Lenire — Bimodal Stimulation Treatment by Neuromod

[Ivkopivko]

Flop in Italian means failure.

I changed my mind, I had always had fluctuations even before the treatment but I now start to be disappointed.

4 days ago I had the sounds of bells, wind and rumble in my head. Loud tinnitus in the right ear. I am tired of these fluctuations.

At the moment my tinnitus Is identical to that of how it was in September.

With all due respect, can you talk a little about your progress prior the deterioration a few days ago?

Did your noise just randomly switch from "almost gone" with moments of quiet or low tinnitus to loud? Have you done anything differently regarding the treatment, or have you attended some Metallica show or anything loud happened recently to you?

I believe there will be more of us curious.
Personally, I wish you that this is a transitional state and you will again achieve the well-deserved silence.

 

[Sironketchup]

Anyway, I'm still looking forward to my appointment.
Lenire is still the best treatment we have got at the moment.

After analysing the reports, the testimonials and studies I try to guess who can benefit the most from Lenire / bimodal stimulation.

(+)
- little hearing loss
- tinnitus is somatically modulated with jaw
- tinnitus is more like an electronic buzzing, not like an constant tone at one frequency
- slight hyperacusis / reactive tinnitus

(-)
- big hearing loss
- non somatic tinnitus
- tinnitus is more like a pure tone or other fancy stuff like diesel engine
- no hyperacusis

Remember this is just a guess, I have no clue.

I will tell you about my experience when I get my unit approx. end of February.

And trust me, I can tell if it's placebo. I'm a pharmacist.

Cheers!

 

[BBakkers]

@Sironketchup

I hope you are right and will have good results!

 

[BBakkers]

@Lucky97
Perhaps this is not a permanent setback and you will get back to the good levels you have experienced during the treatment!

Ah well, keep posting your experiences, good or bad. They give insight to all of us.

Best of luck!

 

[threefirefour]

When is the 2nd version of Neuromod coming out? The improved version. The 1st version of anything always has kinks in it.

According to a clinical trials page, it's supposed to be completely done and dusted by 2027, but it will probably be way earlier. According to that same page Susan Shore's first trial paper would have just been published instead of in 2018.

 

[Phat Tuna]

(+)
- little hearing loss
- tinnitus is somatically modulated with jaw
- tinnitus is more like an electronic buzzing, not like an constant tone at one frequency
- slight hyperacusis / reactive tinnitus

This describes mine very well. Except my hyperacusis is a little more than slight. And after onset of hyperacusis and reactive tinnitus, I now have multi-tones.

I was under the impression Lenire was not good for reactive tinnitus. Is this wrong?

 

[AfroSnowman]

I was under the impression Lenire was not good for reactive tinnitus. Is this wrong?

I don't think that there is any formal finding of a correlation between the two. The concern is that the sound portion of the therapy may negatively impact the user.

This is an anecdotal and quite possibly just coincidental but I believe this was a complaint most significantly forwarded by Allan1967.

 

[pinklights98]

Flop in Italian means failure.

I changed my mind, I had always had fluctuations even before the treatment but I now start to be disappointed.

4 days ago I had the sounds of bells, wind and rumble in my head. Loud tinnitus in the right ear. I am tired of these fluctuations.

At the moment my tinnitus Is identical to that of how it was in September.

Please remember that fluctuations are normal and to continue using the device despite this recent downturn. Also remember that Clare B had her tinnitus disappear then come back several times before it went away.

 

[JayBowson]

Much like @El BUZZ, ever since my appointment confirmation, confusingly, my tinnitus has been extremely well behaved. Almost as if it knows high noon is coming and is sneakily trying to dissuade me from spending my 2k.
I'd normally have about a 50/50 split of good/bad days. So having nearly a full week of good days is uncommon.

It's very hard to justify spending that much cash when things are quiet. But the pendulum will inevitably swing the other way and I've little doubt I'll pay for those 6 days soon enough.

 

[Ruse]

Anyway, I'm still looking forward to my appointment.
Lenire is still the best treatment we have got at the moment.

After analysing the reports, the testimonials and studies I try to guess who can benefit the most from Lenire / bimodal stimulation.

(+)
- little hearing loss
- tinnitus is somatically modulated with jaw
- tinnitus is more like an electronic buzzing, not like an constant tone at one frequency
- slight hyperacusis / reactive tinnitus

(-)
- big hearing loss
- non somatic tinnitus
- tinnitus is more like a pure tone or other fancy stuff like diesel engine
- no hyperacusis

Remember this is just a guess, I have no clue.

I will tell you about my experience when I get my unit approx. end of February.

