MuteButton

What podcast? The one with Richard Tyler that isn't out yet?

 

Have faith, everyone. We just have to wait.

 

100% agree. Be prepared for another big disappointment.

I wish it will be the opposite, and I would spend a fortune for a device.

But I cannot really believe that something like tinnitus, which has existed for thousands of years, will reliably be cured by some sound and electrical stimulation. Hope never dies, but I am very skeptical.

 

I just don't get this. The proof is here. There are a few members here that this has worked for. I am not saying this will work for everyone and it has never been labeled as a cure. If it is not Neuromod maybe it will be Susan Shore or the University of Minnesota. Possibly within several years they may be able to dial it in to actually cure this. Ultimately if we can regain our hearing that is the best approach, but as of right now this technology has proven to be successful in treating tinnitus.

 

I understand and respect your skepticism but your argument doesn't seem solid.

Plague and disease has been with us for thousands of years and yet in the past century or so we have succeeded in preventing it by jabbing each other with fluid filled needles.

Nearsightedness is treated by sticking weird bits of plastic foil on your eyes.

Cancer, killing all multicellular organisms since the dawn of time, is now cured by exposing the patient to invisible, odorless death rays!

It is not at all hard to imagine that tinnitus will be treated with some sound and electrical stimulation.

 

Of course I don't know. Neither do you This is all speculation. Both positive and negative speculation work together to help us get closer to the truth. That's what I am interested in.

 

Sorry I meant that short clip that was tweeted today by Neuromod. Hubert Lim hasn’t given any new information that wasn’t already known publicly.

 

Electrical stimulation is a burgeoning field. There's something to it. This crossed Google News just today:

https://www.npr.org/sections/health...n-stimulation-could-help-sharpen-aging-memory

 

We did actually learn one thing. When they stated 2/3’s they were talking about the whole population of the trials and not 2/3’s of the 80% achieving clinical significance.

What was interesting though is how Hubert spoke a lot about the different parameters when talking about the complexity of tinnitus. There just isn’t enough time and resources to test every single possible parameter and there are many different kinds of tinnitus. Going back to Susan Shore if I remember correctly she spoke about that within a decade it could be possible that bimodal stimulation could be used to treat all the different types of tinnitus. So if you’re in the 1/3 that this treatment does nothing for, that doesn’t eliminate that another parameter may work for you with the same principle of bimodal stimulation.

I will compare to what I’m trying to say to Epilepsy, another complex brain condition. There are over 40 different types of Epilepsy and when I’ve spoken to a friend who has epilepsy I remember him saying it took his doctor a long time trying to figure out the right combo of treatment for him to reduce the amount of seizures he had.

I think a lot of people’s skepticism comes from the uncertainty - even Hubert Lim our tinnitus expert cannot fully explain how this treatment works, it’s all a theory.

Anyway, I wish Neuromod would get Susan Shore on board, she’s truly the one to solve the puzzle of tinnitus.

 

Tinnitus has been around for millions of years. It’s not specific to our species. Neuromod have disappeared again. I personally think they have run out of cash and are waiting for investment. Very disappointing yet again. Deja Vu.

 

Another ACRN in the making. We can't discount that possibility. The radio silence is of concern.

 

This is a weird set of comments there at 53:00, because it stands in really stark contrast to the Dr. Shore literature, which directly proposed a neurological mechanism for treating tinnitus in a new way based on specific bimodal stimulation.

I'm less familiar with Dr. Lim, but Dr. Shore's work is about reducing tinnitus signal intensity...

 

Disappeared again?

 

Yeah seriously. That podcast about the brain "not focusing on the tinnitus anymore" is very worrying. Seems like this will be a habituation device after all... What a bummer.

 

The biggest issue for me really is their silence regarding the launch. They posted the interview with @Steve at the beginning of December, that's four months ago. It's completely understandable that people are wondering what's going on after four months without an update. But I'm glad that Neuromod seems to understand the dire need for real treatments and they're still active on Twitter. Just a small update along the lines of "We'll be providing more information about the European launch date as soon as possible" instead of just recommending to sign up to their newsletter would be great.

 

New Tweet off Neuromod saying they understand the global frustration and to look out for updates soon.

 

It does sound familiar to those who have been around long enough with ACRN... 7/10 benefit... Years in the making... Scientific videos... Lead researchers on board.

