Lenire — Bimodal Stimulation Treatment by Neuromod

[PureNoise]

If bimodal stimulation works TRT is finished. She is the last person I would ask.

EXACTLY. If the world finds out this form of treatment works (and if so, there's going to be a huge investment in it beyond Michigan and Minnesota), NO ONE will pay $3,000-4,000 for counselling and white noise generators ($1300 each usually). TRT will be obsolete and people will purchase bimodal stimulation devices. Then the tinnitus organizations will be forced to adapt and say this is the new standard of treatment.

When I went for a TRT consult they repeated 8x "this is not a cure," "this won't change how loud your tinnitus is," "this won't decrease your tinnitus". I walked away.

Her business selling TRT is ruined if it does not work. Before Lenire, TRT was the only specific tinnitus treatment in town for decades. And it didn't improve tinnitus symptoms like loudness.

Why habituate to horrific tinnitus if Neuromod can leave you with mild tinnitus or in some cases completely get rid of the sounds?

 

[KMc24]

Months ago I talked about regeneration of the inner ear in the sound therapy center (I'm not going anymore). They looked at me like "that will be 100 years from now".

Don´t pay attention to them.

Neuromodulation has a chance to physically attack the symptom. It is not a "training" of perception. It's worth a try.

I spoke with my ENT 2 weeks ago about hearing regeneration. She said they can do it now. I talked to her about bimodal stimulation as well. She said what works for some might not work for others. Honestly I think we know more than she does. She did seem optimistic about future treatments though. I for one will be giving Lenire a go when it's released in the U.S. regardless of the naysayers.

 

[Tanni]

Thanks for all your comments guys, I feel a little bit better now.

She's NHS, so I don't pay her directly (although the government does), and she is a nice lady - I don't think she wants anyone to suffer, and actually has severe tinnitus herself. She just really, really believes that the only way to deal with tinnitus is through habituation and that there will never be a cure.

Well, I just don't want to believe that.

I really want a treatment for us, and I can't accept anything less. So I am so hopeful for this treatment, and I was disappointed that she was so dismissive of it.

Roll on the launch anyway, so we can know for sure

 

[spedgas]

Spoke to my TRT specialist today. She says Neuromodulation may well work for some people, just like all the other tinnitus treatments, but not for most. She said that the improvement on the THI scale is likely due to the fact that most people's scores naturally improve over time anyway, coupled with the placebo effect of feeling that they are doing something that will improve it.

On the plus side, she had not heard of Neuromod's new trials or the fact that they are being peer reviewed. However, she does know of some people who had success with the original MuteButton.

She advised me not to waste my money.

Just wanted to share this because my confidence in Lenire is a bit shaken - especially when a professional doesn't feel it will work - and thought I should pass this along for people to consider.

I think I will still go for it though.

If she wants a job in a year she should become a neuromodulation specialist. It won't work for everyone is a tag line associated with all tinnitus "treatments".

 

[Don Tinny]

I spoke with my ENT 2 weeks ago about hearing regeneration. She said they can do it now. I talked to her about bimodal stimulation as well. She said what works for some might not work for others. Honestly I think we know more than she does. She did seem optimistic about future treatments though. I for one will be giving Lenire a go when it's released in the U.S. regardless of the naysayers.

This experience with tinnitus and another bad experience that I had with a drug have made me get away a little from doctors.

Many times I have the feeling of knowing more about the subject than they do. They only defend themselves by saying "do not read so much, you are not a doctor".

 

[Don Tinny]

When I talk to people who aren´t doctors about my problem and mention "a new treatment that could be available in some time" they look at me with pity and invite me to not have so much hope.

Even people who do not have tinnitus conceive it as something "eternal".

It's a curse that we have to break. And I don´t understand these doctors who sentence the worst without being 100% updated.

 

[Ken219]

there will never be a cure.

That statement says a lot about one's mindset! One should never say 'never'! Can't predict the future!
Me bad I said never

 

[PeteJ]

This experience with tinnitus and another bad experience that I had with a drug have made me get away a little from doctors.

