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Arnaud

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Posts: 7
Reply with quote  #1 
Hello,
I suffer from severe Hyperacusis. My JQH is 46 dB.
This is relatively new to me as it really started to be unbearable 2 months ago. I have started sound therapy with a pink noise app. After some improvements it suddenly began to be worse. I do not know what causes this degradation. Now I am back to listening pink noise but at much lower level than before. I cannot stand having diners with my family (dishes, conversation) and find myself isolated all day long in my bedroom. Should I continue pink noise even through headphones or listen on speakers? Should l raise the volume even if it hurts?
is it OK to wear earplugs for some time during the day to rest?
So many questions...
I really feel isolated and would like to share but I feel like a burden to my wife and do not feel like putting to much despair on her shoulders.
This sickness is so scary....

Thanks in advance for your support.
Regards,
Arnaud
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goodfella032

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Posts: 19
Reply with quote  #2 
Thanks for sharing your story. May I ask what caused your H or how did it start?

I am new to this condition and it is definitely scary. Lowering stress and anxiety are really important in dealing with this. Easier said than done for sure. I focus on the small "wins" or positives as they come. For instance today my sound tolerances really fell off as the day progressed, but my aural fullness wasn't that bad today so I'm focusing on that. You mentioned that you had been making progress but fell back. In talking to an expert in the field the recovery process from H is non linear. Set backs are to be expected but not focused on. As for the pink noise from what I have read is that for it to work it's got to be done on a dedicated regiment for an extended length of time. I've read that volume should be at a tolerable level to start and increase slowly from there. I've also read that some have had success from using other sounds..music, nature, etc. As for the family, that is a tough one for sure. It's easy to beat yourself up because as much as you explain it to someone no one can relate to what's going on in your head unless they've been down that path. As for the wife, I took my vows seriously and the for "better or worse" sometimes comes into effect on the worse side. It shouldn't change anything and you are not a burden. If you live long enough on this earth you will experience bad times. Finally, find someone in your area who is an expert at treating Hyperacusis. There aren't many out there but they're out there. Stay positive and stay engaged with the world as much as possible,
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Arnaud

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Posts: 7
Reply with quote  #3 
Thanks for your message.
It feels good to be heard or read, should I say!
My problems started in July last year when I started to have minor earache after taking scuba diving classes over the weekend. My GP did not see much, not to say none, and gave me some drops just to reassure me. After 3 weeks, I felt nothing and went back swimming. Starting from here, I started to be really worried as I had to take a long flight the next week. But again my GP did not see anything, and my ENT said all was OK.
The flight was ok but I started to feel pain wearing the over-the-ear headphones. The next month, as I had to go back scuba diving to complete my training, I was so worried that I went to see 2 different ENTs. They both said I had sparkling clear ears and no problem. Note that I completed my training without any pain. I guessed at that time that it was all in my head. To stressed of the possible bad consequences of the scuba diving.
Anyway my ears were still bothering me a little but I tried to forget them. And suddenly few weeks after I had my jaws blocked due a stressful professional situation. My dentist was then convinced I had TMJ issues and made me wear a Mouth guard. No improvements seen...
I kept living my life normally trying to avoid headphones as much as possible. Then In January this year, as the pain was not gone I had a CT scan and MRI. None of them were showing much, maybe a mild jaw displacement. But enough for my dentist to conclude for certain it was TMJ.
This is around that time I started to feel discomfort in loud environments. Starting to feel my ears and jaws tired when having a discussion with colleagues. I also was not able to listen to music or voices with my headphones. When shouting to my kids, I realized that my own voice was hurting me. Once again I had to take a plane and started to over stressed a lot the weeks before. I bought earprotections. Once back from that trip in March, I started to experience more and more sensitivity to everyday sounds. I went back to an ENT and neurologist but they focused on my TMJ. By chance I found a good audiologist well-aware of tinnitus and hyperacusis. She measured my LDL and did different exams to confirm my severe hyperacusis. My tolerance level being less than 50dB, there is not much I can still support.
I started TRT by listening to pink noise but as I said after a slight Improvement I felt back even lower than before...
That is why I am really scare.
I understand now the road to recovery will be bumpy, but still it is hard to have to cut yourself from the world, from you family.
I know I must hang on, but easier said than done...
But sharing with you helps me and that is a little comfort, a little victory I will take for today.
Hoping tomorrow will bring more even tiny signs.
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SalFaz

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Posts: 71
Reply with quote  #4 

I'm so sorry for your suffering and I definitely understand the impact this condition has on life. Have you gotten any ear plugs or ear muffs yet? While I know we're not supposed to over use those, perhaps those can get you out of your room a bit more. I know that when I stay isolated all day, the mental distress is almost worse than the "protection" of my ears.

I am following this thread to see what advice you receive on pink noise.

I too feel really unlcear on how this works. My LDLs were manageable in the low 70s in February then somehow dipped to around 64 by mid-March. No idea why.

