given legitimacy in courts of law when "damages" are being assessed for accidents, occupational hazards, and/or need for work environment modifications or inability to return to work.

So, at the end of the year, I will be sending a small (wish it could be bigger) donation to keep this website going, as it does provide the best information and group support that I have found. I would like to thank Dan for his personal comments included in the appeal, and hope that someday soon there will be more of a remedy for Dan, and for all of us. We may be "disabled" in a very specific way, but the rest of what makes up most of us works just fine.

As things stand now, both from my own experience, and from reading so many posts from so many intelligent people who contribute to this forum, our talents are being wasted because most of us can work, but not under the conditions we had worked before.

I would love to see future research not only seeking a cure for the varied conditions we face, but also seeking vocational alternatives for those of us who still have most of our marbles intact. We need to gain legitimacy for our conditions as well as the fact that most of us can still contribute to society, if given a chance.

That's worth waiting for.

Best,
Cheryl
0
ontario78

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Posts: 186
Reply with quote  #36 
Quote:
Originally Posted by Neil58
I continue to be very frustrated with this forum. Once again we have an initial post with very good intentions for the purpose of trying to help. The thread takes the usual predictable detours about everything under the sun except what the post started with, the usual rantings and ravings accusing the organization of all kinds of horrendous things and then finally breaks down to the usual TRT versus anti-TRT argument. Sheez. This is why i don't routinely post or visit here anymore.

Before you go accuse Hyperacusis Research of anything, how many of you have actually talked to them, or Jastreboff, or Hazel? I have. All three. They are all approachable and their contact info is out there on the web.

Hyperacusis is not well understood, especially for Cat 4. I have talked to Bryan Pollard from H Research several times over email and find him to be very knowledgable, very open and committed to HELPING US. Dont demonize the organization that is trying to help us. No, they don't openly advertise TRT. Thats because they are looking beyond it. Jastreboff states in his book that Cat 4 patients are the most difficult to Treat, with the most unpredictable results. That says to me that more is needed beyond simple TRT. There is more to it than that. Bryan Pollard recognizes that. Unfortunately in Jastreboffs book i think he too easily dismisses people that didn't improve with simply stating that they didn't follow the protocol. Again, There is more to it than that.

Not sure i get the argument about what is or isnt in the literature relative the the 85 db mark. There are many people here and on the other forums that have temporary worsening of both H and T from sounds well below 85 db, myself included. just because its not in the literature doesn't mean that it doesn't happen. We need to listen to the patients instead of just parroting what the literature says

I think what is really needed is a modified form of TRT specifically developed for hyperacusis with cat 4 patients in mind. This would have to include guidance on the sound environment for the other 20 hrs a day and specific guidance on ear protection relative to db level or LDL. The current general guidance on when to protect or not is a good starting point, but it is not that simple.

I also think that more needs to be done looking beyond a fear based model. There is likely much more to it based on physiology not psychology.

Lets try to help each other and the researchers to figure this out instead of,the endless arguing over the intent of one word or the intent of an organization that you've never talked to....
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Rob

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Reply with quote  #37 

remember writes -

I have hyperacusis and I am suffering from ear pain. You are right that there are mayby not anything in the literature about that exposure to sound below 85 dB is likely to increase the sound sensitivity of someone with hyperacusis but we have to remember that there is almost nothing in the literature about hyperacusis. That is why research is so important. Without it we cannot never know what is behind of this mysterius condition.


*****
 

Remember, I also used to suffer from ear pain along with hyperacusis.  But whether you or I suffer from ear pain has nothing to do with the point I was making.  Some people with hyperacusis suffer from ear pain, but many do not.  On the HR website, they claim those with hyperacusis are likely to suffer from ear pain.  This is false.  They also claim people with hyperacusis are likely to suffer from loud tinnitus.  This is also false. 

 

Earlier, I wrote there is nothing in the literature to support these views.  Another way to put it is that these views are not supported by research.  They also lead to people being misinformed and can result in people being even more careful around sound than they otherwise would simply because they read this on the Internet and assume it is true.