Many times I have the feeling of knowing more about the subject than they do. They only defend themselves by saying "do not read so much, you are not a doctor".

General physicians know less than ENTs and ENTs don't know much.
If you want help and assistance with habituation and welcome cynicism towards bimodal neuromodulation, just visit the chat. :-/

 

[Jab4]

That statement says a lot about one's mindset! One should never say 'never'! Can't predict the future!
Me bad I said never

We will increase our knowledge a million fold in the next two decades. We are living in the most exciting time ever in history. Anyone who says there won't be a cure, just makes me laugh.

There are things we can predict about the future. Its looking at the past exponential growth in certain sectors and extrapolate that into the future.

 

[Ken219]

@Jab4 'two decades'? I'm 70 now!

 

[Heinrich_S7]

It will increase our knowledge a million fold in the next two decades. We are living in the most exciting time ever in history. Anyone who says there won't be a cure, just makes me laugh.

Don't worry, society will catch up when the early 2020s get here. They're always late to the party but they all eventually do catch up.

 

[PeteJ]

What's the explanation why this would work or not work? Will the researchers be able to answer that?

Do they expect a pattern or a condition of the tinnitus being more likely to see results compared to another?

The TRT industry doesn't care if someone has success with it or not. It's about money. If it doesn't help, you don't get your money back, right?

I am afraid if they had some success here and there that it would be enough to market it. I sure hope it helps on a wide scale.

 

[Jab4]

That statement says a lot about one's mindset! One should never say 'never'! Can't predict the future!
Me bad I said never

@Jab4 'two decades'? I'm 70 now!

Don't worry Ken, there's new discoveries every day. So many I can't keep up with them.

 

[Don Tinny]

Do they expect a pattern or a condition of the tinnitus being more likely to see results compared to another?

Seems like young people with some degree of hyperacusis are better responders to the treatment. But it's in early stages. We will see soon.

 

[Candy]

@Tanni what became apparent fairly soon into this journey is that medical professionals have very little knowledge of advancement especially in the field of tinnitus which hasn't seen much success so far (which is what they've all been taught).

Two of my ENTs thought my jaw could be to blame, the other one told me it couldn't as it's a neurological disorder. Well, even on the BTA site it talks about the correlation to jaw. Whatever the origin of my tinnitus is, he should have known about somatic components but I genuinely believe he didn't. GPs barely have time to get through their patients in a day and they are generalists. Audiologists fare a bit better but if they haven't heard of recent trials such as the Michigan one, they shouldn't express an opinion.

I know NHS staff aren't financially motivated and whatever treatment becomes available they will be administering it eventually however your audiologist doesn't want you to get stuck in hoping for a cure, she wants you to habituate through TRT so she'll be well meaning.

Ask her to explain how bimodal neuromodulation works, that would put her knowledge in these possible advancements to the test?

 

[Allan1967]

In an earlier video by Tinnitus Talk, one of the Directors tried the device out...

https://www.tinnitustalk.com/threads/q-a-tinnitus-hub-meets-neuromod-lenire.32369/

Do we know what sort of sound was played through the headphones? Gentle tones? High pitched? Low pitched? A combination?

 

[COYS]

I hope so. My tinnitus is thankfully quite mild so not sure if Lenire would have a big impact on it?

 

[ThomK]

Does anyone happen to have a working link to the leaked Dr. Hubert Lim video?

 

[Markku]

Do we know what sort of sound was played through the headphones? Gentle tones? High pitched? Low pitched? A combination?

The audio that @Steve heard when he used the demo unit in the Q&A video was white noise based.

There was broadband noise in the selection that I listened to, across the spectrum (though I didn't get to test how far up there). They didn't calibrate it to my hearing.

I tried out a demo device, quite an interesting sensation. Not for long enough to have any effect and it wasn't calibrated to my hearing profile. The track I tested was white noise based, which spikes my tinnitus (makes it reactive). It was quite interesting that my tinnitus faded down and blended as I was listening, which I presume was an effect of the combined stimulation.

However, apparently there are several sounds you can choose from:

There were several sounds in the one that I tried out, which I believe is one of seven that you can choose from. Being an audio geek I can say that within the sound there were three separate audio techniques used.

A good question for a follow-up Q&A with Neuromod if they agree to do one.

 

[david c]

@Tanni

I know NHS staff aren't financially motivated and whatever treatment becomes available they will be administering it eventually

I agree with a lot of what you say, but unfortunately not this particular sentence. For a treatment to become available on the NHS it has to be NICE approved. As you are probably aware NICE are drawing up the tinnitus guidelines at the moment. The committee doing so have broken NICE's own rules by allowing members who derive financial benefits from selling CBT and Mindfulness on the committee. These members won't be keen on seeing bimodal neuromodulation promoted as a rival treatment. I expect their findings when published to downplay the role of any bimodal neuromodulation treatment in any future NHS treatment.

 

[OnceUponaTime]

If I could make my current tinnitus go back to mild, I would consider myself cured. Having mild tinnitus would have zero impact on my life at this point.

Me too. That would be nice...

 

[Allan1967]

The audio that @Steve heard when he used the demo unit in the Q&A video was white noise based.

However, apparently there are several sounds you can choose from:

A good question for a follow-up Q&A with Neuromod if they agree to do one.

Thanks @Markku. Steve says in his post that white noise spikes his tinnitus therefore making it reactive... Does this mean that Lenire would be OK for reactive tinnitus? Was that question asked at all?

And does anyone know if you can use Lenire at the same time as other therapies i.e. TRT for example? I'm just curious.

 

[TheDanishGirl]

Me too. That would be nice...

But what if it got worse? Mild tinnitus without the possibility of it getting worse, would also have zero impact on my life at this point, but mild tinnitus with the possibility of it getting worse, would still have a big impact on my life. If there is always the possibility of it getting worse, then there are many things in my life that I can't do.

 

[DaveFromChicago]

To Allan 1967:

In spite of my skepticism (because of over five years of total disappointment) I have been asking myself the same range of questions.

This only indicates how a deep seated region of my consciousness wants so desperately much for this to be truly sound-reducing (let alone totally eliminating; which, given that I have spent about $12,500.00 on utterly useless treatments and supplements, would be nothing short of a miracle).

As Admiral Farrgaut said at the mouth of Mobile Harbor in 1864 when he was told that the Confederates had mined it: "Damn the torpedoes-full speed ahead."

We'll have to launch forth into this treatment whatever the circumstances and just hope for the best outcome.

 

[JohnSV]

If Lenire works even just a little bit, we're going to be hit with a tsunami of reverse engineered products.

Timing of electrical stimulation of the tongue with tailored white noise is not rocket science.

We've got the smartphones, and the headsets already. What's needed is the app and the electric tongue stimulation device. Probably based on Meadow, Raspberry or the like.

The point is this. If Lenire is even slightly effective, the time window in which they will be able to charge €4000 is going to be short. Regardless of patents, trademarks and other barriers they try to enforce.

 

[NoBigDeal]

Does anyone know when Lenire will be available in France? And how much does it cost in France?

 

[Candy]

Thanks @Jason C.

Interesting as that would be a huge conflict of interest which should be declared.

Do you have any more info on this committee - would be interested to see some info to have a read, how much clinical input they're getting and from who etc.

We can also send them a freedom of information request if we think big decisions are being taken at the moment which could influence their decision to approve Neuromod. I don't know much about NICE processes.

 

[acute]

Neuromonics cost me about $4800 in 2007 (and revealed to me how capable I was of producing an amazing placebo effect for the first two weeks.)

I should be as skeptical as you after my Neuromonics experience 12 years ago.

Did Neuromonics do anything for you or was it a complete fraud and a waste of money?

Neuromonics follows the same principle as Neuromod? It was bimodal stimulation?

 

[Alex Matyjasek]

I don't see the big deal if Neuromod is not available in certain European countries. It costs €30 to €50 to fly to Ireland!

 

[Lilah]

Hopefully Neuromod will offer virtual follow-up appointments. Certain therapies such as neurofeedback offer virtual appointments.