New University of Michigan Tinnitus Discovery — Signal Timing

Better than nothing, of course, but think how dependent you become on such a device. Fear of it malfunctioning, breaking, becoming no longer available/replaceable.

 

I dream of the day I can become dependent on a device that will give me my life back, rather than an endless stream of SSRIs, benzos, sound therapy, hearing aids, Lenire, acupuncture, endless supplements and CBT, all of which helped not one whit.

 

I would take dependency on this device in a heartbeat if it helps.

 

My response to this is that both tinnitus and hyperacusis are generally a symptom of something else, which explains why they both onset together. Hyperacusis does not cause tinnitus, just as tinnitus does not cause hyperacusis; they are often caused by the same thing, most often hearing loss. So, 'curing' the symptom of tinnitus likely wouldn't improve hyperacusis from my understanding because for hyperacusis to be cured, you'd either need to target that symptom directly or resolve the root issue (i.e. hearing loss, which would theoretically resolve tinnitus / whole package of auditory conditions altogether).

But I could be wrong! Curious for any research people have on this.

 

Unfortunately, I think you are right with this. My hyperacusis + tinnitus always worsened when my hearing got slightly worse until the point that I now have days where I get pain and tinnitus spikes just from my own voice. Funny thing is when I’m outside with birds chirping, and cars driving past, I don’t have any pain at all.

I would gladly become dependent on Dr. Shore’s device just to get some peace back. Being able to read a book again, going to bed without having anxiety if the tinnitus lets you sleep at all & just having the ability to relax again and enjoying life...

 

Do deaf people have hyperacusis?

 

Great question, and if @linearb still had them when he was part of the trial, I would like to know if the device had some effect on his eye sight (it would be a dream come true if the device not only helped tinnitus but also visual snow syndrome symptoms).

 

Great to see that we are back in an era of hope and optimism.

But we'll stay a bit more sober this time round. Eh?

Roll on the roll-out.

 

I would love to be dependent on this. I would pay thousands a year to be hooked on it, if it works!

 

What's the problem? Like diabetics are dependent on insulin. Or someone with a bad vision needs eyeglasses.

This is a treatment for tinnitus. Hopefully it works.

 

Certainly. I did not mean to sound negative. I am just worried about the proprietary nature of the device. I just really wish this was less about money (patents) and more about helping people. Think polio vaccine.

Still, I am grateful and hopeful for the device.

 

There shouldn't be any "if it works" in our literature. It simply works. I know that in a year or two I see all of you in success stories saying that your problems are controlled/gone and you are enjoying your life.

 

I love your optimism. I still think there's gotta be a way we can target and eliminate the symptoms even if hearing loss is involved. I suspect mine came from a latent virus taking advantage of my compromised immune system (due to lack of sleep) which knocked out some of my hearing and increased my tinnitus massively. For me personally I'd gladly keep the mild hearing loss and be rid of the tinnitus.

 

I have two or three tinnitus tones. One can be manipulated with jaw movements and the other two are static. One is a tone, the other is a seashell like sound. @generalfuzz's ACRN helps with all of the tones except for the seashell sound.

Do you think Dr. Shore's device could help me?

 

No one can say for certain, obviously, but the one that is somatic (manipulated with jaw movements) has a very good chance, and the others may have a chance as well. If you read back through this thread, some explain how this is directly targeting hyperactivity in the dorsal cochlear nucleus (DCN) which is in the brainstem and where Dr. Shore has concluded that tinnitus "exists". So, if she is right, and you can get at least one of your tones to respond, there is a chance this overall calming of the hyperactivity could have a beneficial effect on your tinnitus as a whole. This is what we are hoping, however it's not guaranteed to help every tone and every tinnitus case out there, but it's our best shot so far.

 

It's very cheering to have summer on the way -- and Dr. Shore's device.

Inspiration or discovery or opportunity doesn't seem to come when you place an order for it. Usually there is some innovation which triggers several new ideas, a cluster of them coming together.

I would have thought that the breakthrough would have come from the "imaging the cochlea" side of things, but then the "magic molecule" idea took hold. Who would have guessed that the Dorsal Cochlear Nucleus, sound therapy and electrical stimulation would take centre field?

Well, if it provides some relief, enough to get on with life, then Great!

 

I have the seashell sound too! What does that mean?

 

That you have tinnitus.

 

Mine is worse after I am exposed to loud sound. I think it might be related to endocochlear hydrops or cochlear nerve inflammation in response to sound. It seems to be better when the tinnitus isn't as bad.

