Lenire — Bimodal Stimulation Treatment by Neuromod

[brokensoul]

Final tally: 3 / 19 = 15.7%

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I seem to somehow have overlooked @hans799, although he clearly states he is seeing improvements.

However,

User Experiences Thread: 11/07/2019

Update week 4.

Today my tinnitus was completely gone for 12-13 hours. I've never heard this silence for such a long time. Really. Nothing. No bell in the head. No noise in the right ear. The last week the same occurred for two hours. I've got no idea if this is the Lenire effect or something else but this is really good for me. And this is only the first month of using Lenire.

This Thread 01/12/2020:

My tinnitus has had a lot of fluctuations.

Sometimes it is quieter and sometimes it is louder.

Tomorrow is my 3-month Lenire anniversary and at the moment I consider the treatment a flop.

Lucky97 is not an improver.

 

[brokensoul]

A wishy washy "the tinnitus is still there but I'm just sorta, um, dealing with it better" report ain't an improver. It just doesn't cut the mustard. It's the same sort of thing you'd expect to see out of any sham treatment's testimonials (including, presumably, MuteButton, Lenire's disgraced predecessor).

Agreed.

Everyone,
I have nothing against Lenire and I really want it to work. I'm suffering bad. My condition is nothing short of the big S. I just looked at the threads and found very few improvers and therefore asked for input.

I highly respect the fact that Neuromod has actually come out with a treatment to reduce tinnitus. Hopefully it does indeed work for some people, even if it's a minority, it would still be great news. Some people may want to see a high percentage of improvers to consider this a success, but from my point of view a low percentage of actual improvers IS a success!

We all know however, as Dr. Susan Shore said, that tinnitus treatments are highly susceptible to the placebo effect. Therefore we need to be critical. Some people even claim their tinnitus volume has gone down after TRT or CBT or even by doing some yoga sessions, which to my knowledge isn't possible and is likely just perception.

There is also clearly a difficulty in assessing actual improvement if the person has a fluctuating tinnitus to begin with. I hope @PeterPan makes a good assessment of the tinnitus characteristics of Lenire users.

On the other hand don't let this discourage you. Perhaps some of us are too critical and the actual rate of improvers is effectively higher.

Imagine you're one of the lucky ones that does improve. I hope so for all of you that are still undergoing the treatment or plan to do so.

 

[friend74]

So is it clear now that one disimprovement was caused by Lenire, and not by a fire alarm?

 

[AfroSnowman]

Tell me the name of that pub btw

Thanks. The negativity on this thread grows strong at the worse possible moment for me. All positive vibes are appreciated. The Deadman's Inn. Pretty dead (if you don't mind the word play) at 3pm on a Thursday.

 

[ruud1boy]

@ruud1boy thanks for your recent post in the User Experiences thread.

I wanted to ask you, have you been retested for MML, and has there been a change? Also, do you think the characteristic of the tinnitus sound has changed while using Lenire?

They did an MML test on each of the 4 occasions I was over in Dublin and it came out around the same every time - c.50 dB white noise, which they reckoned equates to about 70-75 dB real world noise. My tinnitus tone / sound hasn't changed at all while I've been using Lenire - in fact my tinnitus is pretty much unchanged in any way, positive or negative, by Lenire.

 

[Rigsbin]

Does anyone know if it's normal for tinnitus to change pitch when using Lenire?

I've been using it for a week now and my tinnitus has become extremely high pitched and unmaskable. I can't be 100% sure it's due to Lenire but I'm pretty sure because during the session I can hear my tinnitus tripping out lol.

I'm trying to stay calm because they said fluctuations are normal, but I assumed they meant fluctuations in volume and not tone.

At least I could mask my tinnitus before using sound therapies on YouTube. Now I can't

I've also been using Lenire just over a week and I've noticed that my tinnitus has also become a higher pitch along with it fluctuating in intensity.

I'm taking it as the treatment doing something and hoping it continues to increase in pitch until I can't hear it!

I don't really try to mask so can't comment on that, but try not to worry it's early days still...

 

[threefirefour]

OK, fair enough. But how many of the 15 who said they had an improvement were sure about it?

