Lenire — Bimodal Stimulation Treatment by Neuromod

[UKBloke]

I think the debate about whether or not Lenire being worth the risk/money is an offshoot of the more important question: what does a "success" actually constitute?

I've been following this thread since June when it was first announced they would launch and there was a lot of promise and hype around what I believe was a ~65-80% improvement figure with a small portion of those being hyper responders who had near complete alleviation of their tinnitus, and then the remaining 20% of non responders.

At the time it seemed like what they deemed to be a "improvement" was tinnitus reduction of about 8 decibels which would in effect halve the volume of your tinnitus.

It seemed like we all thought that when the device released and the user reports would roll in we would see something along those same lines - 20% no response, 50-70% with tinnitus at half volume or so, and 5-10% with complete or near alleviation.

Honestly it seems that the bar for what is being deemed a "success" is a lot lower than what I initially thought we were working with. Quite a few of the improvement stories mention that the tinnitus is slightly improved or somewhat less intrusive but nothing close to the 50% reduction we were all gunning for...

I don't think most people went into Lenire thinking it would silence their tinnitus but if you look back at the threads in early summer most people we're hoping for a 30-50% reduction as long as they weren't in the 20% non-responder group, at least based off Lenire's own data.

For me that is where the disappointment stems from...

I wholeheartedly agree with everything you've said here.

 

[HootOwl]

Hey everyone I just wanted chime in here on this thread real quick.

Thank God, Lenire is no longer creating a new high pitched tone for me anymore. If you read my two week review, this was very distressing for me as it was unmaskable as it reacted severely to other sounds. I also already have many tones, so the device created a new tone almost caused me to stop the treatment.

I'm a big believer in jinxing (lol) because every time I feel like I've said something positive about my tinnitus the exact opposite happens and it worsens. Regardless, I wanted to post this as I thought it was crucial for potential users to know that the tone wasn't permanent for me. It sometimes emerges after treatment, but quickly dies down.

I also pushed my six week review back by two weeks due to my troubles with the device early on.

Really glad to hear the reactivity went away!

 

[PeterPan]

Lenire doesn't work as well on severe tinnitus. It seems to work the best with regular sufferers with less tinnitus (and therefore less tinnitus activity). Tinnitus Talk users tend to be on the severe side because people with bad tinnitus are more likely to be bugged by it and linger on tinnitus forums.

That's something we can test for end of April!

 

[PeterPan]

At the time it seemed like what they deemed to be a "improvement" was tinnitus reduction of about 8 decibels which would in effect halve the volume of your tinnitus.

I think it was a reduction in THI by 8 points, not 8 dB.

 

[PeterPan]

This is the problem with people doing their own summaries - it's easy to just mis-state or mispresent things, unintentionally I'm sure

In the Lenire User Experience Group surveys the experience is summarized as a number, so this issue should be avoided...

 

[ChrisBoyMonkey]

I stated quite clearly in the original post that I was interested in the anecdotal statements of those users who'd suffered with tinnitus at least 2 years prior to treatment. @BigNick reports tinnitus onset from November 2018 and therefore isn't in the 2 year category.

You're evidently in this category and sure, if you feel that I've pegged you wrong in my summary, fair play. You've updated the situation so evidently things are different to how they were being reported at the time I made the original post.

@mrbrightside614, @Redknight isn't in the 2 year category.

You're missing @dfl. Last he updated it sounded like success.

 

[UKBloke]

You're missing @dfl. Last he updated it sounded like success.

I did quite an extensive search to see if @dfl had reported elsewhere on the forum but couldn't find anything. Last update he did in the User Experiences thread sounded very promising but he was only half way through treatment at that point.

As I say, there were two specific criteria I wanted to see anecdotes for; tinnitus onset at least two years prior to treatment, and treatment completed.

 

[UKBloke]

Two fundamental questions. Is Lenire more effective than placebo? What is the likelihood of permanent worsening?

Regarding placebo, there was plenty of discussion early on about that and not too much came of it if I recall. One thing of great interest though were comments about the test data suggesting Lenire would provide similar results to CBT but in a much shorter treatment period: 12 weeks as opposed to 2 years.

The likelihood of permanent worsening is my biggest concern. Quite honestly, if I'd paid for the device and it did nothing I'd be fine with that. In for a penny in for a pound as they say. But the chance of tinnitus worsening is a completely different matter, and it seems to me to be a not insignificant one given the anecdotal reports coming in. I prefer to stay on the sidelines and cope with what I have.

 

[ChrisBoyMonkey]

I did quite an extensive search to see if @dfl had reported elsewhere on the forum but couldn't find anything. Last update he did in the User Experiences thread sounded very promising but he was only half way through treatment at that point.