 

When you write that there is almost nothing in the literature about hyperacusis, this is also false.  It is true that we have a long way to go with respect to our understanding of the mechanisms of hyperacusis.  But what you haven’t mentioned is that hyperacusis is often treatable for those who get into treatment and stick with it.

 

Rob 

4
Aplomado

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Posts: 711
Reply with quote  #38 

Well Rob, what does the lit say?

In what % of patients do they suffer from ear pain? (I do)

In what % of patients do they suffer from loud tinnitus? (fortunately, mine is not too bad)

I would like to know...

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Rob

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Reply with quote  #39 
Aplomado -

The literature indicates a small subset of people with hyperacusis suffer from ear pain.  The literature finds no connection between the volume of tinnitus and hyperacusis. 

Whether a person suffers from ear pain or loud tinnitus along with hyperacusis or not, those who get into treatment for decreased sound tolerance and stick with it can often re-establish their sound tolerance.

Rob
3
remember

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Reply with quote  #40 
Newcomers, please read this topic[smile]
1
DanMalcore

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Dan
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Reply with quote  #41 
Quote:
As some of you might know that the only research going on for finding treatments for hyperacusis is the Hyperacusis Research 


False - Hyperacusis Research/United Kingdom is the main body of research today.  It comprises the most prominent voices in the field of hyperacusis and tinnitus including:

Alain Londero, France 

Ali Danesh, USA

Antti Aarnisalo, Finland 

Arnaud Norena, France

Bart Vinck, South Africa

Damiaan Denys, Netherlands

Dario Roitman, Argentina   

Deepak Prasher, UK 

Domenico Cuda, Italy

Don McFerran, UK

Elizabeth Beach, Australia

Eric Storch, USA

James Kaltenbach, USA

Jos Eggermont, Canada 

Kaoru Ogawa, Japan

Laurence McKenna, UK

Margaret Jastreboff, USA  

Marlies Knipper, Germany

Martin Pienkowski, USA

Martin Schecklmann, Germany

Michael Tong, Hong Kong

Myriam Westcott, Australia

Nuno Trigueiros, Portugal

Paul Van de Heyning, Belgium

Pawel Jastreboff, USA

Pim van Dijk, Netherlands

Prepageran Narayanan, Malaysia 

Qiuju Wang, China

Richard Salvi, USA

Richard Tyler, USA 

     Tanit Ganz Sanchez, Brazil 

Visit this link for their most recent updates: http://hyperacusisresearch.co.uk/ResearchUpdates.html

I am thankful for any and all research being done on hyperacusis but it would be wrong to suggest or promote only one organization especially when this group is the dominant research group.  

Click on this link for their latest newsletter: http://hyperacusis.net/hyperacusis/recent+news/default.asp

[wave]Dan

__________________
"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
4
remember

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Posts: 85
Reply with quote  #42 
International conference of hyperacusis is just a conference for public and professionals, just like nymeria said. They do have some research programmes at the Royal Surrey County Hospital, but if I have understood correctly it is not similar as the hyperacusis.org is doing. When I started this topic I was not aware about UK conferences.  


1
Rob

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Reply with quote  #43 

I think Dan is responding to the statement made by the original poster that “the only research going on for finding treatments for hyperacusis is the Hyperacusis Research.” 

 

This statement is incorrect. 

 

Research for treating hyperacusis and research into other important aspects of hyperacusis goes on all over the world.  From what I can tell from the website, the only research Hyperacusis Research Limited has funded so far, which they did together with the Hearing Health Foundation, was a review of the hyperacusis literature written by Dr. Tyler and others.  The review, which was published in the American Journal of Audiology, provides "an overview of the field, and possible related areas, in the hope of facilitating future research."  The entire article can be read by going to the Hyperacusis Network home page and selecting the 'Recent News' link.    