Do you know how many of the 24% have somatic tinnitus?

Quite sure if they weren't sure I didn't add it until they were. If it was at the end of the trial I would just add it under N.

If their trial was still going and they didn't have improvement, I would add it under N and it would stay there until they improved.

All but 2 I think had somatic tinnitus.

OK, challenge accepted, or as the Emperor would say:

View attachment 34607

First off, are you aware that you have duplicate people in your list? I just finished reading through the entire User Experiences thread and put things into Excel. The criteria I use:

-Claire B not included. She was a trial participant.
-Only those at or near the end of treatment are in this list. Results fluctuate too much to include anyone else.
-Wishy-washy results that sound too much like Neuromod's video testimonials get filed under "Placebo". THAT is where the what-color-is-this-dress subjectivity is going to be.

BTW, I hesitate to mention this but we do have one disimprover followed by suicide. I'm not going to indict Neuromod but Allan's experience is still a matter of record.

So in my accounting, 19 total participants.

Disimprover: 3
No Change: 5
Placebo (wishy washy/mild/inconclusive): 8
Improver (aka statistically significant): 3

Final tally: 3 / 19 = 15.7%

Verdict: Results do NOT match Neuromod's claims.

Even if you include everyone in the placebo group it rises to 57.8% which is close to but still shy of their figures, but it helps explain their criteria which seems to chalk up every weak/wishy-washy outcome as a win.

Sample size is still much too small. Averages always fluctuate a lot with small sample sizes. I'd like to see well over 100 complete their treatment before drawing any conclusions, which I doubt we'll get before April.

View attachment 34608

The problems here are obvious, you're putting regular improvement under placebo improvement despite the fact we established that 6 decibel reduction wasn't as much as we thought, and you're only using the posts in User Experiences thread instead of every review on Tinnitus Talk, giving you a much smaller and less reliable sample size. Did you just throw this together?

 

[threefirefour]

I seem to somehow have overlooked @hans799, although he clearly states he is seeing improvements.

However,

User Experiences Thread: 11/07/2019

This Thread 01/12/2020:

Lucky97 is not an improver.

He's a fluctuator. Well have to see what happens in a few weeks. If it's still back up then we can say he wasn't but ignoring weeks of progress doesn't make any sense.

The first law of statistics: don't look at the trees, look at the forest.

 

[pinklights98]

I've also been using Lenire just over a week and I've noticed that my tinnitus has also become a higher pitch along with it fluctuating in intensity.

I'm taking it as the treatment doing something and hoping it continues to increase in pitch until I can't hear it!

I don't really try to mask so can't comment on that, but try not to worry it's early days still...

Thanks!! That actually relieves me a little bit knowing there is someone else experiencing something similar. Fingers crossed and praying both of us get better.

 

[zoid]

@MRItechssuck I signed up around September. I've got an invitation for April.

Really doubting if I must go or wait. I need some more confidence that the treatment is really working for a large number of people, but at the moment it doesn't look good so I'm really curious about the outcome of the Tinnitus Talk study.

Anyone knows when Tinnitus Talk are going to publish some results?

 

[El BUZZ]

View attachment 34622

When do you think Susan Shore's gadget could hit the market?

Thing is this is again something we won't be able to get in the Media Markt around the corner and there will be another huge waiting list.

So is it clear now that one disimprovement was caused by Lenire, and not by a fire alarm?

I find it of tremendous bad taste to keep talking about Allan in those terms these days. Show some respect, please.

Thanks. The negativity on this thread grows strong at the worse possible moment for me. All positive vibes are appreciated. The Deadman's Inn. Pretty dead (if you don't mind the word play) at 3pm on a Thursday.

Fooking hell, what a name. You defo must change to O'Donogue's.

And don't worry, mate. Depending on the moment you check this thread you would have felt fine getting the Lenire or not.

Sometimes I think there's some people here not wanting Lenire to work. As twisted as it may sound.

 

[DCM]

Hi,

What is the $ cost of Lenire?

I have had tinnitus & hyperacusis (right ear) for 3 years. It was getting better but recently had a spike. I seem to be on the mend..

I live in NYC and this device has not been approved by the FDA yet.