I don't foresee Dr. Shore's device helping with the seashell but it should help with the tones and dysacusis (distorted hearing).

 

Yep, vision has gotten significantly worse in the last 25 years too.

 

There is so much misconception and misinformation on this board. Dr. Hubert Lim had absolutely nothing to do with the current form of Lenire. It was developed long before he joined the company by Stephen Hughes and Ross O'Neill.

He gets a lot of flack for joining Neuromod. But what he's done is develop a device at the University of Minnesota that completely 100% cured someone of severe tinnitus and visual snow. I believe he is just using Neuromod so that he can bring the technology that cured @kelpiemsp to everyone that needs it. He's been towing the company line that their technology works and that kind of thing. But he has to, because they pay him.

It's a little disingenuous, but that doesn't negate the good work that he's done or that he's going to do if he gets to develop his treatment further. I believe that the technology that cured a member of this message board will be the next version of Lenire.

I'd write Dr. Shore and see if she's willing to divulge how much money she's raised to treat tinnitus, but she's not giving out ANY info at all these days, out of fear of upsetting the applecart regarding FDA clearance for her device.

This is the last email I got from her about a week ago:

Which brings me to my next point. If any of us are emailing her asking for updates on the device, we should just stop. She's not going to give away any info like she's done in the past, and I think that's because she's very engaged with getting the device through the regulatory process. She doesn't give any info away in that email, however, she does at least tacitly admit that she is working with the FDA. That's something we've always believed, but it's good to hear her confirm that!

 

I think everyone on this forum should leave Dr. Shore alone now... on the agreement that she books in for a Tinnitus Talk Podcast episode

I'm going to read the University of Minnesota thread now, @dj_newark.

EDIT:

So reading the University of Minnesota thread, there are certainly more commonalities with that device and Dr. Shore's than Lenire. What was interesting is that Dr. Shore's device targets the DCN and University of Minnesota's device the inferior coliculus.

University of Minnesota raised some issues with the blinding of the Dr. Shore's device.

Regarding the Phase 2 trial of University of Minnesota's device never being published, I would hypothesise that it failed and 1 member out of 24 had a super response. There was a member of the trial who said 'it did nothing' which is equally important, although generated little interest.

Either way, Hubert Lim left for Neuromod and never disclosed or wrapped up the trial. This is not good really and did a disservice to the community.

 

Yeah we really need Dr. Shore on the Tinnitus Talk Podcast. That ain't happening anytime soon, though!

You are partially right! There was a trial for bimodal stimulation for tinnitus by Hubert Lim that is listed as "withdrawn" with the reason "lack of funding or personnel".

Variability of Tinnitus Characterization Tools and Investigation of Audiovisual Integration in Tinnitus Perception

However, I think you are jumping to the gun saying that they "failed" heavily implying that was because the treatment wasn't effective. The trial could have been stopped because of a lack of funding. It's really shitty, but it does happen, that's reality. And it's not because he left the University of Minnesota, because he still works there. And according to this he's also studied at the University of Michigan. I wonder if he knows Susan Shore? That's pretty likely I think.

Here's what he's told me. It seems that you are making a lot of assumptions!

 

Aside from @linearb's reports on this device, it's still wild that we haven't heard any other anecdotes. I believe this has to do with strict confidentiality agreements put in place in order to best steward this device through the proper channels (FDA).

The data we all saw from the Palm Springs Hearing Seminar is sick. Dr. Shore's been at it for 20+ years. We just gotta hold on a little longer. Can't be too much more time until the peer reviewed study is out. It has been almost 5 months since she spoke at the conference. Hold on folks!

 

As a side note, is that a Susan Shore tattoo in your profile photo (obviously not real but still such a lol)?

 

When did the Palm Springs Hearing Seminar data come out? What did it say?

 

@linearb, how loud was the sound played on Dr. Shore's device? And is the volume of the sound based on past research (i.e. experimenting changing the volume of the sound and seeing results in animals), or is it just arbitrarily chosen somehow?

With Lenire I was able to adjust the volume myself...

 

Literally just look through the thread...? Come on, dude.

 

Same. I feel like I’ve tried everything. I don’t know how to feel if Dr. Shore’s device doesn’t end up helping whenever it gets released. Crossing my fingers it will be a success.

 

We can certainly deduce that the matter is already being handled by the FDA. Hopefully things won't get stuck, and we can book consultations and get the device soon. I don't care which ear doctor offers the device first, I will fly to the end of the world.