As I say, there were two specific criteria I wanted to see anecdotes for; tinnitus onset at least two years prior to treatment, and treatment completed.

1. It was worth mentioning even though he never came back to report further.

2. He has had tinnitus for much longer than that.

3. Your "two years" is completely anecdotal speculation. There is no real data to support this as the standard for it to be chronic.

Some people just want to make Nerumod Lenire sound worse than it actually is, I just want to point it out that you are leaning to be to one of them. For what it's worth, if you want to remain objective, it would be best for you to mention all your findings.

 

[UKBloke]

There is no real data to support this as the standard for it to be chronic.

You're quite right, there's no real data anywhere to support a standard. Even the medics don't seem to be able to agree on exactly what chronic is - 6 weeks, 3 months, 6 months, 9 months? Your guess is as good as mine. The Internet is allowing us suffers to begin feeding into the dialogue, which is great but surely when we do, we can only go off our own "completely anecdotal speculation" as you put it?

Some people just want to make Nerumod Lenire sound worse than it actually is

This comment suggest bias. I assure you, I have no bias whatsoever when it comes to making Neuromod Lenire sound anything other than what it actually is and does.

For what it's worth, if you want to remain objective, it would be best for you to mention all your findings.

I knew the original post would create some controversy but I felt I wanted to start somewhere, and the criteria seemed fair to me for all the reasons I've given. I also want to repeat again that I have no problem whatsoever if Lenire doesn't work; I'd happily pay for the device, flights etc, and put the whole thing down to experience. That said, I have a major problem with Lenire if it makes things worse, or "disimprove" as they put it.

People like @threefirefour have said, the explanation for the seemingly high number of worsening in the small sample size of completed treatments may be that Tinnitus Talk members tend to have symptoms more on the upper side of severity, and if this is the case perhaps Lenire isn't that effective a treatment for this type of patient. I have no idea at this point, but I would have thought this was something our group would want to get to the bottom of?

 

[Ruse]

You're missing @dfl. Last he updated it sounded like success.

From just looking at the first 3/4 names on my list of improvers, he's also missing out ClareB and Clearance.

Many improvers (from TinnitusTalk / anecdotes / Facebook sources) we don't even have info on their tinnitus duration.

I would take this snapshot with a pinch of salt.

 

[UKBloke]

From just looking at the first 3/4 names on my list of improvers, he's also missing out ClareB and Clearance.

Many improvers (from TinnitusTalk / anecdotes / Facebook sources) we don't even have info on their tinnitus duration.

I would take this snapshot with a pinch of salt.

@Ruse taking the observations of a 30 year tinnitus sufferer with a pinch of salt is entirely your prerogative.

Regarding Clare B my understanding was that she first noticed tinnitus symptoms in 2015 but by 2016 was on the Lenire trial that lead to her being cured essentially. Likewise Clearance who had noted symptoms March 2019 and was in treatment by July 2019. I've said it before but I suppose I'll need to say it again - I have only looked at the results from people who had suffered tinnitus symptoms for at least 2 years prior to treatment (as reported on this website within their profile).

Edit: I noted from Clearance's posting that he/she did actually report having tinnitus 3 times in life - first time in 2009, 3rd and final time (hopefully) around February 2016. Clearance did actually try MuteButton but the tinnitus came back; went into Lenire treatment but unfortunately has not reported anything in the User Experience thread as far as I can see. My snapshot is of the User Experience thread only.

 

[LongWait]

I know what I know and I don't give a #@%* about what you think I know or not so you better punch out from the idea of falling on every one of my comments looking for some of that bad juju you seem to feed with. And just to cross my last words ever with you:

This is a forum. People come here to share their ideas, conjectures, opinions, experiences, etc... If I want to protect Lenire I am very free to do it, mate. Deal with it and move on. You seem to be fully incapable of discussing something without putting a huge amount of polemic in it. You take stuff too personal. Big ego there. Bye.

Why would you want to protect Lenire?.

1. It was worth mentioning even though he never came back to report further.

2. He has had tinnitus for much longer than that.

3. Your "two years" is completely anecdotal speculation. There is no real data to support this as the standard for it to be chronic.

Some people just want to make Nerumod Lenire sound worse than it actually is, I just want to point it out that you are leaning to be to one of them. For what it's worth, if you want to remain objective, it would be best for you to mention all your findings.

I have an appointment, I don't think anybody is making Lenire seem worse than it is, there isn't really anything to claim off feedback, that it is effective as such, however if it benefits a few then that is more than anything else has offered. The risk of worsening for chronic/severe sufferers is hugely off-putting, if there is more chance of that than an improvement.

