Lenire — Bimodal Stimulation Treatment by Neuromod

[Josh1994]

@Josh1994 thank you for your review, I appreciate how long and detailed it was.

You mentioned being able to take some questions. Did they say by how many dB your tinnitus was reduced?

So my MML at the start was in the 30 dB range (I can't remember the exact number as it was 12 weeks ago) and I got azn overall reduction of 8 dB, however this would suggest that the sound level has reduced by nearly 2 fold, but I can certainly say it doesn't feel like that. The sound hasn't changed that much, it's more the tone has changed to a smooth hiss and the pitch has reduced.

@Josh1994
What was your initial MML?

Hope the above answers your question

 

[UKBloke]

I'd much rather accept the "gold standard" evidence of the User Experiences thread - the people who invested their own time and money in Lenire and do not have any reason for bias - rather than just believing what Neuromod - who have an obvious commercial reason for bias - say. The User Experiences thread suggests that the length of time someone has had tinnitus does matter.

I agree, and I'm a little disheartened, however, I want to wait for publication of the Lenire User Experience Group survey (next April?) before making a final judgement.

 

[pinklights98]

Does anyone know if Lenire will help with somatic elements of tinnitus as well? My tinnitus is severely somatic, despite being noise-induced.

 

[EDDTEKK]

Still waiting for a REAL & SIGNIFICANT success story using Lenire.

 

[Pero1234]

I agree, and I'm a little disheartened, however, I want to wait for publication of the Lenire User Experience Group survey (next April?) before making a final judgement.

That's what I was going to say.

I think the group survey is a fantastic idea! It can really help us us to decide for ourselves.

Looking forward to the results!

 

[GlennS]

Still waiting for a REAL & SIGNIFICANT success story using Lenire.

Now that we know we're going to have to rely only on Tinnitus Talk, maybe the thing to do is perform more outreach to bring Lenire users into Tinnitus Talk to participate in the user reports.

 

[HootOwl]

How many people have we had so far reach the 12 week period?

 

[Ruse]

Still waiting for a REAL & SIGNIFICANT success story using Lenire.

For anyone who has been following the trial data (specifically TENT-A1 Arm 1 and TENT-A2 Arm 1) there were only 5-6 patients with severe tinnitus (defined as THI>=58) who had a reduction of 50% or more in THI score after 12 weeks of treatment.

Even going by Neuromod's data, the stories of severe sufferers having dramatic reductions in their tinnitus with Lenire are unfortunately going to be few and far between.

What we are beginning to see with improvers is that although many are not seeing a 'significant reduction', many are getting some reduction in volume and are left in a better position.

Whether one feels this is worth the trip and/or money is completely subjective and I think anyones decision on this should be respected, though as others have mentioned I personally believe this is beginning to look like a step in the right direction after years of disappointment.

 

[Tame]

I think I figured out something. I see from people's experiences that Lenire might work for tonal/whistle tinnitus but not for hissing tinnitus, did anyone notice anything similar?

 

[ChrisBoyMonkey]

I think I figured out something. I see from people's experiences that Lenire might work for tonal/whistle tinnitus but not for hissing tinnitus, did anyone notice anything similar?

I haven't seen any indication of this. Neuromod has said many times that it doesn't matter what type of sound(s) a patient has. The data being collected by the forum might be able to provide a little more insight on this, and maybe the data from them too.

 

[JohnAdams]

Looks to me like this is a corporate rebranding of the failed MuteButton which is trying to piggyback off the upcoming Susan Shore technology.

 

[threefirefour]

I think I figured out something. I see from people's experiences that Lenire might work for tonal/whistle tinnitus but not for hissing tinnitus, did anyone notice anything similar?

If anything it seems to change tones to hisses. In terms of reduction, I think it's making the tinnitus quieter by making it less ethereal.

 

[AfroSnowman]

severe tinnitus (defined as THI>=58)

I know THI is the standard measurement tool, but thinking about the odds of having a substantive response to the treatment based upon the THI severity scale is unsatisfying.

For me I have been doing better dealing with my tinnitus which is reflected on my THI score even while not having any change in what is a loud 24/7 noise festival in my head. My reaction to it has lessened from high moderate/severe to low moderate-high moderate.

From the narrative developed here we wouldn't have expected me to get much out of it when I had a THI score of severe, but now that I am partially habituated and therefor less distraught I would expect a more substantive improvement, even though in both cases my actual symptoms are the the same. Seems weird right?

I wish that both Lenire and Shore's device would lead with results in terms of changes in masking levels and actual volume and use THI as a secondary measure of success.

 

[Tame]

I haven't seen any indication of this. Neuromod has said many times that it doesn't matter what type of sound(s) a patient has. The data being collected by the forum might be able to provide a little more insight on this, and maybe the data from them too.

Neuromod can say whatever they want to say. We haven't seen any evidence of real / significant improvement from patients on Tinnitus Talk, so how come we are going to rely on their data or even what they are claiming?