How much are people paying for the treatment?

I am thinking of TRT in NYC and the cost is about $2500.00.

But Lenire seems to be a different method to TRT...

Best Denis
Bronx NYC

 

[threefirefour]

Hi,

What is the $ cost of Lenire?

I have had tinnitus & hyperacusis (right ear) for 3 years. It was getting better but recently had a spike. I seem to be on the mend..

I live in NYC and this device has not been approved by the FDA yet.

How much are people paying for the treatment?

I am thinking of TRT in NYC and the cost is about $2500.00.

But Lenire seems to be a different method to TRT...

Best Denis
Bronx NYC

Lenire cost about $2,300 but you would have to fly out to Europe to get it, bringing the price higher. The difference is Lenire actually reduces tinnitus in most people. TRT you can get anywhere for way cheaper.

Hope this helps.

 

[El BUZZ]

Hi,

What is the $ cost of Lenire?

I have had tinnitus & hyperacusis (right ear) for 3 years. It was getting better but recently had a spike. I seem to be on the mend..

I live in NYC and this device has not been approved by the FDA yet.

How much are people paying for the treatment?

I am thinking of TRT in NYC and the cost is about $2500.00.

But Lenire seems to be a different method to TRT...

Best Denis
Bronx NYC

F#%k TRT!

Lenire costs 1900€ if you spread the grease over the counter, otherwise it is 2000€ if you pay with card or in installments.

Then you have to pay for the first appointment in which you undergo several tests to have the device tailored to your specs. That appointment is 250€.

 

[threefirefour]

So is it clear now that one disimprovement was caused by Lenire, and not by a fire alarm?

No actually, because he was the only one. There were other worsening but they were all temporary, and there was an actual noted cause to Allan's spike; the fire alarm.

So Occam's razor; what caused it? Either Lenire just so happened to make his permanently worse despite the fact this phenomenon is known absolutely nowhere except in Allan's case? Or he heard something really loud that caused an increase?

But El Buzz is right, I don't feel comfortable using the late Allan as an experiment.

 

[ruud1boy]

The Deadman's Inn. Pretty dead (if you don't mind the word play) at 3pm on a Thursday.

Gotta love the Deadman's Inn! I've whiled away a few hours in there each time I've visited Neuromod.

 

[brokensoul]

@MRItechssuck
Anyone knows when Tinnitus Talk are going to publish some results?

@PeterPan will publish the results in April.

 

[brokensoul]

Sometimes I think there's some people here not wanting Lenire to work. As twisted as it may sound.

I understand the reaction, but no, I think we are all suffering and want Lenire to work.

The criticism stems from all the previous failures the tinnitus community had to endure.

 

[brokensoul]

The negativity on this thread grows strong at the worse possible moment for me.

Criticism does not equate to negativity.

All positive vibes are appreciated.

You will be one of the lucky improvers.

 

[zoid]

@PeterPan will publish the results in April.

Thanks @brokensoul!

 

[GlennS]

No-one else is obliged to use your standards.

That works both ways.

How about we just take a users word for it eh? If a Lenire User says they have improved we count them as an improver?

Most of the placebo group are those who are striking an ambivalent tone. Some of those I could have easily rendered a negative judgment for them and put them under "no change". I gave them the benefit of the doubt and put them under Placebo which could also be considered Indeterminate. I did not throw anyone into placebo who were emphatic in declaring their improvement. You have to understand how placebo works, psychologically. People can sort of will themselves into thinking they're feeling better when they're not. If there really IS a change but it's marginal enough then it's not going to be possible to really measure the change. That is exactly why Neuromod used language like "statistically significant" improvements. Unless the change gets drastic enough that you can measure, let's say, a clear difference in MML (as people are struggling to do as they talk about their everyday routines like the shower, a restaurant, etc...) then it falls into the wishy washy territory of "I, um, sort of felt better" which so many sham treatments have leaned on to suck in the gullible. I would expect the bar to be higher here where so many posters have dropped thousands of dollars on other sham treatments, and indeed, early on in the Neuromod discussion there was a LOT of skepticism. It was only after the TENT-A2 results were released and the first video interview with Neuromod did people start to really take them seriously. But for the user reports to be really not that much better than Mutebutton or ACRN, etc... then I would expect the credibility of Neuromod to take a serious hit.

