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SalFaz

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Posts: 71
Reply with quote  #1 
Hi,

My H started October 2, 2019 and seemed fo get much better by Jan 1, 2020. I’d guess LDLs were around 75 when it started. On Feb 6, 2020, I went to an arcade with only intermittent ear protection. The environment did not feel too loud. The next day, ear fullness and pressure was back. And over the past 3 week, the sound sensitivity keeps worsening - I’d guess LDLs are somewhere in the 60s now. I haven’t been overprotecting at all, exposing my ears to sound everyday of urban streets, grocery store, my 5 year old etc (his voice is my biggest issue! It sounds SO loud). Also listening to ocean sounds constantly so I’m never in silence. But my ears feel like they are getting worse and worse. I startled over ever sound last night, my left ear sound feels raw and it’s tight inside. I wore 9db earplugs around my son’s voice this morning and it was blissful to not feel attacked by sound.

Anyhow, I will start pink noise therapy in earnest soon. But any idea why I’m worsening when I’m doing everything right?

Also, my onset is complex - ototoxic drug that damaged mitochondria + loud noise exposure. Currently diagnosed with fibromyalgia so also deal with chronic pain.

Thanks
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Aplomado

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Posts: 695
Reply with quote  #2 
Hyperacusis is an unpleasant disorder.  What you are experiencing sounds pretty normal.  When your ears hurt, it makes it easier for them to hurt more.  When your ears feel better, it is easier for them to feel better.

It sounds like you are doing ok.  I do recommend starting the sound therapy sooner rather than later.  You may wish to get sound generators for your ears as well.  Have you been to a qualified TRT audiologist?  If not, I recommend it.

Finding ways to relax yourself may help a lot in reducing the effects of things getting worse.
  Sometimes I will hear a loudish sound that will trigger my ears to hurt even when it really wasn't so loud at all.  I'm guessing it is a learned reaction, and fear can aggravate it for me.  Deep breathing seems to help, and honestly having a drink or two can make my ears stop hurting and me stop worrying about it... and this appears to greatly reduce hyperacusis setbacks later.  I hesitated to mention that, but it does work for me surprisingly well.

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SalFaz

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Posts: 71
Reply with quote  #3 
Thanks for the reply - very helpful! Luckily the reduction lasted 48 hrs and I'm now back to baseline - which is probably mid 70s. It was scary to go backwards, though, and for no known reason. It makes me less afraid for when this happens again, though, as I can feel confident that I have been able to return to baseline.

I have seen an audiologist who is versed in H and she suggested to me to do sound exposure via pleasant sounds on my phone for now.
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Rob

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Posts: 60
Reply with quote  #4 
SalFaz -

Has a doctor diagnosed you with hyperacusis?  You said you "guessed" your LDLs were 75 and more recently in the 60s.  Has a loudness discomfort level test been administered to you since your symptoms presented in October? 

The ear fullness and pressure you describe often accompanies decreased sound tolerance and can be triggered by fear or concern of sound. 

Rob 
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SalFaz

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Posts: 71
Reply with quote  #5 
Hi Rob,

When I saw Malvina Levy, audiologist, last November, I opted not to have my LDLs taken as I was nervous about the test. I am self testing my comfort zones using a decibel meter on my phone (not too scientific, I know). Thank you for your reply.
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Rob

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Posts: 60
Reply with quote  #6 
I would put the decibel meter (and the hearing protection) in a drawer.  Using a sound meter to check the volume of one's auditory environment generally serves to make us more concerned about sound.  If your clinician believes you have hyperacusis, I would work with her to come up with a game plan to address your sound tolerance issues.  I would also reconsider the LDL test.  When the test is properly administered, it can't hurt you.  It can also provide valuable information to your clinician to help with her diagnosis. 

Rob     
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Aplomado

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Posts: 695
Reply with quote  #7 
If your ldls are around 75, I would probably try a more aggressive approach to treatment.  The pink noise is good (increasing it very slowly over time may be helpful).  Wearable sound generators also may be helpful.  
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SalFaz

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Posts: 71
Reply with quote  #8 
Thanks, both, and will do 😉
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