Lenire — Bimodal Stimulation Treatment by Neuromod

[Bob90]

Correct me if I'm wrong but they haven't been working on their project as long as she has. They are also prepping/running a new trial now so the project just seems more active (albeit pretty grass-roots).

Thank you. I'll take a look at their thread myself a bit later. Most of my focus has been on Lenire, for obvious reasons, but some have said in this thread that the other 2 devices coming are more promising.

I'm right there with you in that I would like these devices widely available as soon as possible. While I consider the tinnitus I have now to be manageable, there's always the possibility of it becoming... unmanageable.

 

[ruud1boy]

I wish that someone would ask her the million dollar question, which all of us are waiting for.

When is her device supposed to be available?

Surely the question should be 'does it work?'

 

[antonio77]

Hi GlennS. I have seen that you have had tinnitus since 1992, I have had it since 1991 (I hope they give me some prize for antiquity), but I also just saw that you are 49 years old, do you know how old I am? 49.

My tinnitus has increased several times in these 28 years. I have never heard if intense physical exertion increases tinnitus. For me, no doubt. A few weeks ago I went back up for intense physical effort, and it still hasn't come down, I'm afraid it will stay that way.

I follow you because you have a lot in common with me, if you do well Lenire, surely me too.

 

[DaveFromChicago]

Given the appalling pervasiveness and desperate need to remedy this condition, I cannot believe that all sorts of Venture Capitalist Consortiums are not aware of and exerting their influence to locate the most expeditious Agency for marketing some version of this Trigeminal Nerve/Sound Therapy.

(After all, how was I able to easily avail myself of Desyncra; how was a device that was so useless for me passed through the FDA Approval Pipeline sooner than 12/2016?).

 

[GlennS]

...if you do well Lenire, surely me too.

I canceled my November appointment. I will try it if the user reports improve between now and when it arrives in the US.

 

[Bndsmheowqhe]

So that's what it's come to? Reading body language? Look, it's easy to have faith in a treatment when it may not be out for years (and is therefore not facing its moment of truth the way Lenire is now). And the reason it won't be out for years, IMHO, is the way she's going about it is sluggish and inefficient. The ideal would probably be somewhere inbetween Neuromod and Susan Shore rather than one extreme or the other, both of which have drawbacks. The drawback that matters most to me is the fact I'm 49 and so every year that goes by is one year less of hypothetical quality of life I could obtain if a treatment delivers salvation. So it makes me a little upset if one of these projects seems to be dragging more than it really needs to.

For instance, if she's having trouble finding candidates, why can't she work remotely? Setup shop here at Boston Eye & Ear and I'll volunteer to be a test subject. It's the 21st century. Why does everything have to be done through her office and only her office? Believe me, there are ways to expedite this if she really wanted to do so rather than being at the mercy of local demographics. Not enough money? GET the money. There are ways to do that but I don't think that's her core competence.

My gut instincts about the Neuromod situation appear to be (by your words) more credible with every passing week.

Why don't we circle back to this discussion in another year and see if I was at least pointing in the right direction.

 

[GlennS]

My gut instincts about the Neuromod situation appear to be (by your words) more credible with every passing week.

True, but if your gut instincts about Neuromod are validated it doesn't necessarily mean Susan Shore's going to be our savior.

 

[Bndsmheowqhe]

True, but if your gut instincts about Neuromod are validated it doesn't necessarily mean Susan Shore's going to be our savior.

She's the next logical vessel of hope. Personally, I have the most faith in the University of Minnesota device as being the highest caliber of the three but the release of an actual device by them seems uncertain. Shore seems to fit somewhere in between the other two in terms of possibility of coming to market and overall potential efficacy.

 

[Demigod]

People keep on repeating the same arguments against (and for, but mainly against) Lenire for the last many pages.

Just a word of advice, you repeating the same arguments does not help anybody, it just becomes tiring. You have been heard and your opinion has been recorded, please let us keep this thread for what it should be, posting information regarding Lenire.

 

[DaveFromChicago]

To Harley:

Thanks for the Good Question response.

I recall that when I finished with Desyncra, I asked the audiologist (whose office was in the most expensive part of Downtown Chicago) how many other patients she had actually signed up during this 36 week period. She said that, including myself, a total of nine.

"Nine?", I gasped; given the pervasiveness of this condition and us being in the third largest city in the USA, that's all?

Also, many prospective patients in that part of Chicago would have easily had the disposable income to afford this without insurance coverage.

She further admitted that there were numerous appointments made that were either cancelled at the last minute or no-shows.

I had to conclude that the skepticism about it's effectiveness was the cause of this lack of participation.

I believe there were only two other audiologists in our heavily populated Metropolitan area that also offered this, and it is difficult to imagine how profitable such a venture could be with this low response.

I wonder if other Venture Capitalist Consortiums are aware of the above and are taking a wait-and-see approach to the real paid-for patient responses to Lenire and similar therapies.

