What can be done to help with hyperacusis?

I have been living with hyperacusis since 2011. It was sudden onset with tinnitus and hearing loss above 4 kHz in my left ear. It destroyed my audio engineering career and rendered me suicidal, unable to tolerate every day sounds. I have been living as a hermit avoiding people as much as possible. I’m going for a consultation at UCLA Medical Center with Dr Quinten Gopen to see if I am a candidate for his surgical technique. If that doesn’t pan out I will try Dr. Herbert Silverstein in Sarasota Florida who has developed a surgical technique that might work. I have been tested for everything from MS and Minaeres and tried every healing technique to no avail. Surgery is my only hope to get my life back. Hyperacusis is soul crushing and beyond horrible.

@earlyaudio welcome to Mayo Clinic Connect. I know @mark888 as a musician will completely understand the significance of your having to give up your job as an audio engineer due to sudden onset with tinnitus and hearing loss. When is your consultation to find out if you're a candidate for surgery?

Hi Colleen. I’m planning on flying out to Los Angeles in January for my consultation but I might have to postpone until COVID-19 is under control. I’m reluctant to fly or go to a medical facility as the virus spreads. I have lost two friends to COVID thus far, before flu season even got started. Might have to wait for a vaccine to feel safe enough to travel. I am also a musician and used to enjoy playing with bands. I still play but very quietly at home alone. I really miss playing clubs and going to jam sessions. My once vibrant social life is over. I can hang out with people outdoors at a distance if they don’t get loud but mostly I just crave silence and make a quick exit. Most people don’t understand and think that I am overreacting to my “tinnitus” Nobody has ever heard of hyperacusis. Shockingly, most ENT doctors are unaware of this condition and have never even heard the word. I know it’s rare with only one in fifty thousand people suffering from it but being so debilitating one would think it would get more attention. I try to explain that if sound was light, hyperacusis would be like staring at the sun. Freaking horribly uncomfortable. A cure would be miraculous.
Thanks for your reply, I will keep you posted.

What was your path to recovery? Urgently looking for help for my twin sister. Thank you

Hi Karen, allow me to tag fellow members @rivers99 @nurseheadakes @lhester10 @mikepa @mark888 @earlyaudio to share their experiences with hyperacusis.

I can see you are clearly concerned for your sister. Is this a new diagnosis for her?

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.

Hi, Colleen,
My sister has had tinnitus for about 10 years and Hyperacusis the last few years. But both worsened dramatically about a month ago. All she could tie it to was a side effect from the Moderna vaccine. Nothing else had changed. Have you heard of others with this side effect? She can no longer play the piano at all and even riding in a car or on a bike worsens it. Thank you for any help you can give.
Karen

I have profound hearing loss, severe tinnitus, hyperacusis and 3 different types of balance issues, and migraines. Have learned a lot over the years, including that TMJ can cause tinnitus, as well as stress; fungus in the ear can cause hearing loss; sensitivity to noise is lessened for me when I control my environment (avoiding noise, turn off hearing aids when outside with wind or traffic or in crowds (lip reading helps a lot), have ear plugs handy and use at first sign of noise. Keep a journal, find your triggers. In addition to everyday noise, my symptoms worsen with stress, caffeine, sleep deprivation and any time I am feeling puzzled or confused by happenings. White noise works for some, for me, learning to QUICKLY focus on my current task or purpose and tune out the noise helps most. Takes time and practice, but I have lessened my hyperacusis reaction by about 70% (not the occurrence, when I can't control it, but my reaction to it). Hope this helps.

BTW, none of my balance issues are related to my ears!

..SOS having bad days and right now. 2 areas, bowel and ears. have written lots on here different pages cant find right now. bowel spasms, ibsd, c.diff 2018, feecal incontnence since controlling by imodium which probably not helping how i feel, finally going for colonsocopy but spoke to dr never seen befoe, surgeonm and he thinks ct scan best; but today lots of bowel spasms but what is hurtingis as written before tinnitus 24/7, ear fullness, eustachian tube and ent who is swamped says no tubes, cause eardrum puncture in fifty per cent of people, pain and pressure in ears, taking tylenol, started physio but no help today and spouse has own serioius issues i write on here once in a while just cant go on and today is one of those days and had about 3 at least this week... the pain fullness raditing pain nausea but no vomit, taken half clonazepam i honestly dont know what to do any more... its been long time over year and year before other things and been in bedroom ninety per cent of time; no wehre to phone even for chat; found a friend out of town from connect and she has been wonderful sendng emails etc. but right now am very very down - not calling suicide line, i want help for physical pain and i feel horrible as know others worse off than me... crying and moaning not helping and 2 daughters up to necks in work and household and both incuding spouse sick of hearing me whining.... bad enough almost every day, not point going to emerge, no family dr., dr. clinic closeds for weekend cant do anyting anyway.... how do people cope????? sorry.... even p.n. acting up ... i wouldnt expect my dog to put up with this! J.

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.