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

[Jaysterk]

I know hearing loss leads the pack in terms of research/funding/treatments (if you can call them that).

I assume tinnitus comes second to hearing loss. Maybe leeching off some of the research from hearing loss (FX-322).

My questions is: Where does hyperacusis currently stand in terms on going research/treatments (other than TRT)?
Anything in the pipeline? Are we assuming hair cell regeneration will leak over into hyperacusis?

I have pretty bad hyperacusis in one ear. Needless to mention I also have tinnitus.

I just want to understand where we are with hyperacusis.

 

[Labyrinthine]

I know hearing loss leads the pack in terms of research/funding/treatments (if you can call them that).

I assume tinnitus comes second to hearing loss. Maybe leeching off some of the research from hearing loss (FX-322).

My questions is: Where does hyperacusis currently stand in terms on going research/treatments (other than TRT)?
Anything in the pipeline? Are we assuming hair cell regeneration will leak over into hyperacusis?

I have pretty bad hyperacusis in one ear. Needless to mention I also have tinnitus.

I just want to understand where we are with hyperacusis.

That's something many hyperacusis sufferers, including me, wonder.

Hyperacusis Research Limited posted about this on their Facebook not too long ago. They get this question all the time (surprise surprise) and, unfortunately, at this time, they don't have the answer.

I think that if you zoom into hearing loss regeneration and what's known about the underlying mechanisms of hyperacusis, that, for instance, FX-322, could directly benefit us (I sure hope so). Novel medication originally intended for hearing loss and tinnitus might turn out to be a decent off-label option for hyperacusis, who knows. All that research into hearing loss and tinnitus (inner ear, auditory pathways, brain) is a good thing for us, regardless, and could aid in hyperacusis research indirectly.

A researcher (David Martinelli PhD at University of Connecticut Health Center) has just been awarded a grant to study the recently discovered type II afferent neurons that allegedly transmit pain signals associated with hyperacusis to the brain. Their long-term goal was to dampen these pain signals providing relief for those with ear pain. You can read more about on it the Health Hearing Foundation website.

 

[serendipity1996]

I think future treatments for hyperacusis could come from a number of different directions.

I believe there's reason to be cautiously optimistic about the potential of therapies like FX-322 if approved. One of the leading theories is that painful hyperacusis in particular could arise from over-activity of the type 2 nerve fibers (pain fibers) in the inner ear which are activated in response to outer hair cell damage. Thus, it seems logical that something like fx-322 could also solve the root cause of hyperacusis if this theory turns out to be true.

I also think the reformulation of Retigabine (Trobalt) which is being worked on by Professor Thanos Tzounopoulus could target hyperacusis as research has indicated that it silences the activity of the type 2 nerve fibres.

Since noxacusis looks to be essentially a form of nerve pain, there's also hope that understanding and treatment of neuropathic pain can be applied to hyperacusis sufferers.

Given that there are currently basically zero treatment options (pharmacological ones) targeted towards hyperacusis, it would be great to have treatments that offer pain relief at the very least without the risk of severe side effects or addiction etc. Even if it's not ultimately fixing the root cause at least it would be something to manage the pain.

 

[Lucifer]

Also don't forget we have Audion Therapeutics as well. Phase 2 results coming out end of April and hopefully they go directly to Phase 3. We have an anecdote from someone stating that they were able to rejoin their career playing in the band and that their hyperacusis and tinnitus must have improved. I do believe Audion regrows outer hair cell which seems why it causes us pain.

What I'm worried about is the delay of the drugs coming out to the market especially FX-322 since Frequency Therapeutics have US rights and Astellas have international rights. I'm guessing they will most likely release it to the US first then international markets but maybe Astellas could release it first since it is a very big company and can make batches of the drug.

 

[lapidus]

On a more experimental note but specifically for H there's the Silverstein surgeries and the stellate ganglion block. The latter one is moving very slowly though. Only one patient case study so far.

https://www.tinnitustalk.com/thread...cement-for-the-treatment-of-hyperacusis.7252/

https://www.tinnitustalk.com/threads/fix-for-sound-induced-pain-—-stellate-ganglion-block.33478/

 

[Juan]

My questions is: Where does hyperacusis currently stand in terms on going research/treatments (other than TRT)?

I honestly think there is no money at all for research. Companies will rather market useless snake-oil therapies as TRT for a high price, or prefer us to go deaf and sell us useless hearing aids at a crazy price. It's simpler, cheaper and more profitable than trying to fix hyperacusis.