 

[Sytex75]

I'm not sure if this question has been answered or not but here goes...

What is the difference between the MuteButton and Lenire? When I looked it up it showed Dr. O'Neill with it on his cranium with the tongue probe in his hand with a big smile on his face back in 2015... I gather Mr. Hubert Lim had a bit more involvement with this device correct? Timing? More juice to the probe? Different high pitch sounds?

I heard about the MuteButton on Tinnitus Talk but never looked it up. I'm heading over for my initial consult on Thursday next week and thought I would do a query on here before that...

 

[GlennS]

Why would you want to protect Lenire?

Bottom line is that it's the words of those who had the courage and fortitude to try this device and post their results that matter the most, not those who merely cheerlead from the sidelines.

 

[JayBowson]

What is the difference between the MuteButton and Lenire? When I looked it up it showed Dr. O'Neill with it on his cranium with the tongue probe in his hand with a big smile on his face back in 2015... I gather Mr. Hubert Lim had a bit more involvement with this device correct? Timing? More juice to the probe? Different high pitch sounds?

This is a question I asked the fitter Ciara. And while she was sure they'd updated the internals of the device and the timings she didn't really know in detail beyond that. I suspect that's a question only the upper echelons of Neuromod will be able to answer properly.

Another question I did ask of Ciara was about the worsenings. She was quite adamant that all worsenings from the trial returned to baseline in the follow ups. And was confident that any worsenings from the current users would follow suit. Although they've a lot more people now so it's still a risk you'll have to take that new outliers and negative effects will emerge from the larger population.

As per my own experience. I've been using Lenire for 5-6 days now. I've found my tinnitus swinging much more quickly from bad to good and back again. Before treatment I could wake up on a given day and know it'll be like that pretty much all day, good or bad. Now it flips back and forth from hour to hour nearly. I've no idea if this means much of anything though. It's in no way better or worse like this really.

My tinnitus is elevated somewhat after treatment but returns to normal within about 20 minutes or so.

Not much else to say about it as it's still just the beginning of treatment so I'll update in a few weeks in the User Experiences thread, maybe if it's a long enough reply to be worth it.

 

[ChrisBoyMonkey]

Why would you want to protect Lenire?.

I have an appointment, I don't think anybody is making Lenire seem worse than it is, there isn't really anything to claim off feedback, that it is effective as such, however if it benefits a few then that is more than anything else has offered. The risk of worsening for chronic/severe sufferers is hugely off-putting, if there is more chance of that than an improvement.

No I believe there are a few out there. I've been using Lenire for about two weeks now, but I've been taking it easy by doing only one 30 minute session a day. So far I'm liking the results so I'll probably start using it for the hour daily soon.

 

[Lilah]

Another question I did ask of Ciara was about the worsenings. She was quite adamant that all worsenings from the trial returned to baseline in the follow ups. And was confident that any worsenings from the current users would follow suit. Although they've a lot more people now so it's still a risk you'll have to take that new outliers and negative effects will emerge from the larger population.

How are they measuring that all worsenings returned to baseline? I would trust the participant's statements on this, rather than another test like THI or MML, etc.

 

[pinklights98]

Lenire reduces my tinnitus volume when I have a migraine.

My tinnitus naturally decreases in intensity when I get migraines, but with Lenire it decreases a little more than it usually does. Of course it goes right back up as soon the migraine leaves. I wish I knew what was happening.

 

[UKBloke]

Hi everyone,

Re: the snapshot of current user experiences:

I realised this morning after @Mentos made quite an interesting update in the User Experiences thread that I'd made a mistake, which I'm happy to hold my hand up to. Clearly he hasn't finished treatment yet, and as I was only looking to understand the end reports of those >2-year sufferers, I've removed his entry from the list.

@ruud1boy also stated he was 90% indifferent and 10% good, and on that basis I've placed his entry in the indifferent column. I won't make any further additions to this list or post another.

I want to say thank you again to all of those users who are taking the time to share their experiences with this device. I know that me taking an early look at the reports has irritated some of you, but I just want to say that I've waited nearly 30 years for a treatment like this - something where the science goes beyond shoving a masker into our ears and telling us to deal with it. I was on the verge of signing up and needed some data now, not April - although ultimately April is not that far away and I'm sure PeterPan's figures will give us a much clearer view. Cheers all.

Negative

@Paul Betteridge: my tinnitus is through the roof - I am now so desperate that I am on antidepressants

@thescientist: I have not noticed any improvement in my tinnitus so maybe it is not going to work for me at all.

@Ade: It has got so bad that I have had to stop using it. I need things to settle down as it is breaking me at the moment.

