Lenire — Bimodal Stimulation Treatment by Neuromod

Hey Hans,
I think this is a very important observation you've made. Did you report it to Neuromod?

 

But this is again raises questions about Lenire's use of Bluetooth, even the newest protocols. It just adds another potential failure-point.

 

Yes, of course - I'm in contact with them every few weeks via email (which is kinda cool because my "official" treatment period ended back in January). Us early adopters willingly took a risk and I hope our experiences will be used to finetune the treatment for folks who come later.

Agreed, I still can't fathom why they chose Bluetooth. Its benefits are typically sense of fashion and convenience... but come on, with Lenire you have a white wire sticking out of your mouth anyway

 

Ey @hans799. What does Lenire so far do for your old tinnitus from 1990?

 

Been a while...

I did fly over the pond and had my assessment on February 20th. I was definitely a candidate for the Lenire device I was told.

I was supposed to go back June 6th to pick up device and be briefed on use etc etc. I received a telephone call telling me that that due to COVID-19 that all appointments for overseas patients have been delayed till the new year. I totally understand their reasoning and I'm not ready to fly at this time anyway.

Perhaps by 2021 any settings or kinks they are experiencing and getting feedback for will be resolved. Still a crap shoot but I honestly feel through these forums and others that tinnitus is getting its well deserved attention... Now time to throw some more money and science behind it and who knows, silence could be on the horizon...

 

How much does your tinnitus fluctuate with Lenire?

Susan Shore also believed that the tone of your tinnitus matters and your tinnitus has to be matched with a similar sound. However, the pitch is irrelevant according to Neuromod which confuses me.

 

Hello, I received a call from the Neuromod team. They told me that due to COVID-19 all appointments will be made remotely via video call. This is a dream come true because I wouldn't risk flying with the virus and all.

Am I the only one knows about this?

 

During my first go it was very perceptibly reduced. Even by the 2nd timing. I had to stop because the 2nd timing was spiking my 2016 noises - the 1990 ones were doing fine. When I stopped and Lenire's effect wore off, I was surprised just how much better the 1990 noises have been. It's hard to notice a change which occurs over 3+ months but when it changes back in a matter of days you sure detect it. I'd say total perceived volume reduction was 30-40%. Neuromod measured a MML decrease from 10dB to 6dB.

The 2016 noise fluctuates through its whole range. Its bottom end is a 0.5/10 tiny little chirp that's barely perceptible. Its top end is a 4/10 sharp 1800Hz tone which is fairly easy to mask during the day but sometimes keeps me up at night. "Wavelength" of the fluctuation is a few hours - sometimes it's good for a whole day, sometimes it changes in a matter of hours. The ends of the range haven't changed, but the "wavelength" sure did, it fluctuates a lot more when I'm on Lenire.

The 1990 noise is pretty stable. Sometimes a Lenire treatment spikes it but it invariably returns to baseline in a few minutes, or by the next morning.

By the way, I believe the 1990 noise is drug-induced while the 2016 one is headphone overuse induced. I was given erythromycin as a baby and it turned out I'm allergic to it. That might have screwed up something in my ear because I've had a host of ear-related issues all my life - tinnitus, crappy balance, misophonia.

 

Thanks @hans799. Glad to hear it helped you with your old and new tinnitus. So basically, Lenire is not something that leads to a permanent change in your tinnitus in a positive way, but acts a treatment that temporarily reduces it, right?

 

Yes. Partial, temporary relief is all that Neuromod promises - the word Lenire itself is just "soothe" in Latin.

However, you can just keep using the device and get the "temporary" relief as long as you want to. Neuromod's audiologist told me that there are people who started using their device back when it had a limited release as "MuteButton" back in 2015, and are still happy with it (and have been upgraded to the Lenire hardware in the meantime).

We'll get permanent relief when regenerative medicine becomes able to fix the underlying inner ear damage.

 

Does anyone know of any Lenire user experiences with reactive tinnitus or hyperacusis?

 

Would they then mail or courier the device back and forth? I assume this is only for EU (?)

 

I have both mild hyperacusis and reactive tinnitus.

 

Ok, so it works like that. Thank you so much for that insight! I guess you're right that we need to put our eggs in the regenerative medicine basket. I too firmly believe that it will work out for us in the nearby future.

 

Agreed. It looks like really effective treatment might eventually be multi-layered; Lenire and some type of pill or injection. In the meantime I'll gladly settle for a little soothing

 

Has Lenire improved either of those issues for you so far? Is your tinnitus reactive in that it stays at an increased level after sound exposure or does it immediately return to baseline after the noise ends? Thanks for the insight.

 

My tinnitus normally goes back to baseline quite rapidly after sound exposure. It goes crazy when I encounter certain sound or frequencies but even after all these years I am still trying to figure what these trigger noises are. The same sounds, let#s say for example a kettle boiling, do not always induce a reaction. Why is that?

