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Michael84

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Reply with quote  #1 
i have hyperacusis from  5 months and i m 16. I have a question about an effective hope, treatment  or cure for hyperacusis. 
Really i don't want to live my entire life with this monster.
I know there is TRT , but i m scared this treatment can't work with me because my hyperacusis is not caused by an acoustic trauma.
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Taylorslay

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Reply with quote  #2 
What caused your Hyperacusis?

I got my Hyperacusis when I was 16 from acoustic trauma. It's been nearly a year since I've gotten it. Im 17 now and turning 18 in a month. So if you need anyone to talk to whom is among your age group with H just hit me up on this forum.
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DanMalcore

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Dan
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Reply with quote  #3 
Quote:
I know there is TRT , but i m scared this treatment can't work with me because my hyperacusis is not caused by an acoustic trauma


Many of us become very troubled trying to figure out how we came down with hyperacusis.  There are many causes.  TRT currently is the most effective method to resolving decreased sound tolerance (DST) no matter what the cause - known or unknown.  Be proactive and begin sound therapy. 

[wave] Dan

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"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
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Rob

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Reply with quote  #4 

Michael84 – 

I appreciate that you don’t want to live with hyperacusis for your entire life.  You don’t need to.  Some folks with hyperacusis are cured, and many people who seek treatment for hyperacusis and stick with it, go on to live normal, productive, and happy lives.  Exposure to sound that is too loud for one’s auditory system is one of the most common ways to develop hyperacusis.  Desensitization therapy can be helpful to folks with hyperacusis whether it is caused by an acoustic trauma or not.    

There is hope.  If you get into treatment with a knowledgeable clinician, when you start to make progress you will begin to feel hopeful.  

Best of luck, Michael.  Let us know how it goes.  

Rob    

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janeygirl

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Reply with quote  #5 
There is definitely hope. When I had a hearing injury from a very loud alarm at a hotel stay for 24 hours in the middle of a snowstorm, I had no idea what had happened though in my case I knew what had happened. I didn't know what to do and somehow knew to contact The Tinnitis Association when we returned home. They sent me a packet in the mail along with a bit of information on Hyperacsis and the contact. I contacted Dan and the rest is history. I labored so long and for so many years about what to do. I knew that we had the TRT available but because insurance didn't pay for it (it would have I learned!), I didn't do it. I suffered for years and my entire life changed for the worse because of it. Veterans on this Board will remember those words of suffering but also the hope that this Board and Dan gives is beyond words. I eventually did do TRT and it was the best thing I did. I did the work, it was super easy and I also did cognitive behavioral therapy as by that time I had learned to associate all noises with "bad". I am glad I did it and life changed a lot. I still yearn for quietness and "nothing noises" so I still need to do the cognitive behavioral therapy portion of the work and probably always will be. I still don't go to super loud restaurants but I'm back to listening to music, going to movies etc. There is hope, believe me. 


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etrs

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Reply with quote  #6 
This is new! Read it all, it even mentions hyperacusis. https://www.sciencedaily.com/releases/2018/09/180912081258.htm
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AnthonyO

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Reply with quote  #7 

Thank you "michael84" for starting this important post and to "etrs" for the link to:

https://www.sciencedaily.com/releases/2018/09/180912081258.htm

SCIENCE DAILY® - Your source for the latest research news...
"Discovery of new neurons in the inner ear can lead to new therapies for hearing disorders"

I did read the story thoroughly & intently and found it to be not just only preliminary, but quite informative, realistic...and indeed...very hopeful for the futures of many....with hearing loss, recruitment, tinnitus and even complex hearing disorders, such as even hyperacusis.

I just now forwarded this link over to Mr. Bryan Pollard of the think-tank, Hyperacusis Research Group, so he might read through it as well.

Your friend,

AnthonyO
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bananacupcakes

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Reply with quote  #8 
Quote:
Originally Posted by etrs
This is new! Read it all, it even mentions hyperacusis. https://www.sciencedaily.com/releases/2018/09/180912081258.htm


Now let's wait 15-30 years to see this new knowledge applied in our everyday lives.

Don't get me wrong, this is amazing news for science and medicine in general, and for future generations in particular. I don't think we've already missed the boat, but we will be waiting at the pier for a loooong time.
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dave2

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Reply with quote  #9 
There is an interesting post on Tinnitus Talk this week in the Frequency Therapeutics FX-322 thread.

FX-322 is in Phase 2 clinical trials in the United States right now, it is a stem cell approach to regenerate damaged ear hair cells in the cochlea. Someone with hyperacusis e-mailed one of the scientists and asked if FX-322 would regenerate damage to the auditory nerve also (which some say may be more likely as a cause of H than damage to the hair cells).

The answer came back “we have some evidence to suggest the answer to that question is yes.”

Phase 2 is wrapping up now though they are still accepting patients, though the acceptance criteria for this phase are strict, apparently they have had thousands of applicants for a small number of spaces. No cost to the patients and the location is San Antonio, Texas. If Phase 2 is successful (they probably know by now but cannot share yet) hopefully Phase 3 may start soon, later this year possibly, and many of us could have a chance to gain access.

More info at the links.

https://www.alamoent.com/wp-content/uploads/2018/07/Hearing-Loss-Study.pdf

https://clinicaltrials.gov/ct2/show/NCT03616223


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Michael84

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Reply with quote  #10 

thanks all for your answers, but it's really frustrating to wait that someone say that a cure for hyperacusis has come out.
i have another question, can hyperacusis get better on its own with time?

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tonyccc

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Reply with quote  #11 
Dont worry your age is in your favour.All the stories I heard about people recovering were mainly from young people.You will get over it 
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RobC

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Reply with quote  #12 
Hello:

I want to try TRT treatment. Can someone please give details of what worked for them. For instance, listened to white or pink noise for an hour a day, raised the volume up a little each week over this amount of time, etc.
Combined with cognitive therapy, etc..

Does a person have to see an expensive Dr. and get special expensive TRT equipment or can this be done with pink noise loaded on a audio device like a ipod?

I'm having a hard time seeing the right doctors through my insurance. The last one I got routed to was not real helpful.

Rob 
San Diego

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Rob Cross
San Diego, CA
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tfw7

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Posts: 7
Reply with quote  #13 
I have a wearable sound generator (in the UK this was free under our NHS) that I wear for at least 6 hours a day.
I also have tracks downloaded on phone/mp3 player that I listen to.
I use the "speech blocker" one from this website: https://mynoise.net/NoiseMachines/whiteNoiseGenerator.php
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RobC

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Reply with quote  #14 
Thanks for your feedback. I appreciate it. 
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Rob Cross
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