Lenire — Bimodal Stimulation Treatment by Neuromod

[UKBloke]

Please notify me if I am misinterpreting this and should stand corrected.

I don't think you're misinterpreting the account at all. Between visits 3 and 4, tinnitus volume increased by about 2 decibels (but Neuromod states that a temporary increase in tinnitus volume is normal), and in conclusion, pitch and tone changed more than actual volume.

To be honest, this doesn't strike me as a glowing testimonial, and by itself the concluding statement is a bit confusing but I don't feel that's down to @Drone Draper. I feel it's more down to Neuromod whose device appears to be perplexing even its own users.

I've said this a few times and will probably say it again, but I think that without the hard data, i.e. audiogram, MML, TLM and finally THI, it's going to be very difficult to draw any meaningful conclusion from anecdotal subjective experiences.

@PeterPan's data should come online next year sometime and I feel that it will be this more than anything that will give our community its first, coldest, hardest objective look at what exactly it is that Lenire can do.

 

[Ruse]

I tend to disagree, tone and pitch matters if it comes to level of annoyance, at least for me. I have 2 tinnitus sounds, both are of the same volume, low pitch hum in left ear and head cricket. I couldn't care less about the hum, while the cricket annoys me as hell. If the cricket was gone and hum stayed, and my tinnitus volume remained the same, but qualify of life would increase dramatically.

Agreed.

The tone in my right ear is actually the loudest but is easily maskable so bothers me less than the much higher pitched and quieter tone in my left ear which I hear most of the time.

Even a slightly reduction in pitch or volume would make a huge difference for me hence I'm still confident about the treatment.

 

[Martin69]

Usually I am a very skeptical person. And I do not expect miracles from Lenire.
But we need to consider it is a new treatment for tinnitus.

I am sure that Neuromod and others are learning from current patients and could (and hopefully will) improve the device. If the device is changing something, this is better than it is doing nothing.

Of course it is not the first device that is working with sound and others have completely failed.

I know that the device will come to Germany next year. They will charge at least 3000€. Even though I have the money, I don't know if it will be worth it to do the treatment. Probably not and better waiting what results the device from Dr. Susan Shore will bring.

 

[DaveFromChicago]

To Mentos:

From that standpoint you are surely correct.

A high pitched dentist drill sound cannot be masked by my Widex Hearing Aids.
But a white/violet noise sound can be (and it blends in at night with the sound emitted by a running fan, and although the two combined sounds intensify the sensation, sleep is still obtainable).

The question is: Is this realistically the extent of the improvement to be expected and available from Lenire?

 

[threefirefour]

Usually I am a very skeptical person. And I do not expect miracles from Lenire.
But we need to consider it is a new treatment for tinnitus.

I am sure that Neuromod and others are learning from current patients and could (and hopefully will) improve the device. If the device is changing something, this is better than it is doing nothing.

Of course it is not the first device that is working with sound and others have completely failed.

I know that the device will come to Germany next year. They will charge at least 3000€. Even though I have the money, I don't know if it will be worth it to do the treatment. Probably not and better waiting what results the device from Dr. Susan Shore will bring.

Pretty much exactly. It's the first actual tinnitus treatment, so of course it's not going to be perfect. It created a model that will be refined until it's really good, and put the foot in the door for other similar treatments to go to market. Susan Shore and Sonic Labs will be able to get FDA approval very quickly once this passes the FDA.

 

[raymilf]

They will charge at least 3000€.

Where did you hear that?

 

[Drone Draper]

@Drone Draper
I have a question, since the tone changed, does this make it easier to mask or at least ignore in day to day life like at work, at the store, driving, etc.?

Yes. I wouldn't apply for a job in a library, but in most day-to-day situations, it's more easily masked. I was in a 2 day training seminar last month, and thanks to the ancient heating system being switched, I was struggling to hear my tinnitus.

@Drone Draper that was a wonderfully written and well-informed post in the Lenire User Experiences thread.

Thank you for taking the time to put it out there. I hope things go well.

