Lenire — Bimodal Stimulation Treatment by Neuromod

[Allan1967]

Please keep us posted on if they are able to remove the white noise sound. I also get increased tinnitus from the same types of sounds.

They can.

 

[Heinrich_S7]

I remember you being pretty optimistic about Lenire, even saying that in mild cases it might knock the tinnitus out.

What changed for you to become so reserved about Lenire? Based on current user experiences it seems for 4 users it does something for their tinnitus in a positive way. The only exception being @Allan1967 for whom it spiked his tinnitus which we all hope will return back to baseline for him.

I was yeah. And Mentos, I want a treatment/cure for all tinnitus sufferers worldwide.

It's the complete lack of communication (silence) that's really putting me off at this point.

We went what, 10-11 months with complete silence from them? Almost a year. The device finally launches in June, only a handful of people are allowed to be funnelled in to get the device, more people than we thought are being turned away for having 'too much hearing loss', when Ross O'Neill said back in the interview with @Steve in 2018 that only severe cases of hearing loss would be turned away. Now we're seeing people with moderate hearing loss get rejected.

I will say this, if I knew I had a device that significantly reduced, or in some cases cured people's tinnitus entirely, and I knew for a fact through trial and error that it worked, I'd have cordial relations with other clinics and cordial relations with my patients. I wouldn't leave them in the dark for months and months and months if I had something revolutionary and groundbreaking. Not only to assure my patients that help is on the way, but for selling my device to as many people as possible so I could not only treat tinnitus, but also be filthy rich afterwards.

Maybe this is how Irish businesses handle relations. But I highly doubt that at this point. I'm beginning to think the reason they're dead silent and the fact they aren't saying a word to anyone is because they know it's not effective.

That's just my two cents, we're coming up on September soon and they still haven't said a word to us. I've tried calling them and their phone line is off.

Either this thing does work and Neuromod just has the worst public relations team in living history. Or we're getting duped again...

 

[kelpiemsp]

My tinnitus is freaking killing me right now. I'm quickly losing faith. I have a scheduled call with Neuromod next week.

I think it's the white noise hiss. Piano tunes and chirps are ok.

In fact if this persists I'm quitting.

You need to relax, seriously. You shouldn't be evaluating the effects of this until after you have fulfilled the entire protocol. Take it from someone who has spent nine months as a lab rat on this device. It won't make your tinnitus worse, permanently. It also won't be very effective if your always highly stressed. It also won't have a positive impact immediately either.

 

[linearb]

Huh. LOTS of the handful of anecdotes we have, saying short term increases in tinnitus and increases in hyperacusis?

That's scary to me to be honest and I'm glad I'm not using Lenire this year. The UMich device did NOT do that, and they told me if it did it was a sign that had the wrong timing. Take that as you will, but I'm waiting for a lack of "Lenire permanently increased my tinnitus posts" a year down the line before I think about this seriously.

 

[Kelvin]

Trouble for me is rain sounds are a trigger, especially shower water.

@Allan1967
Running water noises make my tinnitus react like mad. It actually ramps up in volume to compete. Flushing toilets are the worse . I can't tolerate White, Brown or Pink noise... They do the same... Even if it's played really quiet and not directly into my ear. I think it's all very person specific. Maybe specific to hearing damage?

Wishing success Allan with the Lenire. Thanks for the updates.

 

[spedgas]

Not even one current patient has reached the six week mark in treatment and this tread is again rife with conspiracy theories and accusations. All this is based on the 5-6 people who report here about their early use. People were sure to give PRP the full three months of "healing" time before passing judgement on if it was nonsense or not. We know how that ended. Give this treatment the same timeframe before passing judgement here.

 

[Bndsmheowqhe]

Part of any effective communication is paying attention to when the people are trying to politely clue you in that you're being a little obnoxious.

You're projecting. Please try to stay on topic and remember that people are allowed express opinions about Neuromod that may differ from yours.

 

[kelpiemsp]

Huh. LOTS of the handful of anecdotes we have, saying short term increases in tinnitus and increases in hyperacusis?

That's scary to me to be honest and I'm glad I'm not using Lenire this year. The UMich device did NOT do that, and they told me if it did it was a sign that had the wrong timing. Take that as you will, but I'm waiting for a lack of "Lenire permanently increased my tinnitus posts" a year down the line before I think about this seriously.

I think part of it, at least for me, was they were able to use timings customized to me. Instead of the one timing fits all approach here. I wonder if they cycle through timings.

 

[JayBowson]

Maybe this is how Irish businesses handle relations. But I highly doubt that at this point. I'm beginning to think the reason they're dead silent and the fact they aren't saying a word to anyone is because they know it's not effective.

That's just my two cents, we're coming up on September soon and they still haven't said a word to us. I've tried calling them and their phone line is off.

