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Jfasoli1

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Posts: 6
Reply with quote  #1 
Hi everyone, 

First off, for me it was 100% possible to beat this thing. I was at a point where the sound of the clumping of paper, running water, faucets, doors, voices, you name it, I was afraid of it, and so it hurt me. Ironically, a close friend of mine had it and beat it too, using the same resources. I found a therapy that worked for me and I stuck with it and I think that everybody can do the same. I really do. Here are the things that helped me personally. This will be detailed, stick with me, it's important!

A quick note!
My chosen therapy, TRT, (Tinnitus Retraining Therapy) works differently for everyone. In my opinion, it is very important to talk to the Hyperacusis and or Tinnitus specialist and decide the best way to move forward for YOU, and your needs will for sure be met through your sessions. [smile] Let's begin!

I used TRT therapy at All Ears Audiology in Ithaca, NY
http://www.allears.com/
Phone:(607) 257-3903
The audiologist/ear specialist's name is Carol Bass. She's the best!
I lived close to the building in college, and was able to do in-person visits. She also does phone calls. 

About TRT (for anyone who doesn't know):
Tinnitus Retraining Therapy is a therapy (to my knowledge similar to CBT - cognitive behavioral therapy -) in which you sit (or call in to talk) with an ear specialist/therapist who specializes in Hyperacusis and Tinnitus. The goal is to help you realize that your own anxieties make the condition worse. Once you realize this, you and the specialist figure out a plan to re-adjust you to the sounds of the real world, or to ignore the ringing. I'll get more into this below.

Hyperacusis Info:

With TRT, I sat with Carol Bass and talked about my anxieties, the godawful pain, how it made me feel and how it affected my social life, and then she provided therapy. This had mostly to do with:

1. Changing my behavioral patterns
 to become unafraid of the pain, or giving less focus to the little noises around my house, and knowing that me CHOOSING to focus on them made them hurt me. Once I gave these things less focus, which really began several months after I started, the therapy began to work. 

2. Socializing
with friends again by doing small to then longer hangouts, going to (somewhat) noisier environments over a scheduled, prolonged period of time. This might include stopping into a coffee shop, to then eventually later on going to a bar, excusing myself if I feel too uncomfortable, but then coming back in. Eventually, I got to a point over several months where I became confident and I didn't need to ever leave the coffee shop or bar. I was honest, and told my friends when we went out exactly why I'd need a 5 or 10 minute break or so. 

3. I wore white and pink noise therapy through the use of Wearable Sound Generators, (only involved in TRT if necessary). I got these at All Ears, and used them supervised by Carol, only because I willingly wanted to try them. My sound generators could do both pink and white, and the white caused me little to no discomfort. It was anxiety inducing at first, knowing there was a constant noise in my ears. For me, it became relaxing and I soon began to love it, knowing it was helping my sound sensitivity. However, Carol had me use them in small intervals through what I know as Exposure Therapy. My first day, I'd turn them on, put them in, and wear them for about a minute or so. By the end of a few weeks, I'd be comfortable with a few minutes. Over a period of 5 months or so, I was wearing them all day. They become normal, you eventually tune it out. This timing process is different for everyone. 

Quick Note about Wearable Sound Generators:
My friend who also had Hyperacusis did not need to use them. Regular TRT worked for him. 

Through my use of TRT combined with my Wearable Sound Generators, my Hyperacusis was gone in a total of 9 months or so. 

Tinnitus Info: 
TRT also helped me to ignore my Tinnitus, which I can no longer hear. This involved getting to a point where I treated it like an everyday thing, like the chair in my living room. With Carol's help, and with what seemed like a total decline in intensity over about a year, I really can't hear it anymore. For months it was loud, intense. Especially when I drank alcohol, it felt horribly loud. Now, a few years later, it's not there. I should note that on occasion the Wearable Sound Generators sometimes made the ringing louder, only when I had them turned on in my ears, but I accepted this as I knew it would help to fix my Hyperacusis. 

Earplugs:
As many might know, excessively wearing earplugs makes hyperacusis worse, because it lessens your exposure to everyday noise, which can lead to a feeling of even stronger sensitivity when you take the plugs out and you are re-exposed to everyday sounds. Your specialist can tell you the best course of action with earplugs.

