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dylan

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The following information could be of great value to newcomers who have hyperacusis.  Rob and Dan both have hyperacusis and have significantly improved their tolerances to sound. If you have hyperacusis, they have been down the same road as you have.  


 

Dear Newcomers (from Rob),

The Hyperacusis Network contains some very useful information about hyperacusis symptoms and treatment options.  You will find this information by clicking on "The Hyperacusis Network" link at the top of this page, which will take you to the Home page, and then selecting the various links from the left panel of the Home page.  You will also find some very kind, thoughtful and helpful folks on the support board. 

Because you are participating on an Internet site, you will soon discover that accurate information competes for space on the support board alongside inaccurate information.  Thus, you will hear about viable treatments for hyperacusis, such as broadband pink noise therapy and Tinnitus Retraining Therapy (TRT), but you will also read about unproven treatments, such as laser therapy, as well as the overuse of earplugs, which represent the dominion of hope over common sense.
 
If you are new to this site, no matter how out-of-sorts and scared you may feel, always remember hyperacusis is treatable, and if you educate yourself and take action you will likely improve over time.  When used consistently, the broadband noise emitted by the wearable generators used in TRT, or by the pink noise CD available from the Hyperacusis Network, will help you to tolerate more and more sound over time.  Even folks with severely collapsed sound tolerance can make progress, if they only work at it.  And you can too. 
 
As a first step, it is very important to be diagnosed by a neurotologist or audiologist who is experienced in successfully diagnosing and treating hyperacusis.  Here is a list of clinicians who may be able to help.

http://www.tinnitus-pjj.com/referral.html
 
A test that can help your clinician determine whether you have hyperacusis and its extent is called a Loudness Discomfort Level (LDL) test.  LDLs are audiological measurements used to determine the sound levels that are uncomfortable to a prospective patient due to their loudness.  If you are diagnosed with hyperacusis, it is important to get into therapy with a professional with whom you feel comfortable.  Learn about tabletop devices and how they can be helpful to a hyperacusis patient even during sleep.  Learn about music and environmental sounds CDs, which can also be used as a part of therapy.  Go outside and re-involve yourself in life to the best extent you can.   
 
If you are not new to the site, and are not treating your hyperacusis, get off the fence and get busy.  When done correctly, under the guidance of a hearing healthcare professional, therapy isn't hard and doesn't hurt.  But it can take a long time, as well as knowledge, commitment and patience.  Don't wait any longer.
 
Some people join a forum like ours for support and guidance, while others come here to offer practical suggestions that will help you from Point A to Point B in treating hyperacusis.  Still others come here to work through issues that have no connection to hyperacusis.  The best way for newcomers to distinguish practical, worthwhile information about hyperacusis from happy talk and misinformation is to take the needed time to read books and articles about it and find a clinician who is knowledgeable about hyperacusis.  It could be well worth your time to read the following texts on hyperacusis.
 
- Tinnitus Retraining Therapy -- Implementing the Neurophysiological Model by Pawel J. Jastreboff and Jonathan W.P Hazell

- Hyperacusis Mechanisms, Diagnosis, and Therapies by David M. Baguley and Gerhard Andersson, 

- The chapter on hyperacusis in Tinnitus: Questions and Answers by Jack A. Vernon and Barbara Tabachnick Sanders. 
 
Here are two links to .pdf files which contain first-rate information about hyperacusis, misophonia, phonophobia and tinnitus. 

http://www.entandaudiologynews.com/assets/Uploads/Pdfs/Hyperacusis-JF13.pdf
 
 
http://www.hyperacusis.net/resources/2014jastreboffdst.pdf

  
Most hyperacusis patients are successfully treated by working with some form of broadband noise (e.g., TRT, unfiltered pink noise, analog filtered broadband pink noise).  
 
Rob




Dear Newcomers (from Dan),
 
The Hyperacusis Network consists of individuals who have a collapsed tolerance to sound.

As a network, we work at ways to improve this rare auditory phenomena called hyperacusis and educate ourselves, our families and the world around us about our condition. There are no membership fees to belong to this network and all information is held in complete confidence.  That means no email addresses or personal information is given out to anyone.

Because hyperacusis is rare, it is frequently misdiagnosed and, as patients, we are often subjected to hearing tests that could collapse our tolerances to sound even more (i.e. MRI, BAER also known as an ABR).  If the necessary precautions are taken these tests can be administered without a problem. 
 
An MRI may be necessary to rule out the possibility of an acoustic neuroma or abnormality in the ear.  If you are having an MRI done be sure you are wearing earplugs and an earmuff.  To learn how to insert earplugs properly, please watch this video:

A Brainstem Auto Evoke Response may be necessary to test the electrical activity in the cochlea and auditory pathways in the brain.  If you are having a Brainstem Auto Evoke Response test done make sure your health care professional has tested and determined your Loudness Discomfort Levels  (LDL's) before the BAER is performed.  It is likely the BAER can be performed within the limits of your LDL's so your sound tolerances are not adversely effected.
 
These are just a few helpful suggestions you should know right away.  As you navigate the waters of this website you will find many more.  The homepage of The Hyperacusis Network can be found at this link:

http://www.hyperacusis.net/

Many who find this network have been through an exhaustive search trying to find answers or even the correct term to describe their condition.  If you are one of these individuals, we are glad you found us and look forward to providing you with the information you need to recover and return to the mainstream of life.  All content, text, graphics, and information are for general informational purposes and are not intended for use as a diagnosis or treatment of a health problem or as a substitute for consulting a licensed medical professional.   If you are looking for a clinician who has been trained by Dr. Pawel Jastreboff and Dr. Jonathan Hazell to treat hyperacusis see the listing on this message board entitled "TRT Worldwide."  Travel can be difficult for hyperacusis patients who are severely sound sensitive.  To help with this you should consider using the Bose QuietComfort 2 noise cancellation headset:
 
https://www.bose.com/products/headphones/over_ear_headphones/quietcomfort-25-acoustic-noise-cancelling-headphones-apple-devices.html
 
This headset will allow you to travel in comfort. If you are not able to travel the distance to see qualified clinician, live in a country that does not have one, or are unable to afford the travel and cost of Tinnitus Retraining Therapy you might consider ordering the broadband pink noise CD from the network and follow the guideline included with the CD.  This will get you started are a sound therapy program that could be of great benefit to you.  It does not substitute or take the place of a clinicial diagnosis from a qualified hearing professional trained to administer and treat hyperacusis but it does provide you with a guideline which will likely dramatically improve your hyperacusis.  To do this, visit this link:
 
http://www.hyperacusis.net/hyperacusis/pink+noise+cd+or+ipod+shuffle/default.asp


Please feel welcome to participate on this free message board.  The people who participate are compassionate and caring.  Everyone is welcome.  Some very basic rules and guidelines are posted at the bottom of this page.  They are important and contribute to the wellness of the content posted in this forum.  Please refer to this link as a tutorial on how to join this message board:

http://www.hyperacusis.net/hyperacusis/message+board+registration/default.asp

Dan

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