Just have to wait and see.

Anyway the internet broke ACRN and surely they know it’ll happen with Neuromod if they fail to deliver.

 

I have not been following this MuteButton story at all.

Can somebody explain to me the pathology.

What is bimodal stimulation supposed to do?

Obviously it will not bring broken stereo cilia and dead nerve cells back to life.

So what chance does it have of solving anything?

This is a genuine enquiry, looking for some science behind it here.

 

Thank you @TinnitusHub for giving them a nudge on all our behalf. Hopefully they’ll engage with their potential future customers who are also working hard to save for this and have been following them daily for the last few months.

Anybody that keeps talking about another ‘habituation’ device, although the recent testimonials and some comments appeared to lead to this way, I will remind the forum:-

- Although the main outcomes were TFI and THI which are psychological, they also mentioned MML and TLM. Assuming when they said 2/3’s benefited - they included this (reductions in MML and TLM) that would indicate this actually reduces the volume or intensity.

If they have only got reductions in TFI or THI and haven’t said about the other 2, they have certainly pulled the wool over people's eyes as these measures are purely psychological. My tinnitus stays the same, my emotional response varies by day. What I’m expecting with a treatment costing thousands, is a good chance of volume reduction. This is what this treatment has so far implied to do.

- 2 members - @Clare B and @kelpiemsp have reported complete elimination of tinnitus and a definite lowering of volume.

- Some testimonials indicated reductions in tinnitus - assuming from this is a reduction of volume and not in intrusiveness.

Just a few factors there to consider but it would seem unlikely this is just a habituation device - what would be the point of listening to sounds and getting your tongue stimulated just to habituate? What is the science behind that? The science has led towards the brain breaking up these patterns of neurons behaving erratically through maladaptive plasticity.

I wish Neuromod the best of luck because if it is a habituation device I can certainly tell you 2019 has higher demands for new treatments that actually do something for volume and intensity reduction.

 

Guys, Neuromod are currently filing a trademark for the Lenire name to be used as the new name for the MuteButton.

This trademark is currently in its opposition period which ends at the beginning of May.

Only then will they be able to properly launch with the new name. They're also intending to pursue healthcare marketing down the line once this is complete.

 

Bimodal stimulation doesn't repair your hearing but it can reduce the hyperactivity in the brain that is your tinnitus. You listen to sounds through headphones that are alternated with precisely timed, mild electrical pulses delivered to the tongue. Neuromod's device delivers the electrical impulses to the tongue, Susan Shore's device to the cheek or neck. Susan Shore from the University of Michigan is working on a similar device and explains it as follows:

“The brain, and specifically the region of the brainstem called the dorsal cochlear nucleus, is the root of tinnitus,” said Susan Shore, the U-M Medical School professor who leads the research team. “When the main neurons in this region, called fusiform cells, become hyperactive and synchronize with one another, the phantom signal is transmitted into other centers where perception occurs.
“If we can stop these signals, we can stop tinnitus. That is what our approach attempts to do, and we’re encouraged by these initial parallel results in animals and humans.” - article / video

 

Autumnly, you're smart.

You make things easy to understand for luddites like myself.

Thank you for your clear, understandable breakdown of the theories at hand.

Sincerely, Daniel

 

Thank you very much Autumnly.

Mine is non-somatic, and SSNHL so not in the scope of things.

To me it reads like a very long shot, but it seems to have given a lot of members some real hope.

 

Jazzer,
Neuromod never stated that their device only worked for somatic tinnitus. Susan Shore's device is supposed to only be used for somatic. I believe the Neuromod trials had both somatic and non somatic. There is just some overlap in Autumnly's response between the two devices since they are similar. Hopefully that makes sense.

 

Neuromod's device was only tested on people with non-somatic tinnitus (if I remember the interview correctly), but that doesn't mean that it can't work for somatic tinnitus as well! Susan Shore's device was tested on people with somatic tinnitus. So these devices might work for you! Only very severe hearing loss could be an issue because you need to be able to hear the sounds.
Inclusion and exclusion criteria from their trial from January 2018 - February 2019 can be found here.

 

They were just given €24m of funding, I don't see any evidence of them running out of money.

 

No, that's not true -- if it was, they would be excluding ~80% of people with tinnitus, since Salvi in the 90s determined that's roughly the percentage of people who can modulate their head noise with muscle movements.

