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jjtutturu

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Posts: 8
Reply with quote  #1 
Hi there,

my name is Jacob and I’m new here. I posted a cry for help earlier today on this same board. I was just wondering what people would recommend for headphones for pink noise therapy? I understand they should be on the ear and not over, and they should have an open back to them. I am trying to take matters into my own hands as I had just recently tried TRT with an audiologist out here in BC and it was unsuccessful. She was very insensitive to the therapy, the generators were far too loud and there was no counselling. I do believe the therapy was unsuccessful as she didn’t properly follow Jastreboff’s TRT method. I am ordering the text book from amazon and I’m gonna try to take my life back. So any advice on headphones would be so appreciated.

Thanks,
Jacob
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Rob

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Posts: 53
Reply with quote  #2 
Use any open air headphone that feels comfortable to you.  Use the Network's pink noise CD.  Build up to using pink noise 8 hours a day.  Set the volume at a level where you can clearly hear things in your external environment. 

I hope this helps.

Rob
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jjtutturu

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Posts: 8
Reply with quote  #3 
Rob! I’m so thankful to have your response! I’ve read your success story many times. Do you believe it is better to take matters into my own hands and use the CD or perhaps try a different TRT clinic? I just know I suffer with misophonia and phonophobia as well, and so I have this fluttering in my ear with any sound that happens. I know you had formulated your own misophonia protocol to combat your own. Is there any advice you would be willing to give me on the regimen you created for desensitization? I’m just afraid to make things worse.

Thanks,
Jacob
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Rob

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Posts: 53
Reply with quote  #4 
The pink noise CD could be helpful to you with regard to hyperacusis.  Another TRT clinician could also be helpful to you.  I would take the approach that feels instinctively right for you and commit to it.  Either approach could be effective.  The fluttering symptom you describe, which may be related to your fear and concern of sound, can also be resolved over time.  Once again, a knowledgeable clinician may be able to help you with that or you may be able to do it on your own.  For me, working with broadband noise was incredibly helpful for re-establishing my loudness discomfort levels.  The other ear-related symptoms were completely ameliorated by working with music using an approach I called the music protocol. 

Rob
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jjtutturu

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Posts: 8
Reply with quote  #5 
Hi Rob,

I spoke with a Dr. Nagler from Atlanta today and we are going to be having a Skype call on Wednesday to discuss what steps I should take. He said he thinks I should see Glynnis Tidball at St. Paul’s as he has heard many great things. I will try my best to get in I'm just concerned about the wait period. Always more waiting it seems...

Thank you so much for all your wisdom, I find it so wonderful that even after beating this terrible condition you dive back in and continue to help others. I hope I will be able to do the same. I wish to become an audiologist who can help people with this and can look at the broken 20 year old in front of them and tell them that there is a way and you can do it! I’m not there yet, but I hope one day I will be.

I am a musician, or I guess perhaps I was. I haven’t played since my hyperacusis set in due to fear. I try to listen to classical music softly. May I ask what that music protocol was? I am very intrigued! I miss it so much!!

Thanks,
Jacob
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Rob

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Posts: 53
Reply with quote  #6 
The music protocol is an approach I developed to treat my own ear pain.  You can do a search on "music protocol" on this board for more information about it.  I also wrote about it more fully in a chapter I was asked to contribute to a book on hyperacusis that was published last year. 

https://www.amazon.com/Hyperacusis-Disorders-Sound-Intolerance-Perspectives/dp/1944883282

Glynnis Tidball is an excellent choice. 

Rob
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jjtutturu

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Posts: 8
Reply with quote  #7 
Hi Rob,

The link you sent me for the book didn’t work! Do you have the title and the author? It might be because I’m in Canada!

Ok, I’ll look for the music protocol on this message board!

Thanks so much
Jacob
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Rob

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Posts: 53
Reply with quote  #8 

The link works now.  The book is called Hyperacusis and Disorders of Sound Intolerance: Clinical and Research Perspectives edited by Marc Fagelson and David Baguley.  The book is published by Plural Publishing.

https://www.pluralpublishing.com/publications/hyperacusis-and-disorders-of-sound-intolerance-clinical-and-research-perspectives

Click the link provided above, and then select the “Contents” tab to see the table of contents.  Chapter 15 is the one I wrote. 

Rob

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Aplomado

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Posts: 640
Reply with quote  #9 

Jacob- It sound like you are looking in the right places.

I have you tried sound generators?  They may be helpful also.

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jjtutturu

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Posts: 8
Reply with quote  #10 
Hi Aplomado,

I was under the care of an audiologist in Vancouver BC for some 5 months. We used sound generators yes but they were far too loud and she did not properly follow the Jastreboff model. And so I am willing to try it again under a new audiologist as I feel I need some supplemental uninteresting broadband sound to get back to normal! Have you had a positive experience with them? Or do you have an opinion?

Thanks so much,
Jacob
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SalFaz

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Posts: 11
Reply with quote  #11 
Hi,

Would you mind sharing the advice given on your consult?

I’m in month 2 and haven’t been overprotecting, getting out into a busy city everyday, and using brown noise in quiet settings, but I feel my sensitivity is getting worse (more feels loud now and more ear fullness / pressure). Worried I’m doing this all wrong!
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Aplomado

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Posts: 640
Reply with quote  #12 

Quote:
Originally Posted by jjtutturu
Hi Aplomado,

I was under the care of an audiologist in Vancouver BC for some 5 months. We used sound generators yes but they were far too loud and she did not properly follow the Jastreboff model. And so I am willing to try it again under a new audiologist as I feel I need some supplemental uninteresting broadband sound to get back to normal! Have you had a positive experience with them? Or do you have an opinion?

Thanks so much,
Jacob


My experience with sound generators has been mixed.

When I first used them, they worked beautifully, eliminating 97% of  my hyperacusis within 6 months.

However, I had a severe setback after that.

In the years since then, I have been using them, and I feel it is helpful, but it has not worked as well (I have had repeated setbacks).  I'm not a poster child for hyperacusis success, but I have experienced a lot improvement.

That is why I recommend people use them, but they aren't always a silver bullet in my experience.  I use the GH tranquil 1 sound generators.  They made my ears very sore at first, so I had to limit use and turn them way down, but I adjusted relatively rapidly to them.

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