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Arnaud

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Posts: 7
Reply with quote  #5 
Hello SalFaz,

Yes I bought earplugs. At first I was afraid to wear them at home as I had read that wearing protections might be counter productive.
But this weekend after my first setback, I decided to start using them also inside to rest my ears. I even watched a movie with my eldest daughter. OK I was mostly reading the subtitles but anyway it helped psychologically to share some moments with my family. I am also restarting listening to pink noise, sure from a very low level but restarting that therapy I believe in today.
And on a way that pandemia helps me somehow. This is weird to say that, but I now work from home in a environment where I can control the sound levels.
I am trying to stay positive but it is hard as I must restrain to speak, because my own voice is still too loud and painful to me.
Instead I am sharing with you. It helps.
Thanks again for listening and understanding.
it is great to share with people who really know how H is.
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SalFaz

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Posts: 71
Reply with quote  #6 
I really understand and empathize deeply. Please keep us posted on pink noise. Also, what does your ear pain feel like? Seems like you have loudness and pain? [frown]
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DanMalcore

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Dan
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Reply with quote  #7 
Quote:
I have started sound therapy with a pink noise app. After some improvements it suddenly began to be worse. I do not know what causes this degradation. Now I am back to listening pink noise but at much lower level than before. I cannot stand having diners with my family (dishes, conversation) and find myself isolated all day long in my bedroom. Should I continue pink noise even through headphones or listen on speakers? Should l raise the volume even if it hurts?  is it OK to wear earplugs for some time during the day to rest?


There is no point in starting pink noise therapy if you have no idea how to proceed.  The network provides a very detailed 6 page guideline (nearly 6000 word) explaining how to do sound therapy with a professionally produced analog unfiltered broadband pink noise track. You cannot self help yourself if you have no idea on what your doing.

The very best approach is to be diagnosed, treated and receive ongoing direct counseling from a qualified clinician.  It all starts with a Loudness Discomfort Level test so your progress can be monitored.  Most hearing professionals are clueless on hyperacusis.  A list of qualified clinicians is listed on this message board. 

For whatever reason if you decide to go it on your own you better know what you are doing or you have little chance of greatly improving your decreased sound tolerance (DST).  I wish you well...

[wave]Dan

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

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Posts: 7
Reply with quote  #8 
Quote:
Originally Posted by SalFaz
I really understand and empathize deeply. Please keep us posted on pink noise. Also, what does your ear pain feel like? Seems like you have loudness and pain? [frown]


Yes, the main difficulty for me at the moment is to have a normal conversation. As I also have TMJ, I feel some fatigue in the joint behind the ear as as I start to speak. Hard to describe the pain in the ear, I would say it is sharp pain in the eardrums.
At the moment I am restarting sound therapy with pink noise mixed with the sound of my A/C.
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Arnaud

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Posts: 7
Reply with quote  #9 
Quote:
Originally Posted by DanMalcore


There is no point in starting pink noise therapy if you have no idea how to proceed.  The network provides a very detailed 6 page guideline (nearly 6000 word) explaining how to do sound therapy with a professionally produced analog unfiltered broadband pink noise track. You cannot self help yourself if you have no idea on what your doing.

The very best approach is to be diagnosed, treated and receive ongoing direct counseling from a qualified clinician.  It all starts with a Loudness Discomfort Level test so your progress can be monitored.  Most hearing professionals are clueless on hyperacusis.  A list of qualified clinicians is listed on this message board. 

For whatever reason if you decide to go it on your own you better know what you are doing or you have little chance of greatly improving your decreased sound tolerance (DST).  I wish you well...

[wave]Dan


Hello Dan,

I would like to buy your pink noise CD. Would it be possible to get a soft copy instead of getting a flash drive via mail?
I can directly use PayPal.

Let me know.
Thanks again.

Regards,
Arnaud
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DanMalcore

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Dan
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Reply with quote  #10 
What do you mean by a soft copy?

Dan

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

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Posts: 71
Reply with quote  #11 
he means a digital file of the items. 😉 I too am curious if you offer this
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DanMalcore

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Dan
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Reply with quote  #12 
The digital is contained in the flashdrive which comes with the 6 page guideline.  Then you can transfer it to any device you wish.  The network does not send the pink noise sound track and guideline via email.

[wave]Dan



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

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Posts: 7
Reply with quote  #13 
Quote:
Originally Posted by DanMalcore
The digital is contained in the flashdrive which comes with the 6 page guideline.  Then you can transfer it to any device you wish.  The network does not send the pink noise sound track and guideline via email.

[wave]Dan




Hello Dan,

By "soft copy" i meant get it by mail attachment  for instance.
Because it might take  some time for it to get to me by postal mail at the moment.

Regards,
Arnaud
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DanMalcore

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Dan
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Reply with quote  #14 
Mail is only a matter of a couple days.  Wishing you well...

[wave]Dan

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

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Posts: 7
Reply with quote  #15 
Quote:
Originally Posted by DanMalcore
Mail is only a matter of a couple days.  Wishing you well...

[wave]Dan


Hello Dan,

I just bought the pink noise product online via PayPal. I live abroad so I hope it will not take too long for the flash drive to be shipped by regular mail.

Thanks.
Regards,
Arnaud
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