 

[linearb]

True, but if your gut instincts about Neuromod are validated it doesn't necessarily mean Susan Shore's going to be our savior.

I have been saying since I was in that trial that no one should be expecting Shore to be their savior, because by their own explicit admission to me, "if we can get a device to market which can substantially reduce tinnitus in a significant minority of people, say 25%, we'd consider that a huge win".

I would also consider it a huge win, but it'd leave 75% of people out in the rain for the moment.

Rule number one of tech culture is, don't put faith in vaporware.

 

[Dizzyhead888]

I was reading that Susan Shore's device targets the trigeminal nerve, the same as Lenire, but her device also targets two other nerves C1,C2 somatosensory. So it seems to be similar.

So Lenire and University of Michigan device stimulate the same nerve? Who can confirm?

If they do, then that's not promising... if you don't get benefit from Lenire, you probably won't from University of Michigan.

 

[Harley]

To Harley:

Thanks for the Good Question response.

I recall that when I finished with Desyncra, I asked the audiologist (whose office was in the most expensive part of Downtown Chicago) how many other patients she had actually signed up during this 36 week period. She said that, including myself, a total of nine.

"Nine?", I gasped; given the pervasiveness of this condition and us being in the third largest city in the USA, that's all?

Also, many prospective patients in that part of Chicago would have easily had the disposable income to afford this without insurance coverage.

She further admitted that there were numerous appointments made that were either cancelled at the last minute or no-shows.

I had to conclude that the skepticism about it's effectiveness was the cause of this lack of participation.

I believe there were only two other audiologists in our heavily populated Metropolitan area that also offered this, and it is difficult to imagine how profitable such a venture could be with this low response.

I wonder if other Venture Capitalist Consortiums are aware of the above and are taking a wait-and-see approach to the real paid-for patient responses to Lenire and similar therapies.

Considering all the dubious tinnitus devices, that have hit the market in the past, the wait-and-see approach is probably the logical result of tinnitus sufferers getting scammed over and over again by predatory entrepreneurs, whom could sense their desperation.

I feel that the tinnitus community is currently experiencing some big trust issues because of all this and of course those lessons are not lost on the Capitalist Consortiums, whom will not part with their money very easily.

Just for the record, I don't think that Lenire is a scam.
Bimodal stimulation is real and eventually it will most likely set us free, but there are some bugs that they need to work out first (as with any new emerging technology).

 

[DaveFromChicago]

A highly rated ENT Doctor I saw also felt that this bimodal stimulation showed serious promise (but as you indicated, was still in the stage of relative infancy).

 

[alex1975]

So Lenire and University of Michigan device stimulate the same nerve? Who can confirm?

If they do, then that's not promising... if you don't get benefit from Lenire, you probably won't from University of Michigan.

Yes, they both stimulate the trigeminal nerve. Lenire does it via the tongue and Shore's does it around the neck or ears depending on if you can make it fluctuate with your neck muscles.

Perhaps they're different due to patents...

The only difference I see is the tone that is played in your ears: Lenire's is a sound customized to you and Shore's matches your tinnitus.

 

[F-u-T]

So Lenire and University of Michigan device stimulate the same nerve? Who can confirm?

If they do, then that's not promising... if you don't get benefit from Lenire, you probably won't from University of Michigan.

Bimodal stimulation is all about the timing and sequencing of stimulation. If Lenire and University of Michigan's device are stimulating the same nerve but using different timings, then they would have different effects. You may get worsening from Lenire but improvement from University of Michigan's device due to their timing differences.

 

[Aubie]

Does anyone know if you must be able to match your tinnitus pitch exactly to use Dr. Shore's device? What about Lenire? Does matching mean you can isolate the exact pitch you hear?

 

[valeri]

I canceled my November appointment. I will try it if the user reports improve between now and when it arrives in the US.

How did you qualify for Lenire if you have had tinnitus since 1992?
Isn't 10 years top mark they will accept?

 

[ChrisBoyMonkey]

How did you qualify for Lenire if you have had tinnitus since 1992?
Isn't 10 years top mark they will accept?

That limit was only for the clinical trial.

 

[Mentos]

Yes, they both stimulate the trigeminal nerve. Lenire does it via the tongue and Shore's does it around the neck or ears depending on if you can make it fluctuate with your neck muscles.

Perhaps they're different due to patents...

The only difference I see is the tone that is played in your ears: Lenire's is a sound customized to you and Shore's matches your tinnitus.

Does this mean that Dr. Shore's device is for tonal tinnitus only?

 

[Dizzyhead888]

Bimodal stimulation is all about the timing and sequencing of stimulation. If Lenire and University of Michigan's device are stimulating the same nerve but using different timings, then they would have different effects. You may get worsening from Lenire but improvement from University of Michigan's device due to their timing differences.