I really don't know how to convey this skepticism any more succinctly than that. I know you're not going to get on board with it, but I feel this is reasonable. Nevertheless you keep trying to belittle, mock, or caricature my position. This is what I think the data is conveying at present, period.

I see you on here minimising and hand waving away improvers as "placebo" and "wishy washy" but why is it that you fail to turn the same boundless skepticism towards the disimprovers?

Like I said before. Depending on how stubborn people want to be we could start scrutinizing individual cases. I don't think that's a good use of our time right now. None of us really should be doing this sort of thing considering that Tinnitus Talk themselves will crunch the numbers. I only posted my version of the chart as a cross-check against threefirefour's chart. But I wish he hadn't posted it. People just seem to want to argue for sport. I'd be glad to wait until April for the arguments to resume.

Your bias and double standards are front and center Glenn for all and sundry to see.

The feeling is mutual.

Lucky97 is not an improver.

Well, there ya go.

10.5% with "statistically significant" improvement so far and a sea of wishy-washy cases we can endlessly argue over.

 

[JayBowson]

That works both ways.

So you disagree with taking Lenire User Experience posters at face value? Good to know.

I would expect the bar to be higher here where so many posters have dropped thousands of dollars on other sham treatments, and indeed, early on in the Neuromod discussion there was a LOT of skepticism.

Your entire problem boils down to this. And to be clear , it is your problem. You're expecting too much. How exactly would you like 15 THI points of improvement to be expressed on a person with a baseline of 80/90?
It's not going to be "I woke up today and my tinnitus is 50% of its normal volume". It going to be more along the line of the experiences we're reading atm. I've expressed this before but as per your usual MO you just ignore most of it. When you don't actually have a counterpoint to make I suspect. Feel free to prove me wrong.

Nevertheless you keep trying to belittle, mock, or caricature my position. This is what I think the data is conveying at present, period.

You spend every other post here uploading hilarious images in order to belittle mock or caricature other posters. You've some brass neck accusing me of the same Glenn. You really do.

The feeling is mutual.

Wanna elaborate on what my double standard is? Or are you just throwing words on a page in the hope that something will stick?

10.5% with "statistically significant" improvement so far and a sea of wishy-washy cases we can endlessly argue over.

Ah yes the @GlennS statistically significant non placebo certification. Have you considered putting yourself forward as a TENT-A2 scientific peer reviewer? I'm certain the scientific community will be eager to behold your unique insights and standards.

 

[GlennS]

it is your problem.

Oh, it's just me who is the resident pessimist and killjoy am I? Have you been reading anyone else's posts besides mine in this thread? They're not exactly all gushing with praise over Lenire, let me tell you. Since we're in a statistics mode, if you're so dead-set on proving that I'm the lone outlier why don't you start a thread poll so we can actually get an accurate barometer?

For the record, I already conceded to subjectivity and would gladly leave it at that. It's you who insists on dragging me into another p*ssing contest.

 

[JayBowson]

Oh, it's just me who is the resident pessimist and killjoy am I? Have you been reading anyone else's posts besides mine in this thread?

I meant your problem as opposed to Neuromod's... .

For the record, I already conceded to subjectivity and would gladly leave it at that. It's you who insists on dragging me into another p*ssing contest.

Almost every post you make demonstrates an unwillingness to actually take the words being used in the experience thread at face value. It may be their own subjective experience but the words in black and white on a page are not a matter of subjectivity , they say what they say, and if they say 'improvement' that should just the end of it. Same for 'disimprovement'. But then I don't see you up in arms about that?

The stats will come in April and at that point you may end up being right. Who knows. But you're way ahead of yourself at this stage.

I'm not your mum Glenn. I'm not dragging you into anything. You can feel free to not respond or ignore me and let others draw their own conclusions. But from my point of view you're the most vociferous anti-Lenire poster in the thread. And when I see fault in your logic I'm gonna point it out.
Do as you wish.