Thanks. I know from LinkedIn that they are looking to partner with audiologists in the UK, so hopefully you can access Lenire with ease, if you want to.

I am still utterly mystified by such a comment.

Think about it this way: what would be more annoying and intrusive over time - The Flight of the Bumblebee on repeat OR the constant sound of a soft fan? I would love to tell you that I had a massive decrease of 30 dB of my tinnitus, but I want to be honest. I consider this to be an improvement, but I still have tinnitus.

I don't recall Neuromod making truly strong claims, but they have said that a lot of users have had a "significant improvement". What that means in an academic setting can be different to what it means to us as laypersons. I want anyone who parts with their money to go in with their eyes wide open and not expect too much. By Neuromod's standards, my improvement may be seen as statistically significant, but to some it's probably underwhelming.

Thank you for the review Drone Draper. Maybe we need a bass line to go with the guitar tabs? I play by ear too.

Haha, sure. I will see if I can post a recording of the actual music and upload to the user thread.

Another testimonial, another depressing moment for me... only my personal opinion.

I'm sorry to hear that, but hopefully you will appreciate an honest review over a shill. There are some more positive testimonials, hopefully you could be a better responder. I want to everyone dealing with Neuromod to be as clear as possible with what they can expect. €2,500 plus flights and accommodation is a lot of money to some.

I tend to disagree, tone and pitch matters if it comes to level of annoyance, at least for me. I have 2 tinnitus sounds, both are of the same volume, low pitch hum in left ear and head cricket. I couldn't care less about the hum, while the cricket annoys me as hell. If the cricket was gone and hum stayed, and my tinnitus volume remained the same, but qualify of life would increase dramatically.

Exactly. I've had various sports injuries over the years. On Good Friday this year, I popped a rib deadlifting. It was as fun as it sounds. I've also strained my lower back deadlifting. I will take a strained lower back over a popped rib any day. Both are injuries. One is significantly worse.

@Drone Draper,
Your post was very informative and helpful. Did Neuromod make any comment about wearing the in-ear maskers (on whether they affect treatment, results, etc.)? Is it okay to wear the maskers during the 12 week treatment/and after?

They were surprised I'd been given hearing aids, given my "normal" audiogram, though masking can sometimes help even people with a "normal" audiogram. They said I could continue use them if I wanted to, but obviously not using masking while using Lenire.

 

[jmasterj]

@Drone Draper, I am just curious if your tinnitus is somatic?

 

[Drone Draper]

Is that when you can basically modulate it by moving your jaw? If so, kind of.

 

[jmasterj]

Is that when you can basically modulate it by moving your jaw? If so, kind of.

Yes, basically if you can modulate it by neck or jaw movements or pressing on certain areas on your head or face. I was just curious how Lenire worked for somatic tinnitus. There really hasn't been much conversation if it works better for somatic or non-somatic tinnitus. Mine is very somatic, but I will still go through the treatment.

As of right now, Susan Shore's device is only for somatic tinnitus.

Thanks for the answer.

 

[Tybs]

About Drone Draper's report:

His comment about how his tinnitus "changed more in pitch and tone than in actual volume" replicates the numerous commentaries from Lenire's posted testimonials on YouTube.
I am still utterly mystified by such a comment.

It is akin to stating that an area of pain is changed in character but not less intense.

Was the pitch and tone different, and although just as loud, nonetheless a sound that was not as grating?

I don't particularly care if the changed sound approximated the Adagio in Beethoven's Spring Sonata; it would still be devastatingly intrusive if I knew it was constant and unalterable.

His caveat about not expecting major reductions, i.e. "some improvement but nothing miraculous", only makes me all the more confused when such "improvement" will not result in a really perceptible decrease in volume.

I played this shell game with myself once before with Desyncra.

Please notify me if I am misinterpreting this and should stand corrected.
I want as much as anyone else to develop a confidence about this.

I've experienced about twelve sounds so far, most of them roughly the same volume.

With 10 of them, I hardly cared about having them around: I got used to them within a week and they did not bother me afterwards.