I have only been back on the first settings for 11 days so it is probably too early to say for sure whether Lenire has improved my reactivity or not but I haven't noticed any obvious reactivity so far and the tinnitus is definitely quieter than usual. The level of masking I need to block it is lower than normal.

As for my hyperacusis, it is a due to a combination of acoustic trauma & barotrauma. I am not really bothered by loud sounds (except for certain frequencies like I said above) but I have a semi permanent dull pain in my left ear and my cheek. I don't think Lenire can do anything for that but it has not made it worse.

As a side note, I have been taking Gabapentin for the last 2 months and I have had a few days where I was almost pain free.

So overall I am not doing too bad!

 

Great to hear that you are experiencing improvement! Hope it continues for you!

I’m wondering if Lenire could be of benefit to me. I have reactive tinnitus only in one ear, but it immediately goes back down once external noise stops. Only problem is it reacts to pretty much all consistent sounds - almost like an overlay. For this reason, I’m thinking my form of reactive tinnitus is more aligned with hyperacusis. I think it may be due to sound sensitivity, but I could be wrong. If my reactivity were to decrease, I would be thrilled since my baseline is tolerable.

Please keep us updated with your progress.

 

043 LENIRE USERS
125 DATA POINTS
450 EMAILS
050 HOURS OF SKYPE CALLS
150 PAGES OF REPORTS
TOTALING
400 HOURS OF VOLUNTEER WORK

The wait was long as we worked diligently behind the scenes. But we are proud to finally present the results of our very own Lenire User Experience Group Study!

This was a patient-led study, completely independent from Neuromod, where we asked Lenire users to provide us with data before, during and after treatment. We then analyzed that data to make our own determination on Lenire’s effectiveness.

Although our sample size is not as large as we had wished, and we obviously cannot provide the rigor of a full clinical trial (with control arm), we hope you may find our outcomes interesting:



As you can see, our results are less favorable than what Neuromod has communicated, but still nearly half of our user group benefited from the treatment. We’ll leave it up to you what you make of these results; do let us know!

For those of you wanting more detail, please check out the attachments below.

• The Report 2 Summary provides more charts and graphs on effectiveness, also comparing between different patient groups.
• If you are a true statistics geek, you can check out the full Report 2.
• For more background information on the participants and their characteristics, read Report 1 or its summary version.

We want to give a HUGE thank you to @PeterPan. He spent literally 100s of unpaid hours recruiting and chasing study participants, designing and administering the surveys, monitoring data collection, painstakingly analyzing all the data and writing the reports. It was truly a gargantuan effort, and he did a splendid job!

We also want to thank @Autumnly for lending us her graphical design skills once again, creating the infographic above and making all the reports look pretty.

Finally, thanks to everyone who provided data for this study and/or reported on their user experience in the User Experiences and Reviews thread.

 

I just read this and I am now considering to treat my hyperacusis with Lenire.

 

Honestly, successful or not, this community gives me so much hope. Some of us need that hope.

 

Also congratulations to all the team that put all this titanic effort on this project!

 

It doesn’t improve hyperacusis, it just affects the tinnitus of hyperacusis sufferers more.

 

I guess I didn't get this right.

So the people still remained with the same level of hyperacusis?

 

Yes, it’s just more likely to decrease your tinnitus.

 

I'm devastated. Of course a decrease of tinnitus is more than important. However my basic problem atm is hyperacusis.

 

I’m curious as to why hyperacusis users saw a larger reduction in their tinnitus vs non-hyperacusis users. What factors would influence this difference?

 

That's exactly how I feel!

 

I only skimmed through the summary, so I apologize if I ask something dumb, but was there a separate question regarding changes in hyperacusis?

 

This study indicates how truly valuable Tinnitus Talk is. We would never have gotten this thoroughly researched, unbiased data through any other source. I intend to make an additional donation.

To summarize. If you undertake Lenire:
1) You have slightly more than a 2 out of 5 chance of a reduction;
2) You have slightly more than a 1 out of 3 chance of no change;
3) You have slightly more than a 1 out of 5 chance of getting worse (and in some instances being compelled to discontinue).

I am disappointed that there was no category indicating that it was eliminated completely.
Did Lenire ever warn prospective users that this 1 in 5 chance could occur? What concerns me is those who dropped out because of adverse outcomes. Does that mean that this worsening was permanent or long term?

I will be very curious about Lenire's response to all aspects of the report.

Do I want to spend in excess of $3,000.00 for a 2 out of 5 chance of improvement (and a 1 out of 5 chance of worsening?)

I am reminded of Clint Eastwood's classic remark, "Do you feel lucky? Well punk, do you?"
It takes all I have to maintain even a semblance of stability given my present condition.
Any worsening would be catastrophic with consequences that I prefer not to imagine.
Each of us will have to make our own carefully measured assessment before going forward with this.