 

[ChrisBoyMonkey]

I meant your problem as opposed to Neuromod's... .

Almost every post you make demonstrates an unwillingness to actually take the words being used in the experience thread at face value. It may be their own subjective experience but the words in black and white on a page are not a matter of subjectivity , they say what they say, and if they say 'improvement' that should just the end of it. Same for 'disimprovement'. But then I don't see you up in arms about that?

The stats will come in April and at that point you may end up being right. Who knows. But you're way ahead of yourself at this stage.

I'm not your mum Glenn. I'm not dragging you into anything. You can feel free to not respond or ignore me and let others draw their own conclusions. But from my point of view you're the most vociferous anti-Lenire poster in the thread. And when I see fault in your logic I'm gonna point it out.
Do as you wish.

GlennS is just trying to make himself feel better about backing out of his own Neuromod appointment. In case it's new information to you. That's why I just ignore him.

 

[JayBowson]

GlennS is just trying to make himself feel better about backing out of his own Neuromod appointment. In case it's new information to you. That's why I just ignore him.

I do prefer to respond as I know from experience there's actually a large silent cohort of unregistered viewing these threads. If rampant unwarranted scaremongering and negativity is allowed to dominate many potential sufferers could be put off a treatment that may provide relief.

The balance is important.

I would urge restraint in assuming his motive though. If only because it's tactic he loves using himself. I'd have to use both hands to count the amount of times I've been accused of allowing my suffering and need for hope bias me unreasonably in favour of Lenire. But more fundamentally I think it's wrong to assume what going on in someone's head.

Lenire is worth a shot for me because I only suffer mildly, because I happen to live 5 minutes drive from the Hermitage Clinic and 2 thousand smackers isn't going to put me out of house, home and will to live if it fails. For someone who suffers greatly and must pay above and beyond in time and cash to travel to Ireland it's not such an easy decision.

So if Lenire is your last and only hope or the cost to travel will ruin you financially I'd probably advise against Lenire atm.

 

[ChrisBoyMonkey]

I do prefer to respond as I know from experience there's actually a large silent cohort of unregistered viewing these threads. If rampant unwarranted scaremongering and negativity is allowed to dominate many potential sufferers could be put off a treatment that may provide relief.

The balance is important.

I would urge restraint in assuming his motive though. If only because it's tactic he loves using himself. I'd have to use both hands to count the amount of times I've been accused of allowing my suffering and need for hope bias me unreasonably in favour of Lenire. But more fundamentally I think it's wrong to assume what going on in someone's head.

Lenire is worth a shot for me because I only suffer mildly, because I happen to live 5 minutes drive from the Hermitage Clinic and 2 thousand smackers isn't going to put me out of house, home and will to live if it fails. For someone who suffers greatly and must pay above and beyond in time and cash to travel to Ireland it's not such an easy decision.

So if Lenire is your last and only hope or the cost to travel will ruin you financially I'd probably advise against Lenire atm.

Just putting his bias out there.

 

[JohnK]

But John, you said somewhere you can hear your tinnitus everywhere all the time (I imagine there will be a few exceptions to this). How can you manage to not feel bothered by it? I can hear mine everywhere all the time (shower included) and it is difficult not to feel screwed. In fact my expectation from Lenire is to stop hearing my tinnitus in some places. That would be enough for me to breathe.

Because I've begun the process of habituation. It's always there when I think about it but I now go for hours at a time without noticing it--including in environments where I used to notice it constantly.

Habituation is my cure. Lenire is just icing on the cake.

 

[El BUZZ]

Because I've begun the process of habituation. It's always there when I think about it but I now go for hours at a time without noticing it--including in environments where I used to notice it constantly.

Habituation is my cure. Lenire is just icing on the cake.

So happy to read that. We started around the same time. Attended the AM-101 trial. It's a long road to habituation but it seems to happen eventually. I've reached that stage but a current spike has me back at the struggle phase. I hope Lenire reduces it enough to forget about it during long periods.

 

[threefirefour]

You know what? I just noticed something.

A lot of people are claiming to have met someone in the lobby who had good results.

To the people who tried Lenire and met someone in the lobby who had good results, was this person an elderly lady?