However, the other two are/were wáy more intrusive. Luckily one of them seems to have vanished/suppressed, at least I haven't noticed it in weeks. The other one is actually my first sound: it is a tone that increases/decreases in volume every second. Up to this point, I never truly got used to this one. The continuous fluctuation keeps messing with my attention span whenever I hear it.

Luckily, another sound sort of came to my rescue eventually: over a few weeks time, its volume slowly increased up to the point that it exceeds my first tone. This new sound is a simple hiss: though its always there during the day, I rarely notice it, unless I have a really bad day. Yet it masks the other sound, and it feels much better than that up/down attention seeking tonal intruder.

Trust me, pitch and tone definitely matter.

 

[Ruse]

Yes, basically if you can modulate it by neck or jaw movements or pressing on certain areas on your head or face. I was just curious how Lenire worked for somatic tinnitus. There really hasn't been much conversation if it works better for somatic or non-somatic tinnitus. Mine is very somatic, but I will still go through the treatment.

As of right now, Susan Shore's device is only for somatic tinnitus.

Thanks for the answer.

I am also intrigued by this as I believe that @Redknight also had very somatic tinnitus.

I can go from making certain tones twice as loud to almost silent by making certain neck and jaw movements.

 

[LostOutWest]

Does anyone know if people on the current Lenire waitlist will be offered spots in the soon-to-be-open German Clinic (more relevant for travel patients), or if Germany will have their own, separate queue of patients?

Would hope that they'd balance supply of appointments and demand from patients across the two, and avoid folks signing up for both sites.

 

[Drone Draper]

Yes, basically if you can modulate it by neck or jaw movements or pressing on certain areas on your head or face. I was just curious how Lenire worked for somatic tinnitus. There really hasn't been much conversation if it works better for somatic or non-somatic tinnitus. Mine is very somatic, but I will still go through the treatment.

Ah, right. Not really. What seems to affect my tinnitus is noise exposure, flights and exercise. The latter typically affects it in a good way, my tinnitus tends to be at its most stable upon waking or post-exercise. I've not had anything else, like caffeine or alcohol, have an impact.

 

[Mentos]

@Krolo is your cricket tinnitus in the ear or in the head? I have cricket tinnitus located in the back of my head, it developed after metal concert few years ago. Your experience gives me hope Lenire may indeed help me.

 

[Sironketchup]

@Mentos are your crickets somatic?

I have an electric wave in my head, I can feel it sometimes. When it's weaker it gets like crickets.
And it's very jaw somatic. I'm just eating gummybears and I can hear it squeak in my head.

Is there going to be statistics what kinds of tinnitus is best helped by Lenire?

I think this type is quite common, and might (hopefully) be highly connected to the cochlear nucleus.

 

[pinklights98]

@Mentos are your crickets somatic?

I think this type is quite common, and might (hopefully) be highly connected to the cochlear nucleus.

Mine is very somatic, I will ask them this at my consult next month.

 

[Krolo]

@Mentos @Sironketchup
The cricket part of the sound is mainly in my left ear but can travel to head and right ear from time to time.

Mind you that at the worst time I had almost infinite amount of sounds in my head and through different steps + time it seems that Lenire might put another dent into it.

 

[erik]

I can go from making certain tones twice as loud to almost silent by making certain neck and jaw movements.

That is not that unusual. I think many tinnitus people have it this way.

 

[Martin69]

Where did you hear that?

From the clinic. I cannot give more details at the moment. It is all "under construction" and no concrete plans (starting date for example) are known. Once I know more, I will share.

BTW, people here wrote already that someone from Germany is shadowing the assessments. So I guess, Germany will be the next country where Lenire will be available.

 

[UKBloke]

That is not that unusual. I think many tinnitus people have it this way.

Mine included. The regular tones (louder one in left ear), I can double in volume just by clenching my jaw.

 

[Allan1967]

I'm back in Dublin next week. I have not had a great run at this. In fact every time I try Lenire my tinnitus seems to get worse... All I can say is I'm in a worse position that I ever was when disaster struck this time last year. I've got so much going on in my ears and head now I don't know where to stop or start.

