Lenire — Bimodal Stimulation Treatment by Neuromod

[Sevv]

0-20 normal hearing, 20-40 mild hearing loss. 20 dB dip is borderline.

Isn't the margin of error like ±5 dB? I've taken quite a few and have never seen an audiogram take smaller steps than 5 dB increments. Audiograms are such a rudimentary way of measuring hearing loss.

Guess it depends a bit on the country and/or source. But yeah, mild starts at 20/25 dB loss.

 

[GSC]

What do you guys think about these?
Is this mild hearing loss?

View attachment 31193 View attachment 31194

They would consider that mild hearing loss, but that's a big dip when compared to your other decibels of hearing. I think Neuromod tests higher frequencies as well.

Can you hear higher frequencies? I haven't been on a lot, so I'm not exactly the most resourceful when it comes to this, but hopefully they'll be able to calibrate to your hearing loss if they accept you to go through with the treatment. Protect your hearing until then. I think tat dip is definitely a noise notch.

Over here, 15 dB is considered mild hearing loss. But with tinnitus, you never know if you were capable of hearing -5 dB or 0 dB before, and now have a flat line of 10 dB, therefore, you lost 10 dB or 15 dB of hearing. Something to think about maybe.

 

[Allan1967]

@kelpiemsp

Could you describe the treatment you received please and did it make your tinnitus worse at anytime before it got better?

 

[LanaK]

Hi Sevv, Yes we already have a question which asks if the participant has Visual Snow at baseline, but no questions about changes. There are some questions with free text responses, and changes in Visual Snow could be entered there.

Is the question about potential reduction in hyperacusis also included in the survey (for those who have both tinnitus and hyperacusis)?

 

[Phi]

@kelpiemsp

Could you describe the treatment you received please and did it make your tinnitus worse at anytime before it got better?

Hi Allan,

Has yours started to get worse?

 

[Annpann]

@kelpiemsp

Could you describe the treatment you received please and did it make your tinnitus worse at anytime before it got better?

Could it be a normal spike? This weather has made mine a lot a worse the last few days. It might put your mind at rest if you contact Neuromod and ask.

 

[Allan1967]

Hi Allan,

Has yours started to get worse?

A tad... and old fainter sounds that had disappeared a while ago are resurfacing.

However it does say in the manual that it's not unusual for tinnitus to 'disimprove or fluctuate' and to continue with the treatment even during these periods for 10 weeks.

Only if it significantly disimproves [I had to look that up... it means go from a better state to a worse state] should you contact the clinician.

However, it would be nice to know if some on the clinical trials who experienced this pushed on and later began to see improvements.

I already know that those it got worse for in the clinical trial it went back to baseline. But I'm asking if it can get 'worse before it gets better'.

 

[Ivkopivko]

However, it would be nice to know if some on the clinical trials who experienced this pushed on and later began to see improvements.

@Clearance comes to my mind as eligible to answer but she's probably busy with life or won't understand why do you ask as it's already written in the manual...

Keep going Allan.

 

[PeterPan]

Is the question about potential reduction in hyperacusis also included in the survey (for those who have both tinnitus and hyperacusis)?

No, we just ask about hyperacusis at baseline and then ask about tinnitus changes in subsequent follow ups. I recall on the Q&A session with Neuromod that those with hyperacusis were "super responders", but only regarding their tinnitus and not their hyperacusis.

 

[Allan1967]

@Clearance comes to my mind as eligible to answer but she's probably busy with life or won't understand why do you ask as it's already written in the manual...

It isn't written in the manual that if this happens it does not necessarily mean Lenire will not work for you.

That's what I'm getting at.

It just says it's not unusual for this to happen.

 

[acute]

They would consider that mild hearing loss, but that's a big dip when compared to your other decibels of hearing. I think Neuromod tests higher frequencies as well.

Can you hear higher frequencies? I haven't been on a lot, so I'm not exactly the most resourceful when it comes to this, but hopefully they'll be able to calibrate to your hearing loss if they accept you to go through with the treatment. Protect your hearing until then. I think tat dip is definitely a noise notch.

Over here, 15 dB is considered mild hearing loss. But with tinnitus, you never know if you were capable of hearing -5 dB or 0 dB before, and now have a flat line of 10 dB, therefore, you lost 10 dB or 15 dB of hearing. Something to think about maybe.

I can hear up to 14 kHz.

But I've never done a high frequency audiometry, I've just tested one of those YouTube ones.

I agree that something has happened in that notch, it's a big drop compared to my decibels of hearing in other frequencies... I suppose that my hearing before the acoustic trauma was a straight line through all frequencies. I suppose.

I guess I won't be rejected by Neuromod with this level of hearing loss...

 

[Ivkopivko]

No, we just ask about hyperacusis at baseline and then ask about tinnitus changes in subsequent follow ups. I recall on the Q&A session with Neuromod that those with hyperacusis were "super responders", but only regarding their tinnitus and not their hyperacusis.

@Clare B, @kelpiemsp and 2 guys from TENT-A2 that I had a chance to talk to reported that their hyperacusis got "somehow sorted". For example painful dog barking reduced to "annoying", kid crying from unbearable to just slightly annoying... As if it has something to do with the overall reduction of perception of certain noises/frequencies or their loudness level.

But I'm only speculating...

 

[kelpiemsp]

@kelpiemsp

Could you describe the treatment you received please and did it make your tinnitus worse at anytime before it got better?

What exactly are you looking for in terms of description? Initially after the first few sessions, it seemed like a faint alarm bell ringing in my head. The more I used the device, the more I learned it was like peeling the layers off an onion. Underneath my dominant tone, others also existed. Slowly and surely they began to fade.

 

[LanaK]

No, we just ask about hyperacusis at baseline and then ask about tinnitus changes in subsequent follow ups. I recall on the Q&A session with Neuromod that those with hyperacusis were "super responders", but only regarding their tinnitus and not their hyperacusis.

Thanks for the answer. I know they didn't measure influence on hyperacusis, but I thought that maybe as "side effect" patients might experience change in hyperacusis too. I don't remember it was said that it has no effect on hyperacusis, just that those with hyperacusis and tinnitus responded better to the treatment.

I might be wrong too.

 

[Allan1967]

What exactly are you looking for in terms of description? Initially after the first few sessions, it seemed like a faint alarm bell ringing in my head. The more I used the device, the more I learned it was like peeling the layers off an onion. Underneath my dominant tone, others also existed. Slowly and surely they began to fade.

Well, Lenire plays 3 layered sets of music... a hiss, a distant piano and then electric chirps or beeps you could call them. At the same the tongue tip buzzes your tongue in line with the electric chirps. As Hubert Lim was involved in your trial I'm wondering if this was what they did to you too?

All I can say about mine at the minute is that it is definitely not fading and old noises that seemed to fade away on their own a while back are coming back. I'd just like to know if you experienced any periods when it seemed worse?

I'm quite concerned about it.

 

[EDDTEKK]

Is there anybody who has really understood the mechanism of the Lenire treatment?
I still have no clue and Ross O'Neill's description didn't explain it "in detail".
It was vague...

Yes, he says that bi-modal stimulation does create inhibition effects, and with regular use it shall drive brain plasticity if I remember correctly.

In terms of neuroplasticity, which area or network of the brain does the treatment target? I really would like to know more about this.

There are a lot of descriptions of chronic pain in the science world. They clearly at least try to explain the therapeutic effect of treatments and how to get there, targeting specific brain "areas" and "networks".

 

[grate_biff]

In terms of neuroplasticity, which area or network of the brain does the treatment target? I really would like to know more about this.

Dorsal cochlear nucleus. Via the trigeminal nerve.

 

[GregCA]

I can hear up to 14 kHz.

But I've never done a high frequency audiometry, I've just tested one of those YouTube ones.

You cannot rely on YouTube for high frequency audiometry, for a variety of technical reasons that I won't detail.

 

[spedgas]

Just found the ''I don't need him blogging daily'' comment a bit curt, that's all.

Of course state of mind can affect the outcome but at the same time I know what I'm hearing.

I don't think @GlennS was trying to be hurtful with his comment. Since people have been getting the device there are those here who want to hear every play by play minute spent with it. I am admittedly one of those people. However, what I think he was getting at is that maybe it isn't necessary. Perhaps we should take some of the pressure off those that have it to post after every treatment. I think he's more interested in the destination than the journey. I don't necessarily see it that way, but I think I see his point. I look forward to all your posts @Allan1967.

 

[Ruse]

Well, Lenire plays 3 layered sets of music... a hiss, a distant piano and then electric chirps or beeps you could call them. At the same the tongue tip buzzes your tongue in line with the electric chirps. As Hubert Lim was involved in your trial I'm wondering if this was what they did to you too?

All I can say about mine at the minute is that it is definitely not fading and old noises that seemed to fade away on their own a while back are coming back. I'd just like to know if you experienced any periods when it seemed worse?

I'm quite concerned about it.

Perhaps one of your more dominant tones has decreased in volume very slightly making other tones more noticeable?

Regardless I doubt that this is anything to worry about at this stage! Especially if they have already warned people that this can happen.

 

[F-u-T]

Is there anybody who has really understood the mechanism of the Lenire treatment?
I still have no clue and Ross O'Neill's description didn't explain it "in detail".
It was vague...

Yes, he says that bi-modal stimulation does create inhibition effects, and with regular use it shall drive brain plasticity if I remember correctly.

In terms of neuroplasticity, which area or network of the brain does the treatment target? I really would like to know more about this.

There are a lot of descriptions of chronic pain in the science world. They clearly at least try to explain the therapeutic effect of treatments and how to get there, targeting specific brain "areas" and "networks".

If you like reading scientific articles, this one gives a good explanation of bimodal stimulation for tinnitus.

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

 

[Heinrich_S7]

I will say one thing, it's rather frustrating that we're going into August now and it's still only at one clinic and that it's only in a handful of people's hands. I wasn't expecting a US release soon, but I was at least expecting something in Germany, the UK or Belgium by now, or at the very least some news about expansion to those countries.

You think if they had something groundbreaking that they knew for sure worked, they'd want to release it as fast as possible, not only to make tons of money but to help those suffering with this condition worldwide. At the moment, getting this thing is only a few shots short of getting into Area 51.

Honestly, it's beginning to make me somewhat skeptical. I'm not saying it isn't legit, but it doesn't sit right with me.

 

[JohnAdams]

I will say one thing, it's rather frustrating that we're going into August now and it's still only at one clinic and that it's only in a handful of people's hands. I wasn't expecting a US release soon, but I was at least expecting something in Germany, the UK or Belgium by now, or at the very least some news about expansion to those countries.

You think if they had something groundbreaking that they knew for sure worked, they'd want to release it as fast as possible, not only to make tons of money but to help those suffering with this condition worldwide. At the moment, getting this thing is only a few shots short of getting into Area 51.

Honestly, it's beginning to make me somewhat skeptical. I'm not saying it isn't legit, but it doesn't sit right with me.

Maybe there is a certain subset that this works wonders for but they aren't exactly sure and are using this roll out as a continued trial of sorts?

One thing that puzzles me is the special attention this is getting. Why are there special banners on the thread? Why doesn't R. David Case get a special banner that says "Testing Tinnitus Mix Soon?"

 

[Allan1967]

Perhaps one of your more dominant tones has decreased in volume very slightly making other tones more noticeable?

No, I can plug my ears and hear very distinctly what's going on & right now it's horrendous.

 

[Hazel]

One thing that puzzles me is the special attention this is getting. Why are there special banners on the thread? Why doesn't R. David Case get a special banner that says "Testing Tinnitus Mix Soon?"

Hmm, it sounds a little bit like you're insinuating that Tinnitus Talk is getting something out of this? Maybe that's not what you're doing, but just in case, I want to reiterate that we have no financial or commercial ties with Neuromod. They didn't even cover our expenses for the Q&A video (@Steve paid out of his own pocket), which means - as usual - that we are at a financial loss for this project.

We are giving Lenire extra coverage and attention because that's what our members want. The many thousands of posts in this thread and the previous related threads clearly demonstrate that. We've given similar attention in the past when new treatments came out that many people were curious/excited about, like Trobalt.

The banner at the top of this thread is meant to get people who are trying the treatment to fill in a survey about their experiences. This way, we can get some objective data on whether/how the treatment works and for whom, but also what kind of customer service experience people have had. We are doing this completely independently from Neuromod, although we have informed them of the project out of courtesy.

The outcome could be in favour of the treatment or against, or mixed - we simply don't know yet and are entirely neutral on the matter. We just want people to have some objective information before deciding whether to go for this treatment. I'm sure a scientifically minded person like yourself would agree.

It's all in the service of our members and the tinnitus community at large. @Markku @PeterPan and I have probably spent over a 100 hours on this project so far - as always unpaid because we're 100% volunteer based.

 

[JohnAdams]

Maybe that's not what you're doing, but just in case, I want to reiterate that we have no financial or commercial ties with Neuromod.

I know you don't. I'm not insinuating that. I do think however that there is a relatively small group of people that seem to be steering the world of tinnitus research, namely the European School for Interdisciplinary Tinnitus Research (ESIT), which has as members, Berthold Langguth, David Stockdale who is chief executive of the BTA, and yourself.

I believe Berthold Langguth was not only the principle investigator for the TENT-A studies for Neuromod, but is also on the board of scientific advisers at Neuromod. Also, I found where Langguth, Markku, and Steve have collaborated on tinnitus research together.

I'm NOT insinuating that there is a conspiracy or that there are commercial or financial ties here at all, I'm just saying that considering how large the problem of tinnitus is, that the world of research seems to be very very small, and Berthold Langguth from the ESIT seems to be a common name that pops up over and over again. Also, the research that the ESIT has produced is really strange to me, such as topics like "Sex-Specific Association of Tinnitus with Suicide Attempts," and "Association of Genetic vs Environmental Factors in Swedish Adoptees With Clinically Significant Tinnitus" and I don't think this is the kind of stuff that the tinnitus community of sufferers want research dollars being spent on, and in no way gets us closer to a cure. Actually, I don't think I saw one single paper on anything that gets us closer to a cure on the ESIT publications page.

