Lenire — Bimodal Stimulation Treatment by Neuromod

[Jab4]

So if I'm reading this right?? So many pages to go through which I haven't got the concentration to read so apologies if this has already been answered.

Even if this does work, it could be temporary? If that does happen, do you just use the tongue tingler and device again or will it have less effect each time you use it? Is there a danger of overuse and then possibly causing more damage?

I think that's an unknown.

I think they're focussing on parameters with longer lasting effects.

If it gets released in june will know much more in 3 months.

 

[GlennS]

Even if this does work, it could be temporary?

I've heard no reports of people who used Neuromod's hardware who had a relapse but in theory I guess it could happen. What would happen if you tried the device again after a long gap is anyone's guess but if you look at drug tolerance, usually that tolerance eventually wears off although it takes a long time. So if the effect wears off I suspect the brain is shifting back to the state it was that allowed the effect to happen in the first place, hence you could repeat it.

 

[Robert Aleman]

Will Lenire work for hyperacusis?

 

[Autumnly]

Will Lenire work for hyperacusis?

According to the interview it won't, the Loudness Discomfort Levels of the participants with hyperacusis did not significantly improve, so they conlcuded that Lenire isn't helping with hyperacusis. However, people with hyperacusis responded the most to Lenire in terms of tinnitus improvement.

 

[Allan1967]

We will know within weeks of Leniere's release if this thing is going to work on a mass scale, how much and for how long. My gut feeling is that it will indeed help some people but will not be the sweeping changes everyone is hoping for. Just as your brain can adapt to changes in hearing with tinnitus, I also think that it will equally adapt to stimulation of the brain meaning it may very well find was to bring back tinnitus.

Of course, this is just my opinion and I am not a scientist but there must be a reason why even the people who had the best results only responded temporarily. Even past devices which supposedly worked such as VNS stimulation was only temporarily effective.

I do not except much success with my type of reactive tinnitus which can be whisper quiet one day or more and screaming loud other days.

Why not?

 

[linearb]

I do not except much success with my type of reactive tinnitus which can be whisper quiet one day or more and screaming loud other days.

You may have more reactivity than I do, but FWIW my tinnitus is also quite variable and I did feel the UMich device helped significantly; in fact a big part of it was that it seemed to remove that variance, or at least constrain it, down into the lower echelons of intensity.

Just as your brain can adapt to changes in hearing with tinnitus, I also think that it will equally adapt to stimulation of the brain meaning it may very well find was to bring back tinnitus.

This is a concern, but for one thing Neuromod claims their data actually indicates a cumulative positive effect, and no one I spoke to at UMich seemed to think this was that likely, given continuous access to the device.

Put differently -- in the normal, pre-damaged state, there was no tinnitus. This device is trying to trick the DCN into thinking it's getting a normal amount of audio input. Could the brain adapt to that trick? Sure, but even if it's a "use it for 4 months, then need a 2-month washout period before using it again" that would be a big deal.

 

[Ruse]

So if my THI is 58 and if I get 7 to 10 points reduction on the THI [at best] from Lenire, I'm looking at 48 which is a moderate handicap?

I'm beginning to wonder if it's worth it.

Am I getting this right?

I believe the leaked TENT-A2 results showed on average a reduction of 18-20ish points in the THI score (if I remember correctly).

That would put you down to a 38-40 points which is where I am at now. Not pleasant but manageable!

 

[acute]

Also @kelpiemsp here might share his experience

@kelpiemsp was in Neuromod's Lenire clinical trial?

 

[Don Tinny]

@kelpiemsp was in Neuromod's Lenire clinical trial?

No. University of Minnesota.

 

[acute]

No. University of Minnesota.

Oh no... Disappointment. Thank you for answering me.

We only have @Clare B in this forum that was in Neuromod's Lenire clinical trial?

 

[Don Tinny]

Oh no... Disappointment. Thank you for answering me.

Well... both are bimodal neuromodulation. Keep your hopes high. haha.

 

[Allan1967]

I believe the leaked TENT-A2 results showed on average a reduction of 18-20ish points in the THI score (if I remember correctly).

That would put you down to a 38-40 points which is where I am at now. Not pleasant but manageable!

Would you like to swap?

 

[Michael Leigh]

I don't deny I'm a wimp. I've been dealing with this shit for 23 years and in the last 8 months it's been hell.

Hi @Allan1967

You are being far too hard on yourself and possibly comparing your tinnitus and how it affects you to other people with the condition. If I am correct, then this is entirely the wrong thing to do. Tinnitus comes in many forms and intensities and no two people experience it the same. There are many factors involved and the most important, is how it affects our mental and emotional well-being.

You are much stronger than you think, for the simple fact you are managing to cope with the condition by whatever means and still here on solid ground.

All the best
Michael

 

[kelpiemsp]

@kelpiemsp was in Neuromod's Lenire clinical trial?

My trial was designed and run by Neuromod's Chief Scientific Officer, Hubert Lim. We have reason to believe the outcomes and effects will be very similar!

 

[PureNoise]

We who have the dubious honor of being experienced tinnitus sufferers must warn any newbies that Lenire is NOT regenerative medicine, so it is NOT license to abuse your ears.