Rob      

4
remember

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Reply with quote  #44 

This from: https://www.facebook.com/hyperacusisresearch


Hyperacusis "Roadmap to a Cure" Workshop

During this year’s ARO Ear Research conference, Hyperacusis Research sponsored a workshop to build a roadmap to find a cure for hyperacusis. The dinner event, attended by 27 people, included some of the nation’s top otology researchers such as Charles Liberman, Professor of Otology and Laryngology, Harvard Medical School; Richard Salvi, Clinical Professor of Otolaryngology, SUNY Buffalo; and Paul Fuchs, Bordley Professor and Director of Research, Otolaryngology–Head and Neck Surgery, Johns Hopkins University School of Medicine.

Bryan Pollard, President of Hyperacusis Research, kicked off the event with an overview of our nonprofit’s effort, including our fundraising and grant history. A key aspect of the mission is to connect researchers directly with those affected by the condition. To facilitate this goal, Bryan introduced four stories from hyperacusis sufferers and relatives filling in for their loved ones who were too injured to travel to tell their tales.

The heart of the event was defining the key research effort needed to develop a cure. Fourteen researchers helped develop the guide, which was presented with the details associated with each path.

Roadmap Paths

Path A: Identification of Hyperacusis Mechanisms 
Determine parts of the auditory pathways in the ear and brain responsible for hyperacusis and noise-induced pain.

Path B: Elucidation of Hyperacusis Mechanisms 
Determine the nature of abnormalities underlying hyperacusis and their cellular and molecular causes.

Path C: Development and Optimization of Therapy 
Assess the potential of intervention or treatment to diminish hyperacusis symptoms.

Path D: Determining Hyperacusis Cure 
Determine methodology for restoration of auditory system to eliminate hyperacusis.

1
remember

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Posts: 85
Reply with quote  #45 
All people with hyperacusis, please answer to this hyperacusis research survey:  

https://www.facebook.com/hyperacusisresearch/photos/a.542307605822827.1073741828.542085465845041/819886731398245/?type=1&theater
0
briann

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Posts: 141
Reply with quote  #46 
To be clear, this simple 4 question survey is to gauge participation to see if it is worth doing a complete survey so it is important for all of us to complete the brief survey using the link below. The actual survey will be done later by a Sanford Research team (with professional data analysis).

"One way you can help researchers is to help them obtain better background, symptom detail, and other medical information on hyperacusis patients in the form of survey data. We have a new opportunity to help develop a very comprehensive hyperacusis survey for this purpose. Before committing resources to this effort, we’re trying to determine likely participation interest. Can you please answer these quick 4 questions to help determine the kind of response rate we may get for a larger scale survey. Click the link below for the 4 questions:"

Direct Link:
https://www.surveymonkey.com/s/R53VG5B

Facebook page (some good stuff on there. Worth following):
https://www.facebook.com/hyperacusisresearch

Dan,

Would it be possible to send an email out to all members who have registered to this forum once the actual survey comes out? It would allow the survey to include more of those who have recovered from hyperacusis.

-Brian
0
remember

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Posts: 85
Reply with quote  #47 
Quote:
Originally Posted by briann
To be clear, this simple 4 question survey is to gauge participation to see if it is worth doing a complete survey so it is important for all of us to complete the brief survey using the link below. The actual survey will be done later by a Sanford Research team (with professional data analysis).

"One way you can help researchers is to help them obtain better background, symptom detail, and other medical information on hyperacusis patients in the form of survey data. We have a new opportunity to help develop a very comprehensive hyperacusis survey for this purpose. Before committing resources to this effort, we’re trying to determine likely participation interest. Can you please answer these quick 4 questions to help determine the kind of response rate we may get for a larger scale survey. Click the link below for the 4 questions:"

Direct Link:
https://www.surveymonkey.com/s/R53VG5B

Facebook page (some good stuff on there. Worth following):
https://www.facebook.com/hyperacusisresearch

Dan,

Would it be possible to send an email out to all members who have registered to this forum once the actual survey comes out? It would allow the survey to include more of those who have recovered from hyperacusis.

-Brian


Good news! I read that there will be bigger survey, there was enough interest[smile]
0
remember

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Posts: 85
Reply with quote  #48 
The Hyperacusis Research page has renewed. 
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