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wayfarer (@wayfarer)

What can be done to help with hyperacusis?

Hearing Loss | Last Active: Oct 3, 2021 | Replies (85)

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@nurseheadakes

Hi – This is Eloise [Nurseheadacke]
Yes – this is NOT a nice symptom to have along with hearing loss, tinnitus, vertigo and other vestibular and brain disorders. Hyperacusis is a result of some type of damage to your auditory nerve system and creates a phantom type feeling you will have whenever you are subject to any type of loud or high density noise. Pressure from this noise attacks your auditory/vestibular nerves and gives you the sensation of pain in your brain, causing you to withdraw from the area or the noise that is causing the pressure.
As my hearing loss progressively got worse, I developed this symptom and identified where, when and why it occurred in my daily life. My audiogram and other tests done in the sound booth helped identify when the hyperacusis showed up and at what pitches it hurt my hearing/brain. I always winced when the noise got too loud or high or the pitches hurt my ears. I had my hearing aids' programs set so that I could turn down the volumes if any background noises were too loud or uncomfortable for me to tolerate. And if I still was unable to enjoy my surroundings, I could leave or ask that the music, noise or whatever would bother me – would kindly turn it down. This is the time to plan before doing, going or attending anything where noise is a factor. Request quiet places, away from children, noisy kitchens, bands, musicians, etc. Peruse before deciding where you will be sitting, attending, participating, in any building or environment so that you have less feedback. Experiencing screaming children at the next table in a restaurant is not a pleasant way to suddenly deal with the amplification of a hearing aid and hyperacusis at the same time. It happened to me this week. AND I let the owners of the restaurant know I was not happy when there were plenty of open tables for elders in a different area. We always need to speak up and let everyone know. They can't see it written on our foreheads or faces. We need to advocate for our best interest.
Keep a diary of ALL of your symptoms so that you neurologist knows what you are dealing with. There is so much momentum now in charting out what the brain and auditory system is doing and how it functions in the RESEARCH world. That is why you all must talk to your doctors and audiologists and the FDA about what you are experiencing right now. There is a 26 day window still to get your STORY in to the FDA for the Externally Led Patient Focused Drug Development Meeting that took place this last Tuesday. HLAA held the live Meeting. Go to their website and give you story and comments about your Hearing Loss, Tinnitus, Hyperacusis, etc so they hear our stories. Thank you.

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Replies to "Hi - This is Eloise [Nurseheadacke] Yes - this is NOT a nice symptom to have..."

so in effect nothing helps i feel doomed and not overreacting, i have always thought of quality not quantity, and off and on illnsses tolerable as have time in between to enjoy lifes small blessings but when its daily and no end in sight…. pretty depressing imo. and apologies to those fighting the good fight; you are amazing people.

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