Lucking out by having Lenire work for you and then going to a loud party would be like winning a pile of money, then throwing a lit match at it to see whether it burns.

I for one will not relax my precautions one bit if Lenire works for me. My ongoing 30-year ride through tinnitus hell was quite enough for a lifetime.

My trial was designed and run by Neuromod's Chief Scientific Officer, Hubert Lim. We have reason to believe the outcomes and effects will be very similar!

Hell yeah.

 

[Mentos]

My trial was designed and run by Neuromod's Chief Scientific Officer, Hubert Lim. We have reason to believe the outcomes and effects will be very similar!

We know your tinnitus improved after treatment vs. the spike you experienced in 2018.

Is your tinnitus now even lower than it was before 2018?

 

[Heinrich_S7]

My trial was designed and run by Neuromod's Chief Scientific Officer, Hubert Lim. We have reason to believe the outcomes and effects will be very similar!

Exactly, Hubert Lim is why I trust Neuromod.

 

[lambos]

If my quite severe tinnitus happened to drop by 10-20% in volume with this kind of treatment I would be absolutely elated!

Also what makes me curious is what if one had a few 6 week sessions and what that might potentially do as far as bringing the volume down even further if one had good luck using the device during the first round of treatment?

Lastly I am quite excited about trying this treatment at some point with the hope of getting permanent relief and quite frankly I would give my last dollar if it meant turning the volume down of this horrible ailment!!

 

[Don Tinny]

Could longer periods of treatment put our tongues at risk?

If I`m not wrong in the trial there were a few (very few) cases of ulcer. Of course, it is not something serious like tinnitus.

 

[Allan1967]

Could longer periods of treatment put our tongues at risk?

If I`m not wrong in the trial there were a few (very few) cases of ulcer. Of course, it is not something serious like tinnitus.

They can strap it to my Charlie and fry it as long as it gets rid of this noise.

 

[Jcb]

They can strap it to my Charlie and fry it as long as it gets rid of this noise.

 

[M.K.]

I think that we're all very anxious about whether this will work on us or not which is where all the negativity/skepticism comes from.

I just want to wish to every single person who tries Lenire or any other upcoming actual treatment to find some relief. As a fellow sufferer, I know how much tinnitus sucks... and that's an understatement at least. However, a positive mind is more susceptible to positive change.

 

[TealD]

My tinnitus just got louder today. I'm only a month in but dear God please make Lenire work.

 

[GlennS]

Also what makes me curious is what if one had a few 6 week sessions and what that might potentially do as far as bringing the volume down even further if one had good luck using the device during the first round of treatment?

In Lim's presentation they say that the improvement flatlines after a while. Then they tried to mix up the timing half-way through and it drove some additional improvement and that's where they currently are as far as maxing things out. So no, it doesn't sound like continuing to use it beyond the prescribed period would help, but that's just where they are now with it. Still early days...

 

[jay777]

Is it too much to ask if the three contenders could start collaborating for the greater good?

 

[Manny]

In Lim's presentation they say that the improvement flatlines after a while. Then they tried to mix up the timing half-way through and it drove some additional improvement and that's where they currently are as far as maxing things out. So no, it doesn't sound like continuing to use it beyond the prescribed period would help, but that's just where they are now with it. Still early days...

The Vimeo video is no longer up, but I don't believe Hubert Lim said that. I believe he said that switching up the timing resulted in a greater quantity of improvement months after the conclusion of treatment than did constant timing. But none of the treatment periods were longer than six weeks, so the effects of repeated treatments remain to be seen.
That is what I believe he said, but of course I may be wrong.

 

[PureNoise]

My tinnitus just got louder today. I'm only a month in but dear God please make Lenire work.

Mine was SUPER LOUD in month 2 and 3. I am 5 months in and the volume has decreased a lot. From like 9/10 which was INSANELY LOUD to mainly hearing it pretty loudly in quiet surroundings at 5 or 6/10.

It should get quieter over time if you protect your ears. The beginning for most people is the worst. Some people don't see improvements in volume until 6-8 months.

 

[Fabrikat]

Is it too much to ask if the three contenders could start collaborating for the greater good?

Sadly yes. That's not how capitalism works. You're describing a socialist medical model.

 

[GlennS]

I believe he said that switching up the timing resulted in a greater quantity of improvement months after the conclusion of treatment than did constant timing.

My recollection is that the treatment had the most effect after six weeks (roughly the halfway point) and the remainder of the treatment period was turning into sort of a waste of time, so that's when they started experimenting with mixing up the timing for the remainder, which resulted in some additional improvements.

 

[GlennS]

Is it too much to ask if the three contenders could start collaborating for the greater good?

They kind of are if you consider Hubert Lim jumping ship. He will take his expertise from Susan Shore with him.

That being said I'm not sure how I feel about Susan Shore continuing as though Neuromod doesn't even exist. I guess she (or Minnesota) may come up with approaches that are better than Neuromod, but if you're talking about total number of participants, Lenire is poised to dwarf the other two, which means they should be able to gather orders of magnitude more data and hopefully learn a lot more from that.

It could very well be that the anatomical point of stimulation does matter but after reading through these threads I see no data to indicate any clear advantages of one vs. another. If there are it will be deduced by trial and error.