Lenire — Bimodal Stimulation Treatment by Neuromod

[Ruse]

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!

View attachment 32259

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

Just signed up as a Patreon to kickstart this (not sure if anyone else has done so yet).

Seems more than reasonable to me.

If you can't find 20 people to donate $2 a month then that would be incredibly sad / disappointing for the amount of time and work that goes into all of this.

 

[GregCA]

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.

Watch Susan Shore's presentation on bimodal stimulation. It's explained there.

 

[ChrisBoyMonkey]

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.

Susan Shore explains that the sound before electrical stimulation depresses the hyperactivity while electrical stimulation with a sound afterwards increases it.

 

[F-u-T]

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.

Read this article:

https://stm.sciencemag.org/content/10/422/eaal3175

It is the combination of electrical stimulation and auditory stimulation to the DCN in the brain that affects the hyperactive (tinnitus causing) fusiform cells. The timings and durations of these two stimulations either calm or further excite the hyperactive fusiform cells.

Here is an important part of the research article:

"Six bimodal intervals were studied (sound preceding electrical stimulus by 5, 10, or 20 ms or electrical stimulus preceding sound by 5, 10, or 20 ms) in a separate series in a randomized order; physiological measurements preceded and followed each series (see table S1 for STDP learning rule types across unit/unit pairs). To quantify synchronous firing, we measured peak cross-correlation coefficients between spontaneous spike trains from fusiform cell pairs. In one representative unit pair, the peak cross-correlation coefficient decreased after auditory-preceding-somatosensory stimulation (−10-ms interval) but increased after somatosensory-preceding-auditory stimulation (10-ms interval)."

In simple terms: Sound before shock by -5 ms or -10 ms calms fusiform cells making tinnitus lower. Sound after shock by 5 ms or 10 ms excited fusiform cells making tinnitus worse.

That is why the timing is crucial. That is why Bluetooth latency of just milliseconds could be the difference from making tinnitus better or worse. That is why one device could be better than the other.

 

[Helheim]

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!

View attachment 32259

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

Well, if the podcast is going to be audio only I won't be able to listen to it (I can't really focus on audio alone anymore due to tinnitus, there has to be video) but I figure you guys deserve a little support, even though I'm broke as hell.

Let's do this.

Will there be a transcript? I can't listen, but I can read the podcast if there's one.

 

[Autumnly]

Will there be a transcript? I can't listen, but I can read the podcast if there's one.

Yes, there are always transcripts for each podcast episode.

 

[Bartoli]

In simple terms: Sound before shock by -5 ms or -10 ms calms fusiform cells making tinnitus lower. Sound after shock by 5 ms or 10 ms excited fusiform cells making tinnitus worse.

In the study they used 5 ms increments, for need of a protocol. This seems arbitrarily chosen. They might be able to tweak the treatment and investigate if smaller increments yield better results. I am surprised the timing is so crucial, as I read somewhere humans can only detect latency of 6 ms or greater (according to Yamaha).

 

[ruud1boy]

Just signed up as a Patreon to kickstart this (not sure if anyone else has done so yet).

Seems more than reasonable to me.

If you can't find 20 people to donate $2 a month then that would be incredibly sad / disappointing for the amount of time and work that goes into all of this.

I'm in as well. I don't really have much to offer in the way of skills - unless anyone needs consumer debt counselling / advice - so I'll offer hard cash instead.

 

[EDDTEKK]

Posted today via LinkedIn:

Looking forward to our Chief Scientific Officer, Prof. Hubert Lim's presentation "Long-term benefits with combined sound and trigeminal nerve stimulation for the treatment of tinnitus" at EUHA 2019 in Nuremberg Germany this week.

64th International Congress of Hearing Aid Acousticians

 

[Hazel]

Well, if the podcast is going to be audio only I won't be able to listen to it (I can't really focus on audio alone anymore due to tinnitus, there has to be video) but I figure you guys deserve a little support, even though I'm broke as hell.

Let's do this.

Will there be a transcript? I can't listen, but I can read the podcast if there's one.

First of all, a big thank you for wanting to support us! Especially considering you don't have much yourself

And to answer your question, yes we always create transcripts of our podcast episodes. These are done by @Liz Windsor.

 

[AliceW]

Any updates from users approaching the end of Lenire treatment?