Either this thing does work and Neuromod just has the worst public relations team in living history. Or we're getting duped again...

I think people really need to relax about this communication thing. Even @Allan1967 who has been skeptical while using the device has said they respond back to him quickly when he makes an enquiry.

This thread is kind of hard to read sometimes.

Neuromod is a tiny company. They run a single rented room in a modest medical facility currently and a grand total of what? A handful of staff? Maybe? And this forum is a droplet in terms of its userbase and influence. The world of tinnitus sufferers is oceanic by comparison. And yet we've already been given over an hour long direct interview with the CEO. Do you know any other company large or small in this space that's given us that much? We aren't the arbiter of all things tinnitus here. We aren't entitled to command ANY time of this private company like some seem to think we should. I'm honestly just grateful we have any info at all and an impartial User Experience Group to keep us updated.

 

[JohnAdams]

What's up with a couple of users here that joined very recently and have only posted in this thread and seem to be ardent Neuromod apologists? They haven't interacted with the rest of the community in other places and seem to have all the answers.

Just FYI, you're glowing.

 

[Allan1967]

Huh. LOTS of the handful of anecdotes we have, saying short term increases in tinnitus and increases in hyperacusis?

That's scary to me to be honest and I'm glad I'm not using Lenire this year. The UMich device did NOT do that, and they told me if it did it was a sign that had the wrong timing. Take that as you will, but I'm waiting for a lack of "Lenire permanently increased my tinnitus posts" a year down the line before I think about this seriously.

Nobody has said it permanently increased their tinnitus. I'm now on my 3rd day of relative peace. Whether that's down to Lenire or just my cycle, who knows? But my measure of success as I've said before will be a reduction in tinnitus volume or pitch or more quiet days than horrible days in a row. So far my record is 7 days whilst not using Lenire.

 

[Nanny chocolate]

I went to Neuromod 3 weeks ago from the U.K.

I was not suitable for the device due to hearing loss, unfortunately.

The Medical Centre where Neuromod has rooms (plural) is large and with lovely grounds.

Neuromod was professional, they phoned the day before my appointment and gave advice on how to get to them.

They operate a paperless system but I was emailed AND postal mailed their audiogram readings.

Yes, they are a small team but this should not negate their ability to operate ethically.

Eve

 

[linearb]

This thread is kind of hard to read sometimes.

Agree, and mostly for the reasons you stated.

Neuromod is a tiny company. They run a single rented room in a modest medical facility currently and a grand total of what? A handful of staff? Maybe?

Well, we don't know, they're not forthcoming, and beyond saying that they had early angels with tinnitus and are now VC backed, we don't have much insight into their financials.

And yet we've already been given over an hour long direct interview with the CEO. Do you know any other company large or small in this space that's given us that much?

Us specifically, no, but the kind of outreach, videos, etc they are doing is the bare minimum for what a net-saavy startup should be doing in 2019. I've worked in these spaces, I think they're mostly doing and saying the right things.

On the other hand, I once worked for a medical non-profit that made a tool to improve certain outcomes. You know what we published? All of our peer reviewed research, unredacted, in major journals. As far as I can tell, Neuromod has made a bunch of claims about what their data shows and published summaries and pretty graphics... the normal things startups do to build traction, but not the "normal" R&D path to serious good data.

It might work fine, I'll believe it when there's longitudinal peer reviewed data. My skepticism has less to do with pessimism, and more with the sheer number of tinnitus devices that have been released over the years.

I'm now on my 3rd day of relative peace. Whether that's down to Lenire or just my cycle, who knows? But my measure of success as I've said before will be a reduction in tinnitus volume or pitch or more quiet days than horrible days in a row. So far my record is 7 days whilst not using Lenire.

Yup; again, I'm a data and numbers guy, so anecdotes will never really sway me, but what you just said is that you have an improvement that had gone on 3 days, compared to sometimes getting a quiet week without treatment.

In my case, when I used the UMich device -- I'd never had more than a 3-4 day run of "quiet" tinnitus, so when my tinnitus got "quiet" like clockwork at the 2 week mark and then stayed that was for 18 days until I stopped using the device, I found that somewhat convincing. (It's still just one random anecdote, and I should not give it any special weight just because it was my own experience, but, that's not really how brains work).

 

[GlennS]

You need to relax, seriously.

This is an experimental device. For those who have been suffering for years and years, why would you want anything to even remotely risk sabotaging the regimen? We all know that when we shift our minds to "test" or "sample" our tinnitus that we undo habituation and spike our anxiety/depression. I have to imagine that doing something like this in the start of the treatment is going to actively interfere with its ability to do its thing.

