What Are the Chances of a Cure/Treatment for Hyperacusis in 10-20 Years?

[DrProfit]

I have had hyperacusis for a while. I am at the point where with some improvements and getting used to it I am pretty content to function and stick it out until a cure comes.

Do you think the odds are that we will see a cure for hyperacusis in our lifetime? I know a lot of people are banking on FX-322 but if that doesn't work for hyperacusis, then we have a long way to go. I am thinking a minimum of 12 years.

 

[Diesel]

Treatment odds are high if your tinnitus & hyperacusis symptoms today were caused by noise exposure / acquired SNHL. It stands to reason that FX-322 didn't make matters worse for tinnitus and hyperacusis for participants, as that would have caused an abrupt stop to the trials from a safety perspective. Frequency Therapeutics has mentioned some anecdotes from trial participants that their tinnitus improved (assuming that means it got quieter/less noisy/less reactive).

Personally, I think FX-322 stands a good chance for treating hyperacusis too. It may not resolve all the symptoms, but may turn down the loudness problems, and may help dull the pain reactivity that some have.

Since there aren't good methods for assessing hyperacusis, we won't know until end-patients are receiving the treatment.

I doubt there will ever be a full 'cure.' Most likely we'll all be returning to ENTs for "boosters" of FX-322 or OTO-413 for the rest of our lives to keep the losses in check.

 

[Michael Leigh]

The cure or treatment for hyperacusis first starts with a change of lifestyle. If a person uses headphones, earbuds or headsets, hyperacusis will not improve and will usually get worse over time. The same thing is likely to happen if they listen to loud music through speakers. Professional treatment for hyperacusis requires wearing white noise generators and having regular counselling with an Audiologist, trained in tinnitus and hyperacusis management.

Michael

 

[Zugzug]

I have had hyperacusis for a while. I am at the point where with some improvements and getting used to it I am pretty content to function and stick it out until a cure comes.

Do you think the odds are that we will see a cure for hyperacusis in our lifetime? I know a lot of people are banking on FX-322 but if that doesn't work for hyperacusis, then we have a long way to go. I am thinking a minimum of 12 years.

Predictions of FX-322:

• Will cure super mild loudness hyperacusis and tinnitus
• Will decrease the symptoms of moderate to severe noise-induced tinnitus and loudness hyperacusis
• Will help hearing (particularly word scores) enough to be a revolutionary drug of its time, but far from bringing things back to normal
• Total mystery for noxacusis -- probably will help many, but certainly not a cure

As far as when there will be a cure for these conditions, of any severity, I think we are many years away -- outside of my lifetime.

 

[SadMan]

I think I'm one of the very few people who have tried Keppra on Tinnitus Talk.

 

[Orions Pain]

Noise induced "loudness hyperacusis" will probably see benefit from an FX-322 type treatments especially if it's similar to being a "recruitment" type problem (amplification due to loss in specific areas). Even with noise induced hyperacusis and not something like whiplash or a head injury, there could be other things driving it such as an overactive Tensor Tympani muscle.

Treatment for cochlear/sound induced hyperacusis: 2030.

The bottom line is science has a long way to go before a cure and will need a complete working model of the ear, surrounding nerves and their association with our brain. Perhaps better imaging too. Regenerative medications are a step in the right direction as they will be able to solve these issues via process of elimination.

 

[Contrast]

Tinnitus has likely treatment potential but pain hyperacusis is in the dark. You figure the community would just accept that and willingly give up on reality.

 

[Matchbox]

Even if hair cell regeneration or nerve re-synapsing isn't fully realized, there are K channel anticonvulsants coming out.

At least the Retigabine track record shows we should at least have something (in concert with better benzos targeting subunits shown to not downregulate the receptor after, can't find the paper at the moment) for real symptom control.

 

[DannyB784]

The cure or treatment for hyperacusis first starts with a change of lifestyle. If a person uses headphones, earbuds or headsets, hyperacusis will not improve and will usually get worse over time. The same thing is likely to happen if they listen to loud music through speakers. Professional treatment for hyperacusis requires wearing white noise generators and having regular counselling with an Audiologist, trained in tinnitus and hyperacusis management.