Also true hyperacusis, really bad hyperacusis is very rare, so there isn't a big market to pay back the huge cost of researching this.

 

[Jaysterk]

I honestly think there is no money at all for research. Companies will rather market useless snake-oil therapies as TRT for a high price, or prefer us to go deaf and sell us useless hearing aids at a crazy price. It's simpler, cheaper and more profitable than trying to fix hyperacusis.

Also true hyperacusis, really bad hyperacusis is very rare, so there isn't a big market to pay back the huge cost of researching this.

Do you suffer from hyperacusis?

 

[serendipity1996]

Also don't forget we have Audion Therapeutics as well. Phase 2 results coming out end of April and hopefully they go directly to Phase 3. We have an anecdote from someone stating that they were able to rejoin their career playing in the band and that their hyperacusis and tinnitus must have improved. I do believe Audion regrows outer hair cell which seems why it causes us pain.

What I'm worried about is the delay of the drugs coming out to the market especially FX-322 since Frequency Therapeutics have US rights and Astellas have international rights. I'm guessing they will most likely release it to the US first then international markets but maybe Astellas could release it first since it is a very big company and can make batches of the drug.

Oh yeah we've got the audion results coming in in a couple of months. Should be exciting. I'm a little bit confused about how the FDA's fast track process works. Obviously it expedites things but what would be the impact on the stages of the clinical trials? How much quicker would they be able to get fx-322 to market if it passes the next phase of trials successfully?

 

[Lucifer]

Oh yeah we've got the audion results coming in in a couple of months. Should be exciting. I'm a little bit confused about how the FDA's fast track process works. Obviously it expedites things but what would be the impact on the stages of the clinical trials? How much quicker would they be able to get fx-322 to market if it passes the next phase of trials successfully?

Depending on if FX-322 goes directly to Phase 3 there is a slight chance they could release the drug into the market during Phase 3. If Frequency Therapeutics do not release the drug into the market during Phase 3 then maybe Astellas could. I don't think trials have to be repeated.

 

[serendipity1996]

Just wanted to add a few more thoughts here.
I think the theory that pain-hyperacusis is a form of neuropathic pain is very convincing so I think it's good to keep tabs on both emerging treatments in inner ear regeneration but also the field of neuropathic pain research and treatments that aim to address neuropathy. Hyperacusis Research has touched on this a few times in a lot of their research news.

Additionally, there's been a lot of R&D devoted to a particular type of therapy called Nav 1.7 blockers which are designed to block pain signals. From what I've read, this is an area where a lot of progress has been made over the past 10-15 years but there are still significant hurdles to overcome.
https://www.the-scientist.com/features/targeting-sodium-channels-for-pain-relief-30147
https://www.nature.com/articles/d41573-019-00065-0
Perhaps this could address noxacusis at some point.

It's perhaps worth mentioning that Xenon Pharma, a biotech company working on a reformulated version of retigabine for epilepsy patients is also in the pre-clinical phase for Nav 1.7 inhibitors for pain relief.
https://www.xenon-pharma.com/product-pipeline/

 

[Juan]

Do you suffer from hyperacusis?

Yes, I have been suffering from hyperacusis for many years. It does not go away in my case, just turns into other hearing problems... now hyperacusis + tinnitus + some hearing loss.

 

[Contrast]

A handful of smart biomedical scientists who have spent decades studying the inner ear and mechanisms behind pain are at the mercy of clowns. The clowns do not know the difference between "pain from sound" and "noises sounding amplified".

The clowns merged ear pain and noises sounding abnormally loud together as if they are one problem when they are two. Currently the clowns' dogma is succeeding over the biologist discoveries.

Honk honk.

 

[Jaysterk]

Yes, I have been suffering from hyperacusis for many years. It does not go away in my case, just turns into other hearing problems... now hyperacusis + tinnitus + some hearing loss.

Did you develop the hearing loss from the hyperacusis?

 

[Juan]

Did you develop the hearing loss from the hyperacusis?

Yes, the hearing loss was a result of hyperacusis, a few years down the road. My feeling is that, for instance, if one has a certain very minor loss from the first noise trauma that triggers hyperacusis, let's say 20 dB at 6 kHz, which is quite typical, there may be further hearing loss hidden at 6kHz or the surrounding frequencies, and also our hearing is more delicate as a result of the noise damage.

