Episode 7: Neuromod's Lenire — Treating Tinnitus the Bimodal Way

[Tinnitus Talk]

Hi everybody!

Well, this might be our most long-awaited episode yet. It covers the topic of our currently most active thread, which has been viewed over half a million times. We mean of course Neuromod's Lenire treatment. Check out the ongoing discussion about it here.

It's an extra-long episode, because so many questions were raised on our forum about Lenire – the thread has been viewed over half a million times – that we felt we needed to do our best to gather as many answers as possible.

In the episode, Hazel and Ross talk about the basic principles of the treatment, its effectiveness, and risks. We also covered clinical trial results and go in-depth on what the treatment actually looks like. We clarify whom Lenire is suitable for, and Ross makes some projections about future roll-out of the device.

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Listen on:

• Tinnitus Talk Podcast (incl. timestamps and transcript)
  
• SoundCloud
  
• iTunes
  
• Spotify

We welcome any discussion, but please keep the following in mind when commenting:

• Off-topic comments, i.e. not directly responding to the content of the podcast, will be removed. So please do listen before commenting!
• While we welcome constructive criticism on ideas or policies, we do not tolerate direct attacks on individuals.

Tinnitus Talk would like to thank Neuromod for its continued cooperation with us, and for providing the tinnitus community with this chance to engage directly with them.

This episode was produced, as usual, by @Markku and @Hazel. Do you want to join our team as well? Let us know!

Don't forget to:

• Send Ideas and Suggestions for Future Podcast Episodes

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[Tinnitus Talk]

For those who rather read than listen, the transcript of the interview is available below.

We want to thank @Liz Windsor who graciously keeps creating these awesome transcripts of our episodes for all of you to enjoy.

View Transcript for Tinnitus Talk Episode 07: Neuromod's Lenire — Treating Tinnitus the Bimodal Way

 

[ajc]

Great episode guys.

This confirms my own findings with regards to the Bluetooth headphones Lenire uses. The latency is predictable and consistent and they have worked around it.

Now if only they could get the treatment more widely available...!

 

[Agrajag364]

Thank you so much for this incredible interview. Tinnitus Talk is the best patient advocacy forum I've seen.

Credit also to the man from Neuromod for taking part.

Some extremely interesting answers.

I had wondered why there'd been such a delay in publishing the clinical trial data, as they did say last autumn they were about to submit for peer review. His comments on the trial go some way to explaining that. He seems to be saying it's the sheer complexity of the data, and I guess he's kind of implying they've taken time considering what of the data is proprietary.

For me and maybe for others, the biggest factor in deciding whether to try this, apart from waiting for publication of their data, would be the consideration of whether it runs a risk of worsening tinnitus long term. His answer on this was a little bit unclear, unless I maybe just don't understand it. He says there's a regularatory obligation to track all adverse events. He then refers to many patients reporting fluctuation in their tinnitus loudness, particularly at the start of treatment (presumably upward fluctuation i.e. worsening, as well as downward). He then says the trial data shows that tinnitus loudness reduces over the 12 weeks... and they "didn't find any evidence in the two clinical trials that tinnitus loudness increased or stayed increased or even that these fluctuations continued in the longer term, but it is something that patients report quite commonly". I think he means there that patients commonly report early fluctuations including worsenings, but no patient found that such a worsening continued beyond 12 weeks. It would have been better if he'd said that outright, perhaps.

 

[Martin69]

Wow. Excellent interview covering all questions.

Really good. I guess it is time to spend another 25$ to Tinnitus Talk (already done in this minute).

Keep up the good work.


@Markku
@Hazel

 

[threefirefour]

Thank you so much for this incredible interview. Tinnitus Talk is the best patient advocacy forum I've seen.

It really is. I've seen tons of health forums but none of them ever go this much above and beyond.

 

[Barbara777]

You have my respect for this interview, it was very well done. @Hazel was a great interviewer. I hope Lenire becomes available in more countries soon. I might want to try it.

I know from my previous job how much work goes into long interviews so I can really appreciate your team effort. Thanks @Markku, @Liz Windsor and whoever else I forgot to mention. Let me know if I can ever be of help. Although I don't have much time to volunteer unfortunately.

Next month I'll make another donation to your work, it's not going to be much, but hopefully the small gesture helps.

If I was a millionaire I'd be giving you loads.

 

[Markku]

Feedback on this episode from Twitter, makes us very happy to hear.

 

[TuxedoCat]

Wow, this is so well done you guys!

Many thanks to Ross O'Neill for taking the time to thoroughly answer the questions.

I found the interview to be extremely informative and have to agree with others who have said Tinnitus Talk is the best patient group out there.