Michael

Funny how he starts with cure and ends with management. There is no accepted cure or viable treatment for hyperacusis, hence why research is ongoing. TRT is used in conjunction with CBT in an attempt to reduce the anxiety and trauma over the diagnosis in hopes the patient will accept and cope with hyperacusis. That is where the benefit ends. One shouldn't use the word cure so frivolously in a forum for sufferers of conditions with no cures.

 

[Michael Leigh]

Funny how he starts with cure and ends with management. There is no accepted cure or viable treatment for hyperacusis, hence why research is ongoing. TRT is used in conjunction with CBT in an attempt to reduce the anxiety and trauma over the diagnosis in hopes the patient will accept and cope with hyperacusis. That is where the benefit ends. One shouldn't use the word cure so frivolously in a forum for sufferers of conditions with no cures.

I am specifically dealing with hyperacusis that is caused by noise trauma. This oversensitivity to sound can be significantly reduced or completely cured. This can be achieved naturally over time or with self-help. In more severe cases professional treatment is required as mentioned in my previous post and in my post: Hyperacusis, As I See It. I once had very severe hyperacusis that was completely cured using white noise generators as part of TRT and having regular counselling with a Hearing Therapist for two years.

Hyperacusis which some call pain hyperacusis, noxacusis, dysacusis and anything else deemed appropriate to throw into the mix, only serves to instil and reinforce negative thinking that can make the affected person believe they will never make improvement and can be seriously damaging to one's mental and emotional wellbeing. Hyperacusis needs treatment and if this is not sought, long term complications can result that I have mentioned in my article: The Complexities of Tinnitus and Hyperacusis.

I see nothing funny in the advice I give to try and help people affected by tinnitus and hyperacusis. I believe it's much better to accentuate positivity, rather than wallow and bleat all day long about the difficulties one is enduring.

Michael

Hyperacusis, As I See It | Tinnitus Talk Support Forum
The Complexities of Tinnitus and Hyperacusis | Tinnitus Talk Support Forum

 

[Born To Slay]

At least the Retigabine track record shows we should at least have something (in concert with better benzos targeting subunits shown to not downregulate the receptor after, can't find the paper at the moment) for real symptom control.

When you find that paper, please share. Sounds very interesting.

 

[StoneInFocus]

Any updates on this? Any hopes we can have our lives back?

What about the treatments currently in the pipeline?

It has become more and more clear that hyperacusis is indeed caused by Type II auditory nerve fibers (type II neurons) acting as pain receptors in response to acoustic damage.

What are the implications of this knowledge?

I can't stand the thought of having to wait 10 to 20 years for a cure. I am slowly losing hope on recovering through silence, supplements and LLLT.

I think I'm one of the very few people who have tried Keppra on Tinnitus Talk.

Did it help with the pain hyperacusis?

 

[GoatSheep]

I doubt there will ever be a full 'cure.' Most likely we'll all be returning to ENTs for "boosters" of FX-322 or OTO-413 for the rest of our lives to keep the losses in check.

Losses in check, as in new losses that occur with age and exposure or that the regenerative effects of the drugs are only temporary and treatment will need to be redone at certain intervals in order to not lose the benefits?

 

[Nobody19]

Our best hope is that the hearing regeneration and tinnitus treatments will also help us. As far as I know there is no direct treatment for hyperacusis in development.

 

[Taw]

I can't stand the thought of having to wait 10 to 20 years for a cure. I am slowly losing hope on recovering through silence, supplements and LLLT.

Did it help with the pain hyperacusis?

Same as me. It seems that I was better when I went outside more often than being homebound. Perhaps because the morale was a lot better, dunno.