The actual exclusion criterion says

Sounds to me like they are just trying to exclude people who had a TBI or other significant physical trauma, since that's not a typical cause of tinnitus, and people with that kind of tinnitus might or might not have much in common with the rest of us neurologically

 

The exclusion criteria was interesting as this is the first time I read it. It did say they excluded people with somatic tinnitus from head and neck injury, but a large percentage have somatic tinnitus from hearing loss. I think it is somewhere around 2/3rds. I don't think it really matters if it somatic or not. They may find that they have to use different settings for somatic versus non or stimulate different areas.

I am just hopeful one of these devices gets released soon. Once positive outcomes are achieved I think the floodgates will open and you will see refining studies from all the researchers and we will be free from this hell. Big medical will get on board and push funding. Sadly, I think the tinnitus numbers are going to rise with all the young people blasting their headphones. I don't think we will have to wait 10 years. I would guess 3-5 at most. With the FX-322 drug showing positive results as well.

We all have a right to be skeptical, because we have heard this all before. This time I I think it is real. I no longer feel like we are the forgotten, but people are actually looking to help. I think I have stated before that I have spoken to Hubert Lim a few times and he seems passionate about this and truly wants to help. Susan Shore has dedicated a ton of research towards this as well.

My hope is that in the next few years there will no longer be a Tinnitus Talk.

 

Another day closes with no new information... Seriously need to engage with their clientele, we are major stakeholders after all.

 

This is what I am sort of guessing and hopefully the future may be this (which is of course hopeful speculation):

- Neuromod will be released. The results will echo what’s been achieved in the trials. Not everyone will benefit and some people may benefit more.

- This will open doors to test new parameters, researchers will see that bimodal stimulation works and hopefully it’ll come to light different methods for each individual that may help achieve significant reductions in most tinnitus patients.

- Susan Shore will continue her work, she has been studying tinnitus for years and her research will hopefully shine some more light on better methods to achieve better outcomes.

- Bimodal stimulation will become the only treatment that has proved to reduce the actual volume and intensity of tinnitus.

- Hair cell regeneration will take off after the trials. This will solve the root cause of most tinnitus, repairing what’s damaged and solve the reduced input to the brain. Frequency Therapeutics and Audion will be successful in trials.

- Other forms of damage to the cochlear are addressed. This will be resolved by Otonomy and Decibel Therapeutics (synapse repair, treatment of hidden hearing loss).

- If hair cell regeneration and synapse repair solve tinnitus, bimodal stimulation will be yesterday’s treatment, and be replaced with an injection to the ear.

If all goes successful, this may happen in the next 5-10 years. Also, I would also speculate that Josef Rauschecker's work may lead into something that may be developed - he has spoken previously about that many people have tinnitus but not everybody can hear it - those who can hear it have those ‘gates’ opened. Perhaps his work can figure out how to ‘close the gates’. There is also the $2 million funding to Dr. Tzounopoulos, the Greek scientist, again, something may open the door there.

So there’s a lot of hope and it seems possible that a cure may be possible in the next decade or sooner.

Unfortunately, many drugs fail, take years to come to market, the complexity of tinnitus is not to be underestimated, bimodal stimulation is also in the infant steps and has so far not to shown to be a universal treatment, the shockingly lack of funding being a huge issues.

There’s also a small chance of a serendipitous discovery, a bit like Trobalt and new anti-seizure drugs perhaps having a potential therapeutic effect on tinnitus.

There are so many reasons to be hopeful that we won’t suffer tinnitus for life but there’s also a lot of challenges and hurdles along the way.

Tinnitus research has got a lot better over the last 5-10 years and hopefully it’ll be a thing of the past.

Anyway, back to Neuromod, I think the stage where they are at now is determining what tinnitus sub-groups are likely to respond to Neuromod treatment - a question that is still unanswered and they may have info or ideas about this. The only thing I’m aware of is comorbid hyperacusis patients were labelled super responders.

There is also the question that if you are a non-responder - would that rule out bimodal stimulation never working for you or could a different set of parameters work for you?

There are so many questions I have that I think would be great topics touching areas that have been unaddressed. I wonder if they’ll arrange another Q&A because I sure have a tonne of questions that I think may benefit the community.