@TinMan2019: I'm throwing in the towel. I had high hopes for this bimodal treatment. But I guess it's just not working for me.

Allan1967: my experience with Lenire was that it instantly increased my tinnitus and as the weeks progressed my reactivity went through the roof as well.

Indifferent

@ruud1boy: My tinnitus is largely unchanged I'm afraid

@jacob21: I stopped using Lenire 2-3 weeks ago, probably because my tinnitus was generally better (good and bad days), with bad days more manageable but still bothersome. Hard to say if it was due to Lenire?

@Liz Windsor: I know this must sound terribly vague but, at the moment, that is just how it feels to me.

Good

@hans799: Overall, I feel positive about Lenire. The device definitely does affect tinnitus. It is definitely capable of lowering its volume, as demonstrated during my first 6 weeks.

@Krolo: Lenire has done quite a wonder on me and is definitely worth it.

 

[Tomas80]

Hi everyone,

Re: the snapshot of current user experiences:

I realised this morning after @Mentos made quite an interesting update in the User Experiences thread that I'd made a mistake, which I'm happy to hold my hand up to. Clearly he hasn't finished treatment yet, and as I was only looking to understand the end reports of those >2-year sufferers, I've removed his entry from the list.

@ruud1boy also stated he was 90% indifferent and 10% good, and on that basis I've placed his entry in the indifferent column. I won't make any further additions to this list or post another.

I want to say thank you again to all of those users who are taking the time to share their experiences with this device. I know that me taking an early look at the reports has irritated some of you, but I just want to say that I've waited nearly 30 years for a treatment like this - something where the science goes beyond shoving a masker into our ears and telling us to deal with it. I was on the verge of signing up and needed some data now, not April - although ultimately April is not that far away and I'm sure PeterPan's figures will give us a much clearer view. Cheers all.

Negative

@Paul Betteridge: my tinnitus is through the roof - I am now so desperate that I am on antidepressants

@thescientist: I have not noticed any improvement in my tinnitus so maybe it is not going to work for me at all.

@Ade: It has got so bad that I have had to stop using it. I need things to settle down as it is breaking me at the moment.

@TinMan2019: I'm throwing in the towel. I had high hopes for this bimodal treatment. But I guess it's just not working for me.

Allan1967: my experience with Lenire was that it instantly increased my tinnitus and as the weeks progressed my reactivity went through the roof as well.

Indifferent

@ruud1boy: My tinnitus is largely unchanged I'm afraid

@jacob21: I stopped using Lenire 2-3 weeks ago, probably because my tinnitus was generally better (good and bad days), with bad days more manageable but still bothersome. Hard to say if it was due to Lenire?

@Liz Windsor: I know this must sound terribly vague but, at the moment, that is just how it feels to me.

Good

@hans799: Overall, I feel positive about Lenire. The device definitely does affect tinnitus. It is definitely capable of lowering its volume, as demonstrated during my first 6 weeks.

@Krolo: Lenire has done quite a wonder on me and is definitely worth it.

According to this chart, Lenire is shown to be ineffective. I'm wrong?

 

[UKBloke]

According to this chart, Lenire is shown to be ineffective. I'm wrong?

I think you need to be the judge of that. But remember, this list is very specific and a small sample size.

 

[Lynny]

According to this chart, Lenire is shown to be ineffective. I'm wrong?

Ineffective is a strong word but dubious or possible placebo might unfortunately be fitting

Still, I agree with @UKBloke, it's only a small sample size.

 

[Autumnly]

Has anyone heard anything from Hannover?

 

[Simon Czt]

Has anyone heard anything from Hannover?

No

 

[friend74]

Has anyone heard anything from Hannover?

No.

 

[UHPTS]

Has anyone heard anything from Hannover?

No. I even tried calling them twice. I just got answering machine.

 

[raymilf]

Very unprofessional...

 

[Martin69]

Has anyone heard anything from Hannover?

Same here. Nothing.

 

[UHPTS]

And I will add that I wrote to at least 10 private ENT clinics in Czech republic and Slovakia about Lenire. I asked them if they wouldn't consider providing this treatment to their patients. I only got one answer which was "No". They have lot of patients, no time to implement new treatment. Then I went to a tinnitus specialist who has been doing tinnitus for 30 years. I asked him about bimodal stimulation, what he thinks about it. He had no clue what I was talking about.

So there is one and maybe the only product that can provide relief to some patients, it's reasonably priced, but there is no way to get to it. What a pitty and a fail at the same time. I don't blame Lenire for it though. It's more about the price they set on it. Most ENT clinics don't work in this price range. I just got an offer for LumoMed laser earphones. No doctors visit, no nothing, not even some specs, but they gave me a "special offer" 2650 euro ..