Hyperacusis Opinion: We Should Be Focusing Less on Regenerative Medicine and More on the Brain

So, I'm not really convinced that hearing regenerative medication will cure our hyperacusis. Especially given most of us with noxacusis have no signs of hearing loss, which leads me to believe something in our brain shifted when we got hyperacusis.

The fact is most people don't get hyperacusis. My partner blew a hole in his eardrum and didn't get it, people on here have gotten it from way less. Some people got it from a neck or brain injury or from major stress. This has to be something wrong with our brains, or else most people would get it.

I'm proposing that we focus our efforts towards finding out what "shifts" rather than hearing regeneration. This would mean advocating for more research into the brain's side of things and donating towards researchers that want to study it. If we could find out what our brain does that causes hyperacusis/noxacusis instead of hearing loss, maybe we could find a way to reverse it.

I'm also still looking towards cochlear destruction as a form of surgery for us. Obviously this would be last resort, but I have a strong hunch it might work for both loudness and pain (inner ear) hyperacusis. It could be the reason why hearing loss, like in @Juan case, can lower the intensity of pain hyperacusis. Likewise with cochlear implants that can destroy the outer hair cells and thereby lower the pain.

Is there anyway we can advocate for this type of surgery? Obviously if the patient was suffering severely and on the brink of suicide. We only have the one report of it being performed and working and that's not much to base anything off of. We won't know this works unless doctors agree to try. Does anyone have any suggestions on where to advocate for this? Can this be experimented with somehow?

 

We cannot prove that it's a brain-thing, but I think so, too.

I know so many people with severe hearing loss from abusing ears over decades, but none of them has hyperacusis. Not even slightly.

My father is a hunter, and he has many friends in his hunting community. Many of them have severe hearing loss from shooting hundreds or thousands of times in the last decades, many of them use hearing aids, some have tinnitus. But there is no single case of hyperacusis.

And for me: when my hyperacusis started, I had perfect hearing for my age. In many frequencies I can hear sounds below zero dB. And at 8 kHz the dB sits at 5-10 dB. But in a very stressful time, full of severe anxiety, I started with TTTS and mild hyperacusis, then tinnitus and then severe hyperacusis.

I couldn’t leave the house for 2-3 months in the beginning. Only with double protection.

 

No, noxacusis is definitely not in the brain. The lingering nerve pain is most definitely middle or inner ear related. I’m sure some degree, and cases of loudness hyperacusis, is in the brain, but the way some of us noxacusis people get neuralgia and an open wound feeling In our ear or deep lingering stabbing and burning, seems more of a physical issue and not a brain one. I don’t think the brain can make your ear feel like that, especially the neuralgia. That’s probably why any kind of brain therapy doesn’t work for a lot of us. Fixing the hearing damage or the damaged middle ear will 100% help a lot of people. Mine feels like there’s broken exposed nerves and broken bones and muscles. I’ve had a many injuries in my life and experienced many sensations, this is definitely not in the brain.

Now I do think the brain chips like Synchron or Neuralink could definitely help us with the pain and tinnitus. It’s going to be a few decades before these can help neurological conditions. But I do think with these devices or other new treatments, we could alter how our brain perceives pain. Hyperacusis and noxacusis are just too complex and there’s too many areas that can be to blame. Middle ear damage, inner ear damage, neck issues, brain issues, all can be causes for noxacusis. And remember that if you think noxacusis is in the brain destroying your cochlea, it will definitely not help.

Finding a doctor to do the surgery will be impossible. I couldn’t convince any just to disconnect the middle ear which is easily reversible. You will have to go to Mexico, or Costa Rica, or somewhere in Asia to find a doctor who would do it.

Curious to see if XEN1101 or Ebselen (SP-1005) will help any of us.

 

Mandatory reading:

1. Auditory Nociception and Pain Hyperacusis Symposium
2. Unmyelinated type II afferent neurons report cochlear damage