Any New Hopeful Treatments?

Just checking in to see if there are any recent developments in any treatments.

Been there done that with nearly everything 1+ years ago.

Just curious.

 

Actually yes. There's been some great developments with Susan Shore's signal timing. It could go on the market by 2020 and offer a reduction of around 12dB to ~45%-55% of Somatic sufferers. Maybe more. There's also been some good stuff on FX.

 

Hair Cell Regeneration Trials 2018

• Frequency Therapeutics - FX-322 - Phase 2
• Genvec / Novartis - CFG166
• Audion / Regain Trial

Other Trials 2018

• Xenon Pharma - XEN-1101 (new Retigabine / for epilepsy) Phase 1
• XEN-1101 Phase 2? begin mid 2018
• Sens-401 Phase 2 (for SSNHL)
• University of Michigan Signal timing Device - begin autumn (reduce tinnitus)
• Mutebutton Device (trials in Ireland and Germany; more trials in the US planned)

Trials to begin in 2019

• Otonomy - OTO-313 (reduce tinnitus) Phase 1/2
• Otonomy - OTO-413 (repairing synaptic damage) Phase 1/2
• Otonomy - OTO-6XX (hair cell regeneration) Phase 1/2

These are all the trials I’m currently aware of.


Hair Cell Regeneration

• Frequency Therapeutics - FX-322
• Otonomy - OTO-6XX
• Audion - Regain Trial
• Genvec / Novartis
• Soundpharmaceuticals - SPI-1005 for Acute NIHL Mild-Moderate
• Hough Ear Institute
• Columbia University Medical Center
• Harvard University
• ...

Repairing Synaptic Damage

• Affichem - AF-243
• Otonomy - OTO-413
• Hough Ear Institute
• Bionics Institute and University of Melbourne
• Decibel Therapeutics ?
• ...

NMDA receptor antagonist

• Otonomy - OTO-313
• Auris Medical - AM-111 (keyzilen; for acute tinnitus)

Potassium channel opener

• Xenon Pharma - XEN-1101a (new retigabine, for epilepsy)
• Autifony - Kv3.1

For SSNHL (acute)

• Sensorion - SENS-401

Devices

• University of Michigan (signal timing)
• Mute Button

And more!

 

FX?

 

I still don't know the meaning of the term "somatic T". Is it T caused by an acoustic trauma?

 

Frequency Theraputics. I should have specified.

Oh yeah that's another one. Technically somatic tinnitus means tinnitus from the body (ex: TMD, ETD, SCMD, etc). The proper term for tinnitus that can be modulated by body movement is somasensory, but somatic is used as an umbrella term for all this tinnitus. Somatic proper isn't, but somasensory can be.

 

Thank you!

What kind of T is not somatic?

 

Any kind that cannot be modulated whatsoever with your body.

There's multiple ways to test. The most common being clenching jaw, opening the jaw very wide, bending your neck, or tensing your neck.

There's other ways too. Tinnitus can be modulated by arms, chest, back, stomach, or eye movement. If it does this, you're in the somasensory club, which is nowadays, a HUGE stroke of luck. 80% of sufferers have this tinnitus.

 

Doesn't that mean that T caused by noise isn't somatic?

 

My T Can reliably be made louder by moving my jaw forward...

 

Yes. That is somasensory tinnitus. Also, Somatic tinnitus can't always be modulated by movement. Rick Garner had somatic tinnitus that couldn't because of ETD.

 

@threefirefour What about tinnitus with hearing loss, is that somatic?

 

I’ve been taking Tumeric capsules with curcumin daily and I’ve noticed a lowering of T I’ve assumed mine is caused by inflammation since I had meningitis in December. I will be introducing ginger root into my regimen next week, I like to start with one thing at a time in case there is an adverse reaction.

 

I've been thinking about this a lot lately. I can't really modulate my tinnitus by specific movements, but I can certainly turn it up and down by 1) eating (though it starts 2 hours after so it's not chewing) 2) going into a noisy place 3) running water. 4) riding in a car......doing just about anything other than sitting still in the quiet! It seems if it were sensory it would be one single permanent tone. But it's hard to say because in the end it all involves nerves.

 

It could be. But that's subjective hearing loss being compounded by somatic tinnitus. Greg Sacramento was in this situation.

Sounds like somasensory to me.

 

If it goes up and down in volume on its own is it Somatic?

 

I don't think so, but if it's a result of exerting your body, then it probably is.

 

You did a really nice job in organizing, briefly summarizing and presenting the current status and information!

 

@threefirefour my tinnitus can only be modulated when I yawn. When I yawn the volume increases then returns to baseline straight after. Is that somatic?

Anybody else does this with their T?

 

Mine does that too, but it doesn't return to baseline for about 10 seconds. Yes that's somatic.

 

I though my tinnitus was somatic... But i think it is not... When I Open my jaw, I usually Hear another tinnitus that is not the same as my first.... What is interesting is that Jaw induced tinnitus Sounds the same as noise induced ( a high pitched tone), but ,you an actually feel the source of the tinnitus... I know that mine comes from the inner ear BC I feel IT and the tinnitus from jaw happens only when I Open it IT yawn and IT seems Like my tinnitus Got louder but IT did not... Thats Just another temporary noise induced tinnitus...

 

id say yes if you can modulate your t with facial movements. ie i can make my t louder by opening my.mouth and quieter when clenching my teeth.

Shore explains that when there is a loss of external auditory input, the somatic nervous system tries to compensate.

 

Don't worry, that counts too.

 

...I really need to stop getting my hopes up. It's extremely unlikely that any of these treatments will happen in our lifetime.

 

Researchers from the University of Michigan apparently want to bringt the device on to the market in the early 2020s. The upcoming trial starting in autumn will most likely decide whether we can expect the device soon or not. Affichem presented their development strategy, ideally they’re planning to commercialize AF-243 for hidden hearing loss in about five years. Frequency Therapeutics is already about to start phase 2 this year. Let’s say phase 2 takes two to three years, is successful and phase three takes another two to three years - they could very well bring hearing regeneration on to the market within the next 10 years (okay, maybe that’s a bit too optimistic on my part but phase 2 will hopefully give us a lot of answers!). Otonomy stated they’re planning a combined phase 1/2 for three different products next year, I don’t think they would do so if they weren’t competent they’d be successful - or they’re feeling a bit pressure from other companies such as FX. Mutebutton, though I’m personally not sure whether it’s a scam or not, has plans for future trials in the US and at least they seem eager to sell their device.

Maybe I’m too optimistic but the next two years are going to be really exciting regarding research developments!

 

Extremely unlikely? How so?

 

I really hope you're right. Tinnitus ended my career and most of my hobbies and that's something I'll have to come to terms with, but even if it lowered enough for it not to be constant and unmaskable, I'd be happy...

 

I recall there is a final testing going on of an esketamine nasal spray which reportedly works wonders on depression, including cases where conservative treatments failed. It doesn't share that bucket of side effects of other antidepressants and has little of its own.

https://en.wikipedia.org/wiki/Esketamine

 

Ended your career and hobbies? What did you do? How is it possible that it forced you to give up on things?

 

I had an audio-related career that includes wearing monitoring headphones for most of the workday. I have hyperacusis combined with my tinnitus and I can't handle having headphones on anymore. Most of my hobbies were also either loud or audio-related. I get by and try to occupy myself with whatever I can but focusing on things is extremely hard so quiet/passive activities are difficult to enjoy. I manage because I can't kill myself (hopefully I'll get there, for now I'm afraid of messing it up and making the situation even worse) but there's no joy in it. I don't really wallow anymore, but it is what it is. *shrug*