I don't know about the scientific impact of the timing and sequence so I can't comment. My gut feeling is that it's not that important. You are sending electric signals through the nerve to calm it down.

 

[Daniel Lion]

I don't know about the scientific impact of the timing and sequence so I can't comment. My gut feeling is that it's not that important. You are sending electric signals through the nerve to calm it down.

Your gut feeling is wrong, timing and sequence are crucial.

 

[acute]

I wonder once again why it takes so long to acquire the device after the first visit.

As @Annpann said in the Lenire User Experience thread, she had her first visit around October 12 and she will not return to pick up the device until December 17th... It's such a long time to wait and I don't understand why.

Also, they were supposed to start contacting us in September-October for the 2020 appointments. Still no e-mail... Still waiting. There are three weeks left until October ends, we'll see what happens...

Sorry, I don't want to be a mood-killer.

 

[Harley]

I don't know about the scientific impact of the timing and sequence so I can't comment. My gut feeling is that it's not that important. You are sending electric signals through the nerve to calm it down.

The timing is everything, as success or failure is quite literally measured in milliseconds.

 

[GregCA]

Your gut feeling is wrong, timing and sequence are crucial.

It's the whole point of the treatment, actually.

 

[Annpann]

I wonder once again why it takes so long to acquire the device after the first visit.

As @Annpann said in the Lenire User Experience thread, she had her first visit around October 12 and she will not return to pick up the device until December 17th... It's such a long time to wait and I don't understand why.

Also, they were supposed to start contacting us in September-October for the 2020 appointments. Still no e-mail... Still waiting. There are three weeks left until October ends, we'll see what happens...

Sorry, I don't want to be a mood-killer.

I did ask why there was such a long wait and was told that there was a high demand for the device. I asked about cancellations to bring the date forward and they said there are very very few cancellations.

 

[Dizzyhead888]

The timing is everything, as success or failure is quite literally measured in milliseconds.

I am not disagreeing, but what's your source? Why do you think so?

I fail to fathom how milliseconds of difference in an electric signal would change calming the nerve.

 

[Harley]

I am not disagreeing, but what's your source? Why do you think so?

I fail to fathom how milliseconds of difference in an electric signal would change calming the nerve.

Honestly I don't think I can produce a link and I don't have much energy to look for one either, but I remember reading about the importance of precise timing on several occasions.
Maybe someone can confirm this?

The whole concept in a nutshell is something like this:

Imagine that an orchestra is playing music, while all of a sudden someone in the audience starts banging trash can lids against each other in a rhythm that is slightly different from the rhythm of the orchestra.
This will lead to confusion and the orchestra will start playing out of sync, possibly even come to a grinding halt.

Now imagine that this orchestra is tinnitus and the guy in the audience banging the trash can lids is the bimodal stimulation.

Conversely, if the guy banging the trash can lids happens to actually sync with the orchestra, it could quite possibly make the tinnitus that much stronger (if you understand my analogy attempt).

So yes, timing is crucial.
This is why I question Lenire's choice to use Bluetooth headphones, knowing that this will make the signal timing less reliable.
This could be quite possibly the reason why some Lenire users are experiencing "disimprovements" in their tinnitus.

 

[Daniel Lion]

I am not disagreeing, but what's your source? Why do you think so?

I fail to fathom how milliseconds of difference in an electric signal would change calming the nerve.

Think about how fast your brain works... that's less than milliseconds.

 

[Hazel]

Dearest members,

Last Tuesday I recorded our podcast interview with Dr. Ross O'Neill. It went very well. Many of the questions posted in this thread were answered, so I hope it will calm down the discussion a bit and reduce the need for speculation.

But there's still quite a bit of work to be done before we can publish the podcast episode. We have two hours of recording, which is too much normally for one podcast episode, so we're trying to figure out how to publish it. We could create one long episode, or two episodes, or one episode + bonus content for our Patreon supporters.

The latter option would be intended as an incentive for people to support us financially. After all, we are providing content for which there is clearly demand (this thread alone has been viewed over 600,000 times!), and we're doing so on a volunteer basis and with very limited resources. By the time we publish the Neuromod episode, we'll have probably put in close to 100 hours to create it.

On the other hand, our policy up to now has ALWAYS been that we don't want to put up any barriers to access information. This is the dilemma. Hence, we could also say: If we get 20 new Patreon supporters in the next 10 days (i.e. the period of time we'll likely need for editing, reviewing, transcribing, and publication) then we'll publish all of the content for free. Twenty new supporters, bringing the number to 42 supporters, would nearly double the number we currently have (as of writing this, we have 22 supporters, including myself, @Markku and @Jack Straw - so in addition to volunteering our spare time, we also put our own money into this too).

You can become a Patreon supporter of the Tinnitus Talk Podcast for as little as 2 dollars per month!



Please let us know what you think of the above. Our actions are always first and foremost inspired by this community, so we'll take our cue from you guys.

Best regards,
Hazel