Over time, in my case, the hearing loss has progressed as a result of accidental noise exposure. Some sounds could alter my hearing thresholds and LDLs temporarily, and then I came more or less back to baseline, but very loud sounds that one encounters by accident can do real and lasting damage even wearing hearing protection, so it is best to be very careful with them.

 

[Badger19]

Also don't forget we have Audion Therapeutics as well. Phase 2 results coming out end of April and hopefully they go directly to Phase 3. We have an anecdote from someone stating that they were able to rejoin their career playing in the band and that their hyperacusis and tinnitus must have improved. I do believe Audion regrows outer hair cell which seems why it causes us pain.

Could you give me a link to that anecdote?

On topic: the Brai3n clinic in Belgium offers hyperacusis treatments. It involves placing a small membrane on the eardrum to relax the tensor tympani muscle. I have no idea about the success rate.

https://www.brai3n.com/en/disorder/tensor-tympani-syndroom-tts/
https://www.brai3n.com/en/disorder/acoustic-shock-disorder/

 

[Christopher805]

You guys sound smarter than the researcher who work for these research firms. WOW. Which tells me it is amazing what we are capable of when we truly have something at stake. Let's pray these companies and other sectors of the political chain have something other than money at stake. I pray that TOMORROW is TODAY for a viable cure for us all. It's time well overdue.

 

[Lucifer]

Could you give me a link to that anecdote?

On topic: the Brai3n clinic in Belgium offers hyperacusis treatments. It involves placing a small membrane on the eardrum to relax the tensor tympani muscle. I have no idea about the success rate.

https://www.brai3n.com/en/disorder/tensor-tympani-syndroom-tts/
https://www.brai3n.com/en/disorder/acoustic-shock-disorder/

The rumour in the music community here was this person was doing much better with his tinnitus and hyperacusis and could work with music again like before. I managed to get in contact with him and turns out he has been a part of the Regain Project trials.

He said he unfortunately wasn't allowed to tell me much about it, but that he had some gel-like medicine injected in his ears, and it had helped him a lot. He used those words!

And also I see he is touring again, which really is a good sign!

Just wanted to post it on the forum, cause it sure made me hopeful for some relief in the near future!

It's in the Audion Therapeutics thread. I think page 9, around 22nd July 2019.

 

[Christopher805]

I wish the musician could divulge more about the treatment protocol. Is this gel offered anywhere else like the United States? I also wonder if there are side effects. Also, if it's one time deal and it's gone for good. Also, with respect to Brai3n are there any other firms that offer this or do they have hold the patent for it? Hyperacusis is a beast.

 

[Lucifer]

I wish the musician could divulge more about the treatment protocol. Is this gel offered anywhere else like the United States? I also wonder if there are side effects. Also, if it's one time deal and it's gone for good. Also, with respect to Brai3n are there any other firms that offer this or do they have hold the patent for it? Hyperacusis is a beast.

I asked but they couldn't get more information from the musician. But hopefully this helps all of us.

 

[Christopher805]

I am 60 and during my life I've watch a considerable amount of TV. Please correct me if I am wrong and trust me I want to be wrong I have never seen a commercial or public service announcement for tinnitus in the United States. Please someone tell me and show me I am wrong. Please tell me that the lack of empathy I feel is wrong. No our condition is not physically terminal but it dang sure is mentally. While I am encouraged and enthralled with the discoveries looming and those currently such as Lenire I am trying to understand how hair cell regeneration will help. There is much we still do not know about the brain and it's connection to the ear. I equate hair cells to the keys on a piano, each has its unique tone and in the case of hair cells unique frequency. I can play a song on a piano with missing keys by going up or down one octave but the sound will not be exactly as if I played the song on the correct keys in the correct octave. It's just not the same.

How will regenerated hair cells be able to replicate the exact frequency of the damaged hair cells? And how will the brain interpret the sound of these regenerated hair cells to create the sound we had with our original hair cells?

I honesty pray someone can explain this to me in a way that make sense. I want to believe but after talking with leading clinicians it's hard to see how regenerated hair cells will work. I just want to know and believe it's tenable.