I'm not accusing anyone of any type of impropriety, and these are all facts.

 

[Sironketchup]

Give it time guys, we might get the first results after 4-8 weeks.

I just thought about increasing neural plasticity during treatment with a cannabis antagonist (https://www.ncbi.nlm.nih.gov/pubmed/16596784) might be benefical?
But I found other articles saying THC increases neuroplasticity. So maybe getting high and then enjoying Lenire?
In the meantime let's give a fuck about tinnitus, that's the only thing we can do.
I'm pretty sure we will have a treatment for many of us in the next 5 years.

Cheers!

 

[Mandalay]

Hi guys,

I guess for the moment it's still time for speculation. The treatment is new, and nobody knows anything about the outcomes.

We will see...

@Hazel: Thanks a lot again for your great work!

@Allan1967: Did Neuromod offer you a phone call if you're feeling concerned?
Can I ask if you live in Europe or somewhere further away?

I wish you good luck with the device.

 

[Hazel]

I know you don't. I'm not insinuating that. I do think however that there is a relatively small group of people that seem to be steering the world of tinnitus research, namely the European School for Interdisciplinary Tinnitus Research (ESIT), which has as members, Berthold Langguth, David Stockdale who is chief executive of the BTA, and yourself.

I believe Berthold Langguth was not only the principle investigator for the TENT-A studies for Neuromod, but is also on the board of scientific advisers at Neuromod. Also, I found where Langguth, Markku, and Steve have collaborated on tinnitus research together.

I'm NOT insinuating that there is a conspiracy or that there are commercial or financial ties here at all, I'm just saying that considering how large the problem of tinnitus is, that the world of research seems to be very very small, and Berthold Langguth from the ESIT seems to be a common name that pops up over and over again. Also, the research that the ESIT has produced is really strange to me, such as topics like "Sex-Specific Association of Tinnitus with Suicide Attempts," and "Association of Genetic vs Environmental Factors in Swedish Adoptees With Clinically Significant Tinnitus" and I don't think this is the kind of stuff that the tinnitus community of sufferers want research dollars being spent on, and in no way gets us closer to a cure. Actually, I don't think I saw one single paper on anything that gets us closer to a cure on the ESIT publications page.

I'm not accusing anyone of any type of impropriety, and these are all facts.

Wow, that's entirely unrelated to the topic of this thread, and only tangentially related to your previous comment that I was responding to. That makes it a bit difficult to hold a conversation, but ok lemme respond:

You're right that the world of tinnitus research is small. I don't really know whether it's as interwoven you insinuate, but even if there is some kind of core group that holds most of the power or influence over research agendas, then it sure as hell does not include us!

You seem to think that we hold some kind of sway or influence that we truly don't. I mean, I wish we had the power - even a little bit - to dictate research agendas and to make research truly patient-driven. We certainly would want that - not for us, but for the patient community at large. But it's currently not the case.

Yes, we have collaborated with Berthold Langguth, but we will collaborate with any serious tinnitus researcher if they want to work with patients (many of them don't have the time or inclination), if we think the research topic is worthy, and if it seems we can somehow add value. I can give you a list of publications that we've co-authored on if you like.

I'm not going to comment on the quality of those ESIT papers, as I've not had the opportunity to study them. Our only direct involvement in one of the ESIT studies is this paper on heterogeneity - You know, the subtyping that everyone agrees is crucial to finding a cure? We supplied the survey data that the study is based on.

We also don't get any money from ESIT, apart from reimbursement of travel expenses to attend their meetings. Our role in the ESIT consortium is officially as patient representatives, but in practice it's quite limited and unfortunately we get no input into the research agenda; that's personally something I'd like to see done differently if we're part of any future consortiums. But it's not surprising since patient involvement in research is a relatively new phenomenon and will need time to develop.

You say you're stating facts, but they sound more like assumptions to me. And, as is your usual MO, you don't check the facts with us before making public statements about us. But I guess it's useful that I get the chance to clarify these misunderstandings publicly nonetheless.

So really, I don't know what you're getting at. This all started with you saying that Lenire is getting a suspicious amount of attention from us. I explained why this is the case, and that it doesn't have anything to do with any external parties. Then you go on to say we're suspiciously interwoven with certain third parties, but "hey, I'm not claiming any impropriety!"

It's clear, particularly given that you've made some wild accusations against us in the past, that you are in fact making some veiled insinuations against us, so why not just state explicitly what you believe to be true about us? Then at least we have a chance at rebuttal. I don't expect you to believe us, but it's important that we clarify our position to all our other members nonetheless.

If you wish to discuss this further, let's do it outside of this thread, because the thread would get too off-topic otherwise.

 

[ajc]

Can I ask if you live in Europe or somewhere further away?

@Allan1967 lives in the UK.