 

[Ivkopivko]

Any updates from users approaching the end of Lenire treatment?

I don't think so. If there was something to report, or people were experiencing some meaningful improvement - they would probably be more than happy to spread the great news already.

I hope I'm soooo wrong!

 

[jmasterj]

I don't think so. If there was something to report, or people were experiencing some meaningful improvement - they would probably be more than happy to spread the great news already.

I hope I'm soooo wrong!

I know that @Clare B said her results came some time after she ended the treatment. I know at least one user here was asked to continue the treatment for 18 weeks. I would guess it would be early next year when we get some true reports/results.

 

[Aubie]

I just signed up as a Patreon.

Thank you for your dedication and efforts.

Looking forward to the upcoming podcast.

 

[ChrisBoyMonkey]

I'm looking forward to updates from the users. As in if those seeing benefits are still seeing them or those that didn't see much benefit still haven't seen any.

 

[Cojackb]

Any updates from users approaching the end of Lenire treatment?

I've got my final appointment on Friday which will mark the end of my treatment. I've yet to notice any improvement in my tinnitus and have run this by the Neuromod team late last week. I even discussed whether it was worth attending the final appointment or whether it was more of a formality.

They were very quick to respond and assured me these kind of results / responses to treatment is nothing they haven't already seen in both private and trial patients. They also went on to say the final appointment is equally as important as they need to make further adjustments to the stimulation program on the device.

I will be asking questions around whether they advise taking a break from the treatment or to continue and for how long, so will report back when I've returned.

 

[AliceW]

@Cojackb

I also have my appointment on Friday at 2:30 pm.

Will you be there?

 

[DaveFromChicago]

To Cojackb:

If this is a final appointment, and you've run through the designated number of weeks, why do they still require a "final adjustment"?

Also, just what did they mean by "this (lack of response) is nothing that they have'nt seen before"?

I hope they mean that:
1) You may have to extend this for more weeks until they find the exact sound/calibration , or
2) An improvement, although not at present, may be eventually, retroactively experienced.
Otherwise, I frankly do not know how to apply a positive interpretation on this.

Thanks very much for this report. Please let us know the outcome of this Friday meeting.

 

[Cojackb]

@Cojackb

I also have my appointment on Friday at 2:30 pm.

Will you be there?

My appointment is at 11:15, I imagine I'll be back at the airport by 2:30 but I may be able to hang around at the clinic for a while.

What time are you due to arrive?

 

[jmasterj]

I thought you all might find this quote interesting from the Neuromod website and their TENT-A2 study.

"We thank Dr. Susan Shore (Professor, University of Michigan, USA) and Dr. Rebecca Dewey (Research Fellow, University of Nottingham, UK) for their time and expertise in reviewing our TENT-A2 study protocol paper as part of the journal's peer review process and improving its scientific rigour and clarity for publication."

Source

 

[Cojackb]

To Cojackb:

If this is a final appointment, and you've run through the designated number of weeks, why do they still require a "final adjustment"?

Also, just what did they mean by "this (lack of response) is nothing that they have'nt seen before"?

I hope they mean that:
1) You may have to extend this for more weeks until they find the exact sound/calibration , or
2) An improvement, although not at present, may be eventually, retroactively experienced.
Otherwise, I frankly do not know how to apply a positive interpretation on this.

Thanks very much for this report. Please let us know the outcome of this Friday meeting.

Good questions.

I can only comment on the small discussions I've had with Neuromod about my final appointment but from what they said, the final follow up, like the others will still consist of an adjustment to timings. I assume, like the other adjustments this is to maximize the potential benefits from the treatment (as seen in their trials).

Regarding the comments from Neuromod around having seen this behaviour before. They were indicating that other patients had gotten to similar points in their treatment programs in both private and trial conditions with similar results. They then went on to say that this certainly did NOT classify me as a "non-responder" and that positive results have been seen at the later stages of treatment and onward.

Basically I'm not down and out just because we're approaching 12 weeks with no changes. They're not at all concerned about my progress and it's something they can and have dealt with.

We're all wired differently, we'll all respond differently and I'll certainly persist until the point I feel like I'm flogging a dead horse.

 

[Ruse]

Good questions.