-TC

 

[XrayTom]

Listening to it now. @Hazel is the Bomb! Great work guys!

Tinnitus is definitely centralized in the brain. Mine was caused by a concussion and it is in the middle of my brain, not in my ears.

I wonder if it would better if it was just in one ear as opposed to the total head. Either way, they definitely need to start with the brain first.

Hoping for a cure one day but this might be a good stopgap in the meantime.

 

[London00]

I bought Lenire in Germany for €2,750 EUR.

Here are my experiences after seven weeks of use.

I derived no benefit for my tinnitus from the use of this device. The advertising campaign of Lenire has been very extensive, raising hopes that unfortunately are not based on scientifically and qualitatively valid studies.

I point out that the "Deutsche Tinnitus Liga' in the article published in its last magazine reports the opinion of the scientific committee that advises against purchasing this device. And they highlighted serious methodological issues on the quality of the scientific study carried out by the University of Regensburg.

I simply have to confirm from my own skin that Lenire does not work.

 

[Luman]

I bought Lenire in Germany for €2,750 EUR.

Here are my experiences after seven weeks of use.

I derived no benefit for my tinnitus from the use of this device. The advertising campaign of Lenire has been very extensive, raising hopes that unfortunately are not based on scientifically and qualitatively valid studies.

I point out that the "Deutsche Tinnitus Liga' in the article published in its last magazine reports the opinion of the scientific committee that advises against purchasing this device. And they highlighted serious methodological issues on the quality of the scientific study carried out by the University of Regensburg.

I simply have to confirm from my own skin that Lenire does not work.

Thank you for helping to confirm that the makers of this device are selling a bill of goods, to desperate people.

 

[Alberte]

I bought Lenire in Germany for €2,750 EUR.

Here are my experiences after seven weeks of use.

I derived no benefit for my tinnitus from the use of this device. The advertising campaign of Lenire has been very extensive, raising hopes that unfortunately are not based on scientifically and qualitatively valid studies.

I point out that the "Deutsche Tinnitus Liga' in the article published in its last magazine reports the opinion of the scientific committee that advises against purchasing this device. And they highlighted serious methodological issues on the quality of the scientific study carried out by the University of Regensburg.

I simply have to confirm from my own skin that Lenire does not work.

Thank you for sharing your experience.

 

[Gary Heaney]

I should have listened to this episode before purchasing Lenire. I'm sick of companies taking advantage of people. My tinnitus is getting worse with age. I really can't imagine having any good quality of life going forward. It's affecting my personality and moods.

 

[Nick47]

I should have listened to this episode before purchasing Lenire. I'm sick of companies taking advantage of people. My tinnitus is getting worse with age. I really can't imagine having any good quality of life going forward. It's affecting my personality and moods.

Make sure you spread the word to warn others.

 

[Gary Heaney]

Make sure you spread the word to warn others.

I stopped using Lenire on Friday. My tinnitus has never been this bad. My tongue has metallic taste and was so painful Friday and Saturday that I could barely eat. I've contacted the supplier and they are reluctant to refund me within 14 day cooling off period. I'm trying to mask right now but I feel like I'm about to lose my mind.

 

[Nick47]

I stopped using Lenire on Friday. My tinnitus has never been this bad. My tongue has metallic taste and was so painful Friday and Saturday that I could barely eat. I've contacted the supplier and they are reluctant to refund me within 14 day cooling off period. I'm trying to mask right now but I feel like I'm about to lose my mind.

Hang in there. Get your experience out there on Twitter or whatever social media you are on so others can make informed decisions.

 

[UKBloke]

I stopped using Lenire on Friday. My tinnitus has never been this bad. My tongue has metallic taste and was so painful Friday and Saturday that I could barely eat. I've contacted the supplier and they are reluctant to refund me within 14 day cooling off period. I'm trying to mask right now but I feel like I'm about to lose my mind.

Like @Nick47 says, just try and hang in there. Transient worsenings (Lenire induced or not) are frickin' awful; I've suffered quite a few of them these past years as well as all sorts of other weird tinnitus/hyperacusis related stuff that really did make me feel like I was losing my mind at times.

My survival technique has been masking when I can (sometimes the hyperacusis wouldn't allow that but honestly at moments like that, facing the screeching tinnitus seemed like a positive in a weird way and that's how I got through it). I've also drank plenty of good quality water, done my best to get out in nature and whatever it takes to get decent sleep - even if that required a ten-mile walk. Believe me, once you do these (or similar) things even over the course of a week or so they can become habit-forming and bit by bit you'll regain a sense of control and chip your way through to a better situation.