 

[rewgs]

Hyperacusis which some call pain hyperacusis, noxacusis, dysacusis and anything else deemed appropriate to throw into the mix, only serves to instil and reinforce negative thinking that can make the affected person believe they will never make improvement and can be seriously damaging to one's mental and emotional wellbeing. Hyperacusis needs treatment and if this is not sought, long term complications can result that I have mentioned in my article: The Complexities of Tinnitus and Hyperacusis.

I see nothing funny in the advice I give to try and help people affected by tinnitus and hyperacusis. I believe it's much better to accentuate positivity, rather than wallow and bleat all day long about the difficulties one is enduring.

The fact that you seem dismissive of the different terms and fail to understand that "pain hyperacusis/noxacusis" are terms created to differentiate from "loudness hyperacusis" (i.e. plain old "hyperacusis") is pretty telling to me. You may have dealt with severe hyperacusis, but not noxacusis, and if you had, I'm sure that you'd understand why such empty positivity isn't well received.

The reality is that noxacusis rarely if ever gets better. It tends to go in only one direction, no matter what we do.

The bleakness is not wallowing. It's simply adjusting to and coming to terms with a horrifying reality.

 

[Michael Leigh]

The fact that you seem dismissive of the different terms and fail to understand that "pain hyperacusis/noxacusis" are terms created to differentiate from "loudness hyperacusis" (i.e. plain old "hyperacusis") is pretty telling to me. You may have dealt with severe hyperacusis, but not noxacusis, and if you had, I'm sure that you'd understand why such empty positivity isn't well received.

The reality is that noxacusis rarely if ever gets better. It tends to go in only one direction, no matter what we do.

The bleakness is not wallowing. It's simply adjusting to and coming to terms with a horrifying reality.

You are entitled to your opinion and I am entitled to mine.

Good day and I wish you well.

Michael

 

[Juan]

I think there is almost zero chance of a treatment for pain hyperacusis "soon", and soon meaning in less than 10 years.

 

[StoneInFocus]

I think there is almost zero chance of a treatment for pain hyperacusis "soon", and soon meaning in less than 10 years.

Why do you think so?

 

[rewgs]

You are entitled to your opinion and I am entitled to mine.

Good day and I wish you well.

Michael

This is not an opinion, but yeah, cool.

 

[Michael Leigh]

This is not an opinion, but yeah, cool.

It is my opinion.

 

[Taw]

This is not an opinion, but yeah, cool.

It isn't a fact either. There are many people which improved from pain hyperacusis. Read Marin's story for example. There are others too:

https://www.tinnitustalk.com/posts/610106/

Of course this never heals, but it can improve to allow a decent life.

 

[Juan]

Why do you think so?

Fixing hair cells and connecting them to the right "transmitter" of sound input into the brain does not seem like something that can be achieved soon.

It's not only regenerating hair cells, but also connecting them in the right way so that sound is driven through the right pathways to be processed. This is very complex, and all the structures involved (cochlea, hair cells, SGNs etc etc) are interconnected and are of course tiny...

 

[GoatSheep]

It seems that I was better when I went outside more often than being homebound. Perhaps because the morale was a lot better, dunno.

I am with you on this. Today the weather has been sunny here even though it's still cold and sitting in the house all day is just so dreary. I had to go out to take my trash cans to the curb for tomorrow's pick up. The neighborhood was so quiet I stayed out there for a minute picking up sticks in the yard and the sun just felt amazing. I want to just sit outside on my back porch so bad.

 

[danielthor]

Fixing hair cells and connecting them to the right "transmitter" of sound input into the brain does not seem like something that can be achieved soon.

It's not only regenerating hair cells, but also connecting them in the right way so that sound is driven through the right pathways to be processed. This is very complex, and all the structures involved (cochlea, hair cells, SGNs etc etc) are interconnected and are of course tiny...

Are we sure that this is how it works though? The cells could simply be in shock, and once they have been regenerated they will be able to process sound in the way they're supposed to. It would also explain why a lot (/most?) patients get better with rest, getting the cells out of this state of shock. Regenerative medicine might be able to speed up this process. If it was a question of loss connections, I don't think a natural recovery would be possible. Dunno.