However, I got custom-made plugs at Northern Dutchess in Rhinebeck, NY. They took a mold of my ear and (through a second company, you can find out who they are by giving Northern Dutchess a call, 845-876-3094) I now have perfectly shaped earplugs that fit me only, and don't increase or decrease bass or treble at concerts. I only use these at concerts or clubs, or unnecessarily loud places. I don't use them for everyday situations. 
http://www.northerndutchessent.com/

Difference between ENT and Hyperacusis and Tinnitus Specialist:
Going to a general ENT versus going to a Hyperacusis and Tinnitus specialist are two VERY different things. I went to several ENT's, they either underestimated my problem or new VERY little/nothing about it. This will waste time and not be so great for the anxieties that will then amplify your Hyperacusis.

Here's a quick background of how I got it and where I'm at today:

I'm a musician/filmmaker/visual artist. I got H and T filming a friend play drums for about 45 minutes or so, very very loudly, in a small room. First I experienced only Tinnitus (which I can no longer hear) and then Hyperacusis. Both lasted about 9 months. I still occasionally get a small ringing in my ear, which fades in and out in a few seconds. I still can't go to very loud concerts without wearing my earplugs, but you shouldn't do that anyway as it is a very possible way to obtain hearing loss, which I have a bit of. Me refusing to go to loud concerts without ear plugs could have to do with lingering anxieties, but mainly those anxieties are related to concerns about obtaining more hearing loss. 

I'm 24! This happened when I was 21-22, in Sound Design College, trying to study and make friends. I was incredibly depressed and anxious. These feelings will go away. Reach out to your family and friends, whoever you can. They might not fully understand the problem, but their love and support will help so much. Carol Bass at All Ears was a great friend to me too. She, or another specialist can help you figure out your own path.

I continue to live a happy life and have lived in the loud and busy Los Angeles and New York, where I stay busy, make art, and keep living. I know it seems very tough to beat this thing, it was for me too. But I did it, and if you're reading this, find a Hyperacusis or Tinnitus specialist and figure out what can work best. I know you can!

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Joseph Fasolino
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Aplomado

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Reply with quote  #2 
Thank you for posting your story.  That is wonderful!
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sheep

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Posts: 9
Reply with quote  #3 
Hi Joseph.  Really great to read your excellent and very informative and useful story.  Your comment regarding the amazingly limited knowledge of some ENT specialists interested me because this is exactly the same experience I have had over a five year period here in England.  I have, only this week, been with an audiologist with a great deal of knowledge regarding hyperacusis and tinnitus and finally feel I may be getting somewhere.  But there is clearly an issue along the line in ENT specialist and audiologist training.  It is incredible that people working in these fields have inadequate knowledge to be able to assist people effectively!  Very best of luck to you for the future.
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Lorraine shearing
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AnthonyO

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Reply with quote  #4 

One must note and remember, an E.N.T. otherwise known as a "Otorhinolaryngologist" ("Oto" Greek term for 'Ear'; "Rhino" Greek term for 'Nose', and "Laryn" Greek/Modern Latin term for 'Larynx' ie, the hollow muscular organ forming an air passage to the lungs and holding the vocal cords in place in the 'throat')...the "E.N.T." physician, medically & primarily deals with the marriage of these three organs and how they work together in tandem...why nearly 100% of people coming down with hyperacusis, an issue "believed to be" mediated in the auditory processes of the brain, consult with such medical professionals who practice E.N.T. medicine, or feels they will have key answers to their dilemma, is a grave misnomer, at best.

Now...if I had infection, blood, pus & ooze draining from the cavity that connects my 'ear, nose & throat', oh man...you bet I would be knocking down the door, of my local friendly neighborhood, down-the-block "E.N.T.", as hopefully you would too! (?)

This is just my somewhat humorful, tongue-in-cheek, goofball way of encouraging one who suggests they have hyperacusis, to see one who specializes in such infirmity, such as a Neuro-Otologist, Oto-Neurologist or your good old fashion Doctor of Audiology.

Still, then, I wish you the 'best-of-luck'.

"Hyperacusis" and it's anxious sibling "Phonophobia" and diabolical cousin "Misophonia" are very poorly diagnosed & very misunderstood conditions. The fortunate thing, during the last four years of my life with such infirmity, I have met some who have been "cured"...and have met some who have "not" been cured. And I have learned this one important factor involving it all, it's the "brain, body & spirit" working together in all facets, that will be the main determining factor of bringing such auditory malady to healing and to the return point of homeostasis. I have yet to find one single doctor, who can do such that.

Have you?

AnthonyO

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