And trust me, I can tell if it's placebo. I'm a pharmacist.

Cheers!

Interestingly I was reading through some of Clare B's posts and she mentioned that there was an assessment by a physiotherapist during the TENT-A2 trials to determine whether patients could modulate their tinnitus via movements of the neck / jaw etc.

This means that Neuromod will already know whether patients with somatic tinnitus will benefit more from the device.

 

[mark998]

Interestingly I was reading through some of Clare B's posts and she mentioned that there was an assessment by a physiotherapist during the TENT-A2 trials to determine whether patients could modulate their tinnitus via movements of the neck / jaw etc.

This means that Neuromod will already know whether patients with somatic tinnitus will benefit more from the device.

Would that include people who get a modulated sound (in my case, louder, by maybe 2x) by clenching their back teeth? When I see "movements of the neck/jaw", I get confused about whether or not that would include a clenching - and only a clenching. I can't change the sound by any other movements. Might that be something Neuromod was assessing and classifying as "somatic"?

 

[AfroSnowman]

I'll be in Dublin for my appointment on the 17th of January. Anyone else scheduled in and around this Friday?

 

[Sironketchup]

Would that include people who get a modulated sound (in my case, louder, by maybe 2x) by clenching their back teeth? When I see "movements of the neck/jaw", I get confused about whether or not that would include a clenching - and only a clenching. I can't change the sound by any other movements. Might that be something Neuromod was assessing and classifying as "somatic"?

Yes very much. Try moving your lower jaw forward and back. I bet that's going to change it as well.

 

[El BUZZ]

Maybe this has been asked a lot but does fluctuating tinnitus exclude you from getting Lenire?

Much like @El BUZZ, ever since my appointment confirmation, confusingly, my tinnitus has been extremely well behaved. Almost as if it knows high noon is coming and is sneakily trying to dissuade me from spending my 2k.
I'd normally have about a 50/50 split of good/bad days. So having nearly a full week of good days is uncommon.

It's very hard to justify spending that much cash when things are quiet. But the pendulum will inevitably swing the other way and I've little doubt I'll pay for those 6 days soon enough.

How loud are your bad days? I can always hear my tinnitus no matter the sounds around me, that's my baseline. Then, my bad days are like... REALLY LOUD.

 

[Sytex75]

Much like @El BUZZ, ever since my appointment confirmation, confusingly, my tinnitus has been extremely well behaved. Almost as if it knows high noon is coming and is sneakily trying to dissuade me from spending my 2k.
I'd normally have about a 50/50 split of good/bad days. So having nearly a full week of good days is uncommon.

It's very hard to justify spending that much cash when things are quiet. But the pendulum will inevitably swing the other way and I've little doubt I'll pay for those 6 days soon enough.

I too am experiencing the better days syndrome... now that my Lenire date is nearing, I actually had a night last week where i woke up in the middle of the night with complete silence, a first for me in 5 or so years. It only lasted a couple hours but I actually stayed up to relish it.

Perhaps it's the brain knowing we plan on doing something to try and upset the apple cart... or the noise cart in our lives... trying to appease us to reconsider the decision.

I'm committed... good or bad results await me but I'm going to stay positive either way.

 

[Ruse]

Would that include people who get a modulated sound (in my case, louder, by maybe 2x) by clenching their back teeth? When I see "movements of the neck/jaw", I get confused about whether or not that would include a clenching - and only a clenching. I can't change the sound by any other movements. Might that be something Neuromod was assessing and classifying as "somatic"?

Agreed with @Sironketchup above.

Also try jutting your jaw out as far as it will go or placing the palm of your hand on your forehead and pushing against it. These seem to work for me.

Maybe this has been asked a lot but does fluctuating tinnitus exclude you from getting Lenire?

No.

 

[mark998]

Yes very much. Try moving your lower jaw forward and back. I bet that's going to change it as well.

You are absolutely right. I just checked, and it does.

I am new to tinnitus. But from what I gather, in the context of Lenire and whether or not it might help, this may be a good thing...?

(It's strange, after modulating the sound, it stays modulated for a little while even after the clenching/jaw forward action is completed. That makes me feel like it might not be a good idea to do too often, it's as if it aggravates the conditio....)

 

[JayBowson]

Maybe this has been asked a lot but does fluctuating tinnitus exclude you from getting Lenire?

I'm pretty sure they don't exclude people who's tinnitus fluctuates. I haven't seen that mentioned and at least a few of the users currently going through treatment mention their tinnitus fluctuates.

How loud are your bad days? I can always hear my tinnitus no matter the sounds around me, that's my baseