Lenire — Bimodal Stimulation Treatment by Neuromod

Why is MML important? If your tinnitus is intrusive, the volume doesn’t matter. Why is this concept so difficult for people to grasp?

MML is a poor measure. The MML can vary constantly by your mood, the tone of your tinnitus, and type of sound masking. For example... the wrong tone could never mask my tinnitus before.

 

Surely MML and THI are two sides of the same coin? If your tinnitus is not as loud as it was previously, you're going to be less distressed by it I would think.

Working it the other way should work the same, but feels a bit more theoretical - if your THI score goes down for whatever reason, then by definition you're not as stressed by your tinnitus so the noise should decrease - *should*.

Also, I love Irish Ken. He was the one from the testimonials that I identified with this most, as his description of his tinnitus experience was pretty close to my own. To hear that he's seen a 17 dB reduction is fkin awesome. Still struggling to keep a lid on my rising hopes for this thing. Trying to brace myself for the possibility that it'll do nothing for me but empty my meagre savings account.

 

I agree with you to an extent, but @kelpiemsp also makes the valid point that MML is also affected by the tone of your tinnitus. MML is a very particular measure, whereas THI is far more encompassing of overall suffering.

I would argue that THI is the most holistic, and clinically relevant, measure of tinnitus suffering - which is also most likely why Neuromod are leading with that as their key measure of improvement.

 

Actually tinnitus volume and distress are not always inextricably linked. Distress/handicap reduction is generally accepted as the best indicator for treatment efficacy.

However, of course members (myself included) of this forum want to see a reduction in our tinnitus volume which would give us the warm fuzzy feeling that our brain is overcoming this awful condition.

 

Could you show me where the data is?

 

I don't feel handicapped by my tinnitus, I can work and earn well, I have a family and newborn kid, I sleep well. But tinnitus is annoying and the only way to reduce the annoyance is to reduce the noise level / MML. I don't care about THI.

 

Page 9 of this thread - there’s a PDF attached.

 

"Handicap" is a weird term. People can and do achieve great things despite their handicaps. Think of Beethoven's creeping deafness. Think of Milton's blindness. Think of Rick Allen the one-handed drummer. Think of Stephen Hawking. What is life-destroying for one person is a surmountable hurdle for another.

I don't know how much better off my life would have been had I never developed tinnitus, but at the same time I can derive some sense of pride for having accomplished certain milestones in life despite it. Those without these challenges go through life in easy-mode in comparison. It's not the life I would have chosen by a long-shot but there's a way for me to put a bit of a positive spin on it. I guess you could say it's helped define me. I could function a hell of a lot better than I do now, and yet at the same time I know that if I trapped most normies in my own body they'd not be able to function nearly as well as I do.

 

I really hope this works. I'm looking forward to it being released and giving it a go.

 

Best get saving then... I’m not going to be able to afford it until at least 2021.

 

The testimonials weren't that encouraging... I'm sure they picked the best two outcomes... Dorothy and Ken.

Dorothy said it helped a little in changing her hiss into a tone. Not sure if that's good or bad. Nothing said about loudness or frequency.

Ken said he no longer has spikes which is a good thing but no mention about loudness or frequency.

Their testimonials really lacked details about the results. That's not a good thing.

Hope I'm wrong.

 

Go back two pages and read the post by @Ed209 and someone talked to Ken on Facebook. All the information you need is there. This has all been discussed ad nauseum, but nobody bothers to read the thread.

 

I spoke with my ENT about it today. She said the results will vary from person to person. What works for some won't work for others. As of now there isn't a silver bullet unfortunately.

 

There are something like 200 possible causes of tinnitus, so yes, the results will vary from person to person. I don't even think we know enough yet about neuroplasticity to make it work for everybody, but 86% success/improvement rate, if the numbers add up is pretty damn good. The good thing is once Neuromod hits the market and show some success big pharma is going to want in on this and there is going to be an explosion of companies wanting into the tinnitus treatment space and there are many already.

If Neuromod doesn't work for you it could be Susan Shore's device or it could be some of the hearing regeneration drugs that are currently trialing. I think this time there is hope and this isn't a bunch of snake oil that we are used to.

 

Did your ENT actually know of Neuromod?

 

Yes she knew of it. She said that she recently attended a conference on tinnitus. There were two presenters. She said she would link me up with them if I would like. They have a facility about 45 minutes away from where I live. They spoke about bimodal stimulation. That's when she said the results vary from person to person. She was up to date on everything.

 

If they are smart, which of course they are, they will do their own financing or find a lending partner to finance the device to patients.

 

Why does it vary so much from person to person? Does Neuromod have any clue? Whom (apart of those with hyperacusis) it will help at the end, any ideas?
How much and what kind of improvement can you expect?
You have to pay probably 3000€-3500€ to find it out, is that fair?

So many questions, and no clear answers

Also it’s a pity that Neuromod doesn’t attend the this year's TRI conference. So if they found an effective treatment, why not share the results with the global experts to find even better treatments which might help the majority of patients?

As of today, there is nothing reported about Neuromod's new treatment in the German media. No articles, no interviews, no promotion. And none of the local experts reported anything about it or offered any criticism, which is what they normally do about new treatments.

It seems they don’t care about it and perhaps don’t take it seriously.

 

Dr. Schaaf, head of a tinnitus clinic and psychotherapist in Germany, wrote about Susan Shore’s Phase 1 trial and literally said at the end “having hope is unwarranted” and then promoted CBT instead. They know about bimodal stimulation but they’re already trying to make it look like it’s just another scam. They are keeping tinnitus sufferers dumb on purpose and I don’t think they will say anything positive about Lenire once it launches in Germany.

 

Maybe it's a slow process. Yesterday I found the first Internet result about Neuromod's Lenire in Spanish language.

 

Sorry to barge in... are we any clearer on when we can see this being released?

 

Also, for the rest of the world, Lenire is not such an important event as it is for us.

 

I spoke with him once. He has no clue about anything. He wanted to send me to a psychiatry and could not understand my pain. I have multiple high-pitched tones and he did not see my anxiety. He wanted to get rid of me and when I had not left the building, he would have closed me in a room to pick me up by people to bring me to a psychiatry. It was pure horror.

They charge 500 Euros per day in her clinic to do mainly psychological counselling. And you do some acustic exercises. This is scam, at least for severe cases.

Of course they rate anything else as scam. Because they would lose their business model.

Nevertheless I am also very skeptical about Lenire. The testimonials are not good enough. You will always find someone who has an improvement. But if it would help many people to a large amount, we would already know.

 

But we do know to an extent?

 

https://www.ncbi.nlm.nih.gov/pubmed/?term=Acoustic+Coordinated+Reset+Neuromodulation

ACRN did have peer reviewed results. An ENT I saw was quite disparaging of them.

 

500 euros a day.

Boy did I pick the wrong profession.

 

I had an opportunity to get in touch with a person who was part of TENT-A1. The effect was "significant", no more spikes and is now back to normal life. The result remained the same once the trial was over, no setbacks/loudness increase.

I believe there is reason why those who attended trials are not speaking publicly. Neuromod might have also asked trial participants to sign a non-disclosure agreement. I believe there is a good reason behind why only testimonial videos are available for now.

All I want to know is if we will need to wait for adoption by ENT specialists/ambulances in our countries, or will we be allowed to travel to Ireland, have an appointment at Neuromod, do all the measurements, get the device set, get drunk and return home to start the treatment...

Oh god I wish so much that this won't be scam, tinnitus took away everything that matters to me - my passion, willingness, always cheerful personality, hobbies, activities with my beloved ones and friends... I just want my life back!

 

I sent the last PDF of Neuromod to the most renowned tinnitus audiologist in Buenos Aires and he told me "It's a good study, very interesting, although it's still experimental, I hope we'll see the results in the near future".

I did not want to bother him anymore, but I did not understand why he considers it so experimental.

 

But if the testimonials were great people would be crying 'fake/paid actor's!

On a same note what is taking so long?