I made the analogy to dieting and getting on the scale. The most demoralizing period during dieting is early on when it seems like no change is taking place even though you're busting your ass. Even when the numbers start to come off it takes a loooong time for the pants to start to loosen up. I'm not a doctor but I think any sort of gradual health improvement manifests itself like this. The watched pot never boiling phenomenon. But this is why I think the forum shouldn't pressure anyone to report back in mid-stream.

 

[Allan1967]

Agree, and mostly for the reasons you stated.

Well, we don't know, they're not forthcoming, and beyond saying that they had early angels with tinnitus and are now VC backed, we don't have much insight into their financials.

Us specifically, no, but the kind of outreach, videos, etc they are doing is the bare minimum for what a net-saavy startup should be doing in 2019. I've worked in these spaces, I think they're mostly doing and saying the right things.

On the other hand, I once worked for a medical non-profit that made a tool to improve certain outcomes. You know what we published? All of our peer reviewed research, unredacted, in major journals. As far as I can tell, Neuromod has made a bunch of claims about what their data shows and published summaries and pretty graphics... the normal things startups do to build traction, but not the "normal" R&D path to serious good data.

It might work fine, I'll believe it when there's longitudinal peer reviewed data. My skepticism has less to do with pessimism, and more with the sheer number of tinnitus devices that have been released over the years.

Yup; again, I'm a data and numbers guy, so anecdotes will never really sway me, but what you just said is that you have an improvement that had gone on 3 days, compared to sometimes getting a quiet week without treatment.

In my case, when I used the UMich device -- I'd never had more than a 3-4 day run of "quiet" tinnitus, so when my tinnitus got "quiet" like clockwork at the 2 week mark and then stayed that was for 18 days until I stopped using the device, I found that somewhat convincing. (It's still just one random anecdote, and I should not give it any special weight just because it was my own experience, but, that's not really how brains work).

So where is the UMich device now?

WTF was the point of hiring Hubert Lim?

 

[GlennS]

As far as I can tell, Neuromod has made a bunch of claims about what their data shows and published summaries and pretty graphics...

I agree that the lack of peer review only fuels negative speculation. The most thorough info they "released" was their PowerPoint presentation which they forced offline. That is the biggest red-flag so far, IMHO. However, if we follow the trend-lines of this thread, what tends to happen is people lose patience, assume the worst, and then BAM, what we've been waiting for happens, making us look like idiots.

So the pattern is that they ARE getting things done, just not on our chosen timetable, which is actually not uncommon for startups (Tesla being a great example).

 

[linearb]

So where is the UMich device now?

There's a whole thread for that, but in general they are in the thick of a Phase-II and are still working out if they'll be able to get FDA clearance before that completes, or not. They are also actively recruiting for another trial to further refine timing protocols, and they have partnered with a small US-based medical equipment manufacturer.

So, I'd say they are "substantially further from market than Lenire, but with a roadmap that looks a lot more convincing from a SBM perspective."

Note: I want Lenire to work. Since you already have it and are probably as invested as I was to be a lab rat at UMich (my out of pocket expenses were $10-12,000), I doubly want it to work for you. I want Lenire to have good reasons for not publishing more than they have, etc.

I am in no way sitting here pissing on the thing hoping it doesn't work, just giving myself my daily talking to to remind myself why I am currently on a plane to Colorado, and not Ireland :-P Please keep us updated.

So the pattern is that they ARE getting things done, just not on our chosen timetable, which is actually not uncommon for startups (Tesla being a great example).

Tesla has done a lot of really, really stupid stuff, though, to be fair. I would not trust them to make medical devices, nor especially trust their vehicles to be good ROI at this moment in time.

It's not about timetable for me -- Lenire is much more aggressive than UMich. I don't see that as a plus.

 

[Ivkopivko]

How do you know that Dr. Berthold Langguth didn't know about it? Any proof?

I just dropped him an email where I said this is about Len.ire by NMD and asked him if he could share if it will become available in Germany in a reasonable timeframe.

He answered in very polite way, saying that even though he's closely working with NMD, he can't and couldn't say any estimate and suggested to deal with NMD directly. (I don't know if he has any financial interest there, or is just a scientific member of board or what kind of agreement they have).

To be honest, I don't know what all of this means and I personally think that at least some communication to us would be fair enough and won't allow those conspirations and constant changes of mood in this thread and in our minds.

Just one post, tweet, webpage headline or mass email with wording similar to: "Cheers guys, we have strong evidence that we can help you. We obviously cannot guarantee that for everyone but numbers are promising. Hang in there as It's clear that we're now doing the soft launch and once we're confident enough, we will go full force. Just to mention, we're now running TENT-A3 (sorry, our copywriter made an mistake and thought this is commercialization...) and we might probably refine the device and timings in next 6-12 months. Thanks for staying with us and dont commit suicide at least until March 2020 as at that time we're expecting to have 15 clinics in 6 European countries and deep discussions with FDA in place as well. Now piss off and enjoy your summer, as this might be the last one with T!"