I can only comment on the small discussions I've had with Neuromod about my final appointment but from what they said, the final follow up, like the others will still consist of an adjustment to timings. I assume, like the other adjustments this is to maximize the potential benefits from the treatment (as seen in their trials).

Regarding the comments from Neuromod around having seen this behaviour before. They were indicating that other patients had gotten to similar points in their treatment programs in both private and trial conditions with similar results. They then went on to say that this certainly did NOT classify me as a "non-responder" and that positive results have been seen at the later stages of treatment and onward.

Basically I'm not down and out just because we're approaching 12 weeks with no changes. They're not at all concerned about my progress and it's something they can and have dealt with.

We're all wired differently, we'll all respond differently and I'll certainly persist until the point I feel like I'm flogging a dead horse.

I think the future of this will be more targeted / personalised treatment as Dr. Ross mentions in the first Q&A video.

Hang in there Cojackb! Disappointing that you've had no improvement though I suspect a fair few will get some relief with different settings after the 12 weeks.

 

[LostOutWest]

Hi all - does anyone know if Neuromod is booking new appointments at all during this time? I know they are compiling a waitlist, but it's unclear if they are actively working it, or just compiling. Thank you!

 

[acute]

Hi all - does anyone know if Neuromod is booking new appointments at all during this time? I know they are compiling a waitlist, but it's unclear if they are actively working it, or just compiling. Thank you!

They are doing nothing. I do not understand why it is so difficult for them to contact people for the 2020 appointments. People are suffering, and even without satisfactory results published here about Lenire we still want to give them our money and try the treatment.

Why is it so hard to give us a date by now? They said they would start contacting us by email in September - October. I can see that October is ending and still nothing.

 

[AliceW]

@Cojackb

I will probably arrive at the clinic at 2:00 pm. If you are at the clinic at that time, keep me updated.

 

[DaveFromChicago]

To Cojackb:

Thanks for the response.

I believe they have every reason to be sincere about how there are often positive results after the treatment completion.

For my purposes in trying this when it comes to Chicago, I would be interested if they have a general time range for when improvements after the treatment have usually started to occur (based on their data regarding previous patients).

 

[ChrisBoyMonkey]

Good questions.

I can only comment on the small discussions I've had with Neuromod about my final appointment but from what they said, the final follow up, like the others will still consist of an adjustment to timings. I assume, like the other adjustments this is to maximize the potential benefits from the treatment (as seen in their trials).

Regarding the comments from Neuromod around having seen this behaviour before. They were indicating that other patients had gotten to similar points in their treatment programs in both private and trial conditions with similar results. They then went on to say that this certainly did NOT classify me as a "non-responder" and that positive results have been seen at the later stages of treatment and onward.

Basically I'm not down and out just because we're approaching 12 weeks with no changes. They're not at all concerned about my progress and it's something they can and have dealt with.

We're all wired differently, we'll all respond differently and I'll certainly persist until the point I feel like I'm flogging a dead horse.

It's very good to know that even if you haven't seen an improvement yet, you still might see it later on, because that's what they saw in their trials. It's very reassuring. Thank you for updating us.

 

[Meiro]

Neuromod has released a German version of the Lenire website

https://www.lenire.ie/de

If somebody from Neuromod reads this, first of all congrats, second, tell your webdesign agency that on the German version on small mobile version 320px go to the .safety_button>a selector and change the font size to 13px, then it will not overflow the Lenire logo.

Guten Nacht

 

[Helheim]

Neuromod has released a German version of the Lenire website

https://www.lenire.ie/de

If somebody from Neuromod reads this, first of all congrats, second, tell your webdesign agency that on the German version on small mobile version 320px go to the .safety_button>a selector and change the font size to 13px, then it will not overflow the Lenire logo.

Guten Nacht

Interesting news. Germany is somewhat closer to me than Ireland, although I'd still have to fly as it's a 11 hour car/train trip...

 

[Autumnly]

They are doing nothing. I do not understand why it is so difficult for them to contact people for the 2020 appointments. People are suffering, and even without satisfactory results published here about Lenire we still want to give them our money and try the treatment.

Why is it so hard to give us a date by now? They said they would start contacting us by email in September - October. I can see that October is ending and still nothing.

They are simply overwhelmed by the number of people applying for Lenire. They're not just doing nothing.

Hoping the manual will be available for everyone!