Where Does Hyperacusis Stand in Terms of Ongoing Research/Treatments?

Did you email them? Or on the AMA? Ahh that sucks - cheers for asking though and getting an answer.

 

last year I asked them on twitter.

 

I think the best bet for hyperacusis right now is FX-322.

 

Yeah, I agree. There's a lot of uncertainties but I really hope it helps.

 

There doesn’t have to be only one tho. A stellate block is a routine procedure that any pain doctor could do. Why aren’t hyperacusis patients going to do it?

 

So I just came across this Hyperacusis Research interview from 2016 with Paul Fuchs from Johns Hopkins, whose team discovered the function of the type 2 nerve afferents as 'pain fibers' and is one of the most knowledgeable researchers on noxacusis. Even though it's 4 years old there's a lot of really interesting and encouraging info here on the state of research into H and where we might be heading.



There are some really interesting bits that I'm excerpting here.

"I like to draw the comparison between hyperacusis and tinnitus. They are consequences of peripheral damage in some way. But when one looks at tinnitus, it is pretty clear that there are a lot of central plasticity and central changes that conspire to provide tinnitus to people. Hyperacusis seems more strongly associated with a change in the peripheral sense organ itself, so hyperacusis is more likely to be something where we can localize the actual mechanism to the inner ear as opposed to the brain."

Q. So the hypothesis is that nerve cells are not signaling the sound in the normal wau and that is one of the causes of hyperacusis?

A. Almost certainly. Everything that we’ve seen so far about these nerve fibers that look like pain fibers in the inner ear, is that they could become the basis for sensations that we now find as hyperacusis rather than normal hearing

Q. And this is exciting news and good news for people with hyperacusis — that in the medium term or long term, might some kind of treatment appear?

A. Yes. Can I add another word about this? In the last year or so, we’ve seen a significant increase in the interest of biomedical and pharmacology companies in these questions. So I’ve been very encouraged by the fact that, at the moment, for example, there’s three or four different contacts that I’ve received from the research and development people at big pharma and little pharma and biotech startups who are beginning to think about the commercial benefit of tackling these things. So I think that’s really encouraging and that will move things a lot faster.

Q. The main cause of hyperacusis?

A. The main cause is hearing loss, so that’s what we can say with any confidence — beyond that, that’s as far as it goes.

 

This really makes me wonder... will a hearing loss cure resolve hyperacusis once and for all given that it all comes down to hearing loss as the root cause? Or will the upregulated Type 2 afferent sensitivity remain and need to be fixed separately.

Also, from a separate article from 2015 there's another interesting tidbit that stands out to me.

"Another unexplained symptom — the feeling of aural fullness or pressure in the ear canal, not unlike the pressure felt during an airplane descent — may be caused by these same pain fibers, García-Añoveros said.

“What they’re detecting is not necessarily sound. They could be detecting spilled contents of damaged cells — a sensation from your ear that is not a hearing sensation.” "

https://www.washingtonpost.com/nati...967ffe-03b7-11e5-8bda-c7b4e9a8f7ac_story.html

Many of us report aural fullness alongside hyperacusis symptoms so it's really interesting to hear it might actually be the ear reacting to spilled contents of damaged cells.

 

Pain hyperacusis is not even a recognized diagnosis. People like Bryan Pollard work so hard but they might as well be whistling in the wind considering how difficult it is for transnational research to reach the clinic.

 

I listened to that 2 days ago and it stood out because what he said was that he had never come across anyone who had pain but didn’t also have loudness. I have pain but no loudness. Was really surprised to hear that given his years of experience. Wasn’t sure how to feel or what to think, lol.

 

Mm it's interesting because for me I would say I have both but they impact me in differing ways.

Before my setback, my hyperacusis was almost a non-issue and didn't really interfere with my daily life but, strictly speaking, I still had some measure of loudness hyperacusis as I couldn't deal with certain environments (mostly very loud places like clubs etc) so even though it wasn't really affecting my life I still couldn't expose myself to environments that people with healthy ears could handle (seeing as most people will only suffer very temporary tinnitus after going to a club etc).

Now, my issue is more pain hyperacusis that is pretty much only triggered by artificial audio sources but this affects my life way more as I basically can't watch TV, movies, listen to music. Whereas before all I had to do really was avoid certain environments and it didn't really interfere with my daily life.

 

That’s what I hope. I feel like us with hyperacusis when we got our ears damaged instead of our brain/ears to make us lose hearing and get tinnitus it does the complete opposite makes us hear louder and pain. That’s why I feel like if we treat hearing loss hopefully we can solve tinnitus and hyperacusis.

 

Yeah, I hope so too. I found another interview with Fuchs containing some further valuable insights. There's a Q+A section where he's asked: "Are some people more sensitive to noise than others, and could this be mediated via Type 2 (afferent nerve) cells?
A: "Yes. Hearing loss often is accompanied by a paradoxical 'gain of function' pathology, hyperacusis, whose most severe manifestation results in pain on exposure to only moderately loud sound. Such morbid hyperacusis ('noxacusis') may be a product of upregulated Type 2 afferent sensitivity, analogous to the hyperalgesia that contributes to neuropathic pain in the somatic nervous system."
https://researchfeatures.com/wp-con...hns-Hopkins-University-Auditory-Science_2.pdf

I think for some of us, whether by some genetic misfortune or something else, hearing damage results in this kind of dysfunctional mechanism where we get stuck with hyperacusis or noxacusis where the type 2 nerve fibers become sensitised in response to tissue damage.