 

[aHuman]

For what it is worth I keep poking at the Neuromod schedulers every 2-3 weeks and I just got a response back from them. They confirmed that they are still keeping people in line for when they signed up (come on already, it was July) and that for me they would be giving me a date in early 2020.

More interesting, though only mildly so, the faceless person that responded to my email had not heard anything about @Redknight's report that they were planning on rolling out remote updates. Fingers crossed that the email person isn't in the loop because I'm on the far corner of SE Asia and the commute is going to be a bitch.

Where in SE Asia are you? I'm in Bali and thinking of doing the trip to Neuromod in Ireland next year.

 

[ChrisBoyMonkey]

Neuromod can say whatever they want to say. We haven't seen any evidence of real / significant improvement from patients on Tinnitus Talk, so how come we are going to rely on their data or even what they are claiming?

That's not even what the question was about.

You should take the time to look at things more thoroughly in the future.

 

[GlennS]

That's not even what the question was about.
[/QUOTE
Who cares? That's still the overall issue being discussed.

 

[Bartoli]

Looks to me like this is a corporate rebranding of the failed MuteButton

Why have they pulled MuteButton off the market then? They could've been scamming people for an extra 4 years by now if their objective was to sell us something that they know is ineffective.

 

[JohnAdams]

Why have they pulled MuteButton off the market then? They could've been scamming people for an extra 4 years by now if their objective was to sell us something that they know is ineffective.

It was getting horrible reviews. Now it's

 

[GlennS]

Why have they pulled MuteButton off the market then? They could've been scamming people for an extra 4 years by now if their objective was to sell us something that they know is ineffective.

Because Neuromod is not being deliberately malicious. They mean well, but they are having difficulty producing a device that works well enough. They went back to the drawing board, felt they reached a level of improvement good enough to try again, and now here we are.

And I'm not sure they "know" it's ineffective. I think they know it's borderline, the way all commercial tinnitus treatments have been riding that razor's edge of placebo effect since the dawn of time. This is also why they are mixing up the treatment at the half-way mark, because they know a single stimulation parameter is plateauing out at a weak level.

 

[El BUZZ]

In words of a friend who's not registered in the forum and has completed the treatment:

"It does enough to feel like a lot"

Guy's on his fifties, severe tinnitus and dealing with it for years now. Against all the odds.

 

[Bartoli]

And I'm not sure they "know" it's ineffective.

I didn't mean to say that Glenn. I too believe their intentions are legit. Too soon to hit the market? Maybe. In need of cash and pressed to roll out because of the stakeholders? I don't know if and how much money they received via grants and funding. So maybe that, too. But how would they've been able to hire Hubert Lim if they were truly broke? Surely Lim did a background check before putting his name and scientific reputation on the line?

 

[ajc]

In need of cash and pressed to roll out because of the stakeholders?

Neuromod recently raised €8M in funding, and before that they had also raised millions more in funding. They are not short in cash.

https://www.businesswire.com/news/home/20190925005867/en/Neuromod-Successfully-Closes-€8-Million-Capital-Raise

 

[GlennS]

In words of a friend who's not registered in the forum and has completed the treatment:

"It does enough to feel like a lot"

Guy's on his fifties, severe tinnitus and dealing with it for years now. Against all the odds.

Please ask him to join and provide more detail.

 

[Bartoli]

Neuromod recently raised €8M in funding, and before that they had also received millions in funding. They are not short in cash.

Thanks for digging that out. I honestly don't know if that's a big amount of money for a small business, but let's assume they're not strapped for cash.

Then it makes no sense they would go to market with a product of which they feel it's unfinished.

 

[threefirefour]

In words of a friend who's not registered in the forum and has completed the treatment:

"It does enough to feel like a lot"

Guy's on his fifties, severe tinnitus and dealing with it for years now. Against all the odds.

Is there a way you can confirm this?

 

[Bartoli]

Is there a way you can confirm this?

 

[El BUZZ]

Is there a way you can confirm this?

Only thing I can do is to share these two chunks of Messenger conversation. I can't provide the the guy's identity without his permission but he may eventually chime in.

 

[threefirefour]

Only thing I can do is to share these two chunks of Messenger conversation. I can't provide the the guy's identity without his permission but he may eventually chime in.

View attachment 32899
View attachment 32900

Looks good. Thanks for that

Did he say how it helped?

 

[El BUZZ]

Looks good. Thanks for that

Did he say how it helped?

No problem, mate.

He didn't tell me how it helped. He's somehow hard to reach but my trust in him is rock solid.
I am going through such a hard time that I need to believe there is a chance of Lenire being able to improve my tinnitus. I don't know how I would be managing my current mood and tinnitus level if there weren't something like it in the air. Trying to be as cold minded as I can I think this device represents potential possibilities for some of us to have some decrease in our suffering. It will be just the matter of giving it a try. Anything else is just theorizing and smoke.