I have a constant low pitched hum which I'm sure is blood pressure related in my right ear, a high pitched whine, periodically I get bells and now I have wine glass rim sounding hum which has came on and stayed on since last Friday which is starting to freak me out.

My tinnitus is just constantly changing and totally unlike my original tinnitus. I don't even know why I'm bothering to go tbh.

 

[friend74]

Usually I am a very skeptical person. And I do not expect miracles from Lenire.
But we need to consider it is a new treatment for tinnitus.

I am sure that Neuromod and others are learning from current patients and could (and hopefully will) improve the device. If the device is changing something, this is better than it is doing nothing.

Of course it is not the first device that is working with sound and others have completely failed.

I know that the device will come to Germany next year. They will charge at least 3000€. Even though I have the money, I don't know if it will be worth it to do the treatment. Probably not and better waiting what results the device from Dr. Susan Shore will bring.

Lenire will be more expensive in Germany than in Ireland?

 

[david c]

I'm back in Dublin next week. I have not had a great run at this. In fact every time I try Lenire my tinnitus seems to get worse... All I can say is I'm in a worse position that I ever was when disaster struck this time last year. I've got so much going on in my ears and head now I don't know where to stop or start.

I have a constant low pitched hum which I'm sure is blood pressure related in my right ear, a high pitched whine, periodically I get bells and now I have wine glass rim sounding hum which has came on and stayed on since last Friday which is starting to freak me out.

My tinnitus is just constantly changing and totally unlike my original tinnitus. I don't even know why I'm bothering to go tbh.

Really sorry to hear that Allan. Looking through the User Experiences thread you are far from being the only person whose tinnitus has been worsened by Lenire.

I think I would avoid these kind of in-ear sound therapies as it seems they are just making things worse for you. Minimising loud noise exposure where possible and maybe having some relaxing background noises at a low level will be the best way forward.

 

[Jan64]

I know that the device will come to Germany next year. They will charge at least 3000€. .

Why will Neuromod charge more in Germany? What is the motivation for that? Both (Ireland and Germany) are 'euro-countries'...

 

[MRItechssuck]

Mine included. The regular tones (louder one in left ear), I can double in volume just by clenching my jaw.

And that is how I know I'm having a bad day, when clenching my jaw matches the loudness of the tinnitus... which I've had a month of bad days. Oh well.

 

[threefirefour]

Really sorry to hear that Allan. Looking through the User Experiences thread you are far from being the only person whose tinnitus has been worsened by Lenire.

I think I would avoid these kind of in-ear sound therapies as it seems they are just making things worse for you. Minimising loud noise exposure where possible and maybe having some relaxing background noises at a low level will be the best way forward.

Yeah there were two others, but so far his is the only permanent increase.

 

[JohnK]

So we're all waiting the long haul for Dr. Shore's device with baited breath now.

Speak for yourself. I'm waiting for the Lenire appointment. But please do cancel yours so I can get to it sooner.

 

[Martin69]

Lenire will be more expensive in Germany than in Ireland?

@Jan64

They said that the Lenire device will be 1900 €, which has to be paid directly to Lenire via credit card.

But they will do a complete diagnostic test before they start the treatment and they said that this will cost approx. 1000€.

This is for the first visit.

I can only say: This is Germany again. They charge whatever they can and take as much as they can from desperate people. This is all I know. Do not ask for any more details, because I do not know more.

 

[Mentos]

@Jan64

They said that the Lenire device will be 1900 €, which has to be paid directly to Lenire via credit card.

But they will do a complete diagnostic test before they start the treatment and they said that this will cost approx. 1000€.

This is for the first visit.

I can only say: This is Germany again. They charge whatever they can and take as much as they can from desperate people. This is all I know. Do not ask for any more details, because I do not know more.

I guess they are bound by agreement with Neuromod to charge for the device itself no more than 1900 €, but they are free to charge whatever they wish for initial examinations.