 

[Juan]

Are we sure that this is how it works though? The cells could simply be in shock, and once they have been regenerated they will be able to process sound in the way they're supposed to. It would also explain why a lot (/most?) patients get better with rest, getting the cells out of this state of shock. Regenerative medicine might be able to speed up this process. If it was a question of loss connections, I don't think a natural recovery would be possible. Dunno.

That's what ENTs have said to me for a decade. This is not only a matter of regenerating hair cells but also connecting every single hair cell properly, so very very complicated...

 

[Diesel]

Are we sure that this is how it works though? The cells could simply be in shock, and once they have been regenerated they will be able to process sound in the way they're supposed to. It would also explain why a lot (/most?) patients get better with rest, getting the cells out of this state of shock. Regenerative medicine might be able to speed up this process. If it was a question of loss connections, I don't think a natural recovery would be possible. Dunno.

I don't see restoring lost connections as the issue it's made out to be. Sure, it probably seems like magic, but the human biology did it once, and some creatures do it automatically on a continual basis; humans do in non-ear parts of the body. So, the body is readily equipped to do this type of work, even if science hasn't caught up to fully understand how it works. Based on what we've seen today from early data on drugs like OTO-413 and FX-322, if the regeneration of cells/synapses didn't reconnect to the auditory nerve, there wouldn't be a measurable improvement. Also, there's literally no research that concludes whether or not a cell resynapses to the same position in the auditory nerve, or if it even matters. So, we don't know what's happening, just that early treatments show that the brain can make sense of the regenerated signal and it shows up in standard clinical tests.

 

[Chris Nesselroad]

Ok this might sound way out there but if they can't heal us, could they just make us deaf?

I have tinnitus, TMJ, trigeminal neuralgia, and pain hyperacusis all caused by a brain tumor. A brain tumor that they can't get out of my head. I've tried tons of medicines, traditional and non traditional. Meditation, diet changes. I love music. I know I would miss it. Something is telling me I'll hear the ringing even if my hearing is gone. I could still work though and my whole family would have me back. People cannot understand my pain. It's frustrating falling on my face over and over to keep these people happy. Every time they scream in my ear I just want to run away and hide in a freaking cave.

 

[StoneInFocus]

Hopefully this is not redundant, but I would like to call attention to the following thread over at Tinnitus > Research News: QurAlis' QRA-244 — An Alternative for Retigabine (Trobalt)?

Basically, a study in 2015 on rats found that the application of Retigabine, a KNCQ channel opener, on certain nerve fibers in the cochlear "suppressed the type II fiber's response to hair cell damage". The above mentioned thread is a recent discussion on this research and other upcoming anti epileptic medicine. I also posted an excerpt of 'Hyperacusis and Disorders of Sound Intolerance: Clinical and Research Perspectives', published in 2018, which briefly discusses this study as well.

 

[Greg Sacramento]

Based on what we've seen today from early data on drugs like OTO-413 and FX-322, if the regeneration of cells/synapses didn't reconnect to the auditory nerve, there wouldn't be a measurable improvement. Also, there's literally no research that concludes whether or not a cell resynapses to the same position in the auditory nerve, or if it even matters.

I like.

Interesting articles:

Cell Transplantation to Restore Lost Auditory Nerve Function is a Realistic Clinical Opportunity - PMC (nih.gov)

Tinnitus Pathways Overview | Tinnitus Talk Support Forum

Neural mechanisms underlying somatic tinnitus - PMC (nih.gov)

Of the 32 major cervical conditions, in almost most, tinnitus will often 50% - 100% resolve if the condition is treated. In most cases of somatic physical tinnitus (jaw and neck) neck muscle spasm history from forward head posture is cause.

When one has tinnitus and then develops pulsatile tinnitus, hypertension - or a brief period of rising blood pressure often happened. The carotid artery often needs examination.

Tinnitus cause can be very complicated, but if one knows their concerning history, go with that as cause. Hyperacusis often associates to loud noise, but any physical condition above the shoulders could also cause hearing loss.