 

[serendipity1996]

Interestingly, I was corresponding with someone who reported that their hyperacusis symptoms improved from taking Lithium. I found this pretty intriguing as all I knew about is is that it is typically prescribed for bipolar disorder. Came across a few interesting papers which look encouraging.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3309729/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5788089/

 

[serendipity1996]

Again, this isn't specifically hyperacusis-related but this company is developing therapies to reverse and regenerate peripheral neuropathy. They are currently focused on addressing chemotherapy, diabetic, and HIV-induced peripheral neuropathy but I wonder whether it would also have broader application. If painful hyperacusis is a form of peripheral neuropathy (burning, tingling etc) then maybe it would help. Their drug candidate is just about to start phase 2 and according to their mission statement "Our goal is to get drug approval in the US by 2021 and perhaps sooner elsewhere."

https://winsantor.com/

 

[Jaysterk]

Again, this isn't specifically hyperacusis-related but this company is developing therapies to reverse and regenerate peripheral neuropathy. They are currently focused on addressing chemotherapy, diabetic, and HIV-induced peripheral neuropathy but I wonder whether it would also have broader application. If painful hyperacusis is a form of peripheral neuropathy (burning, tingling etc) then maybe it would help. Their drug candidate is just about to start phase 2 and according to their mission statement "Our goal is to get drug approval in the US by 2021 and perhaps sooner elsewhere."

https://winsantor.com/

Is it possible to have both loudness and painful hyperacusis?

 

[MRItechssuck]

I am 60 and during my life I've watch a considerable amount of TV. Please correct me if I am wrong and trust me I want to be wrong I have never seen a commercial or public service announcement for tinnitus in the United States.

I had tinnitus for 20 years... I agree... never saw or heard any PSA or commercial for tinnitus... the ATA and BTA are worthless.

 

[serendipity1996]

Is it possible to have both loudness and painful hyperacusis?

I think most people have a mixture of both. In the Tinnitus Talk Podcast interview with Bryan Pollard from Hyperacusis Research though he said that whilst many people seem to have just loudness hyperacusis with no pain, it's more common for people whose primary complaint is pain hyperacusis to also have it be accompanied by loudness hyperacusis.

 

[serendipity1996]

Btw has anyone had any luck with turmeric (curcumin) for hyperacusis?

 

[Juan]

Btw has anyone had any luck with turmeric (curcumin) for hyperacusis?

It did something at the beginning, but not anymore... Maybe due to tolerance or some other factor. But it is just a spice, you can have it, it has a positive impact.

 

[HootOwl]

I am 60 and during my life I've watch a considerable amount of TV. Please correct me if I am wrong and trust me I want to be wrong I have never seen a commercial or public service announcement for tinnitus in the United States. Please someone tell me and show me I am wrong. Please tell me that the lack of empathy I feel is wrong. No our condition is not physically terminal but it dang sure is mentally. While I am encouraged and enthralled with the discoveries looming and those currently such as Lenire I am trying to understand how hair cell regeneration will help. There is much we still do not know about the brain and it's connection to the ear. I equate hair cells to the keys on a piano, each has its unique tone and in the case of hair cells unique frequency. I can play a song on a piano with missing keys by going up or down one octave but the sound will not be exactly as if I played the song on the correct keys in the correct octave. It's just not the same.

How will regenerated hair cells be able to replicate the exact frequency of the damaged hair cells? And how will the brain interpret the sound of these regenerated hair cells to create the sound we had with our original hair cells?

I honesty pray someone can explain this to me in a way that make sense. I want to believe but after talking with leading clinicians it's hard to see how regenerated hair cells will work. I just want to know and believe it's tenable.

You can always head over the Frequency Therapeutics thread and read through the discussion there. We talk about this a lot and after seeing the data from phase 1 there is a lot to be hopeful for.

If you want to know the exact "how" of hair cell regeneration though you might have to do some primary reading. I'm not sure how much of that can be explained easily, outside of the presentation summaries that have already been put out by companies such as Frequency and Pipeline.

 

[Christopher805]

Thank you for the response. After posting this I found the Frequency Therapeutics thread and now understand the potential for HC regeneration.

 

[Contrast]

Again, this isn't specifically hyperacusis-related but this company is developing therapies to reverse and regenerate peripheral neuropathy. They are currently focused on addressing chemotherapy, diabetic, and HIV-induced peripheral neuropathy but I wonder whether it would also have broader application. If painful hyperacusis is a form of peripheral neuropathy (burning, tingling etc) then maybe it would help. Their drug candidate is just about to start phase 2 and according to their mission statement "Our goal is to get drug approval in the US by 2021 and perhaps sooner elsewhere."

https://winsantor.com/

I asked then about pain hyperacusis and they told me they don't have evidence to suggest it is caused by that.