 

[hans799]

You are advised to do as little as possible, especially avoiding mentally taxing things. I asked about reading; they don't really know to be honest, they don't explicitly say not to read, but repeated that it was best to do as little as possible. In fact she went as far as to say that it was best to just "zone out" during the session.

I think of it like a 30 minute meditation session. I would hate to read or use my phone, to later find out I was disrupting the treatment and wasting my time and money.

I have started to think about doing it whilst walking the dog, but I'll confirm with Neuromod at my next review that it's ok.

I was thinking of using the Neuromod time as a formal meditation session (e.g. by using the chirping and buzzing of the device as the meditation object). Seems like an excellent way to force-build a daily meditation habit. Do you think this is allowable?

Also, I see conflicting reports. Are you supposed to use the device for 30 or 60 minutes per day?

 

[annV]

Also, I see conflicting reports. Are you supposed to use the device for 30 or 60 minutes per day?

Official guideline is 2x 30 minute sessions per day.

 

[Cojackb]

They do allow 2 x back to back sessions if it is more convenient. Although the device is only configured to run treatment for 30 minutes at a time, so they advise you'd have to push the play button again as soon as the first 30 minutes has finished.

 

[GoatSheep]

So with these bimodal stimulation devices I thought I read somewhere that if there is a physical cause for your tinnitus they won't work. Is this accurate or am I mistaken?

In my case bilateral osteomas.

 

[ruud1boy]

I'm not trying to be negative, but is the Lenire returnable for a refund if it doesn't help your tinnitus? I had a SoundCure and I returned it after 2 months for a full refund. I was just wondering what the policy was on the Lenire. I do hope it works for most people as we need something for relief.

In a word, no. Any payments made are non-refundable. The 12 month payment plan is only offered to residents of the Republic of Ireland. Anyone else can pay in 4 chunks - €250 at assessment and then €750 at each of the three follow-up appointments and if you want to stop the treatment before completing the payments, they won't chase for any outstanding monies owed under the payment plan, as long as you return the gear to them in an acceptable condition.

 

[ruud1boy]

@Redknight @Allan1967

The way you describe the sounds provided by Lenire makes me think of those you can get from a free app called ReSound Relief. White noise, heavy rain, chirping, piano chords...

Please, give it a try and let us know if they are the same. Could you?

I have the ReSound app on my phone, but it's not one I really use. Is there one of the soundscapes available via that app which incorporates all these bits? What's the name of the one you think might resemble the noise Neuromod are giving us?

The 'chirping' isn't birds chirping - it's just electronic beeps and blurps and whatnot. Like a drunk R2-D2. I assumed that it's that element of the sound stimulation that's synced to the tonguetip pulses.

 

[ruud1boy]

It's the complete lack of communication (silence) that's really putting me off at this point.
I'm beginning to think the reason they're dead silent and the fact they aren't saying a word to anyone is because they know it's not effective. That's just my two cents, we're coming up on September soon and they still haven't said a word to us. I've tried calling them and their phone line is off.

Given that you are not one of their patients / customers as yet (I assume?), what do you want them to be doing from a communication perspective? Putting out generic statements restating what's already on their website?

 

[Lilah]

So with these bimodal stimulation devices I thought I read somewhere that if there is a physical cause for your tinnitus they won't work. Is this accurate or am I mistaken?

In my case bilateral osteomas.

Yes, this is my understanding as well.

 

[Heinrich_S7]

Given that you are not one of their patients / customers as yet (I assume?), what do you want them to be doing from a communication perspective? Putting out generic statements restating what's already on their website?

A simple tweet every month or two giving us updates on approval in other countries. Progress with the FDA. And further data collected from patients post launch.

I don't think I'm asking for too much. =p

It's better than complete radio silence.

 

[dayma]

A simple tweet every month or two giving us updates on approval in other countries. Progress with the FDA. And further data collected from patients post launch.

I don't think I'm asking for too much. =p

It's better than complete radio silence.

I don't see anything submitted to the FDA from them. It's all public info if you want to look.

 

[GoatSheep]

Yes, this is my understanding as well.

The issue with mine is there's no real proof whether it's the cause or not. So I wonder if the cause has to be definitive?

 

[Heinrich_S7]

I don't see anything submitted to the FDA from them. It's all public info if you want to look.

That is concerning, I've already submitted to the fact that I'm going to be waiting eons for this thing to come to North America.

But the good news is my tinnitus is a lot better ever since I started NAD+ supplements, I can enjoy life at the moment and do the things I want to do, I have a hiss in my left ear when I go to bed at night still but I can deal with it now. I'm hoping I won't even need Lenire.