 

I can't remember which researcher said this (Pollard?) but they said regenerative therapies that would work on tinnitus were likely to work on loudness hyperacusis but noxacusis would more likely have to be treated differently.

Probably with noxacusis, treatment would have to be something more like blocking the nerve signals (I think Liberman referenced something like this).

I know @Contrast has pointed this out a million times but he's right, they definitely need to be treated as two separate conditions. Pollard has confirmed that as well.

After reading this:

https://jscholarship.library.jhu.edu/bitstream/handle/1774.2/40719/LIU-DISSERTATION-2016.pdf

I wonder if Dr. Thanos' drug may be helpful for noxacusis, in particular.

 

What do you do for entertainment now as a result of those options no longer being feasible?

 

I read a lot of books so it's not been the absolute worst but hoping my hyperacusis will continue to improve and I will be able to manage those again. Even a few months ago in January artificial audio would trigger burning/cooling sensation whereas it's definitely toned down now... just still not sufficiently resolved yet.

 

I read the abstract and from what I got he claims that pain hyperacusis comes from hair cell damage. So when the underlying cause is fixed shouldn't it not also fix the pain?

 

The fibers in many cases get sensitized to pain after the injury so that's kind of a big unknown. The potential is definitely there I think but, if not, I think there are other potential avenues to explore in the ion channels.

 

Yeah, I've come across that paper before and it's definitely intriguing that it says retigabine silences the activity of the type 2 nerve fibers. I think Liberman mentioned future therapies could try to selectively block the action of the type 2 fibers. Seems like potassium channel modulators could be an effective therapy. But I don't know I feel like it's all so complex esp since we know how elusive the fibers are (far fewer of them and much smaller and harder to detect) and I wonder how difficult it would be to selectively block these fibers so only making sure type 2 fibers are targeted and not type 1 fibers which are involved in hearing. This is such a confused ramble lol and probably doesn't even make sense. I might try and email Paul Fuchs at some point about this.

 

Just to be clear, Bryan Pollard isn't a researcher or a medical doctor. He's the president of Hyperacusis Research and a hyperacusis patient himself.

Same. I also wonder if AUT00063 would've had any effects on hyperacusis/noxacusis. But they didn't test for that and the drug was discontinued after a failed phase 2 trial for tinnitus.

 

[QUOTE="lapidus, post: 521955, member: 4031"
Same. I also wonder if AUT00063 would've had any effects on hyperacusis/noxacusis. But they didn't test for that and the drug was discontinued after a failed phase 2 trial for tinnitus.[/QUOTE]
I was in touch with someone from Autifony about a year ago and they told me they need a similar ion channel drug "but better" (more selective or stronger I suppose) for hearing issues. They haven't abandoned the idea.

 

In addition to Dr. Thanos, there are a few others working on a reformulated, superior version of retigabine. Xenon Pharma have a bunch of drug treatments in the pipeline, mainly focusing on epilepsy. Interestingly, they're also working on Nav 1.7 inhibitors for pain although this is still in the pre-clinical phase. I might get in touch with them at some point and ask about indications for tinnitus/hyperacusis.

https://www.xenon-pharma.com/

 

I am just skeptical about these ion channel drugs because of their side effects. But I read somewhere that Dr. Thanos's drug targets not all of the ion channels thereby maybe reducing the side effects of Trobalt.

 

They're being reformulated to make them even more targeted and to reduce side-effects - this company also mentions that on their site.

 

What kind of hyperacusis research would benefit from excluding people with hearing loss?

The British Tinnitus Association:

Researchers from the University of Nottingham would like to invite you to contribute to an important new research study on hyperacusis!

Who can take part?
You may be able to take part if you:

• are aged 18 years or above
• have experience of living with hyperacusis
• do not have hearing loss (diagnosed or as indicated by hearing and tinnitus survey score)
• have a sufficient command of English to read, understand and complete questionnaires
• Are able and willing to take part in an interview.

What is involved?
Complete two questionnaires about you and your internet use and take part in a one-on-one session with our researcher that will take no more than 60 minutes. This session can be face-to-face at Nottingham Biomedical Research Centre, Ropewalk House or over the telephone or Skype. It is completely up to you. You do not have to live near Nottingham to take part. Your travel expenses will be covered up to £15. As a thank you for taking part, you would receive a £50 gift voucher.

This study will

• Build our understanding of the needs and challenges of living with hyperacusis
• Give you the opportunity to inform the requirements, needs and content of the information developed for this online resource.
• Importantly, help us to provide much needed support to those experiencing hyperacusis

 

I'd be interested in taking this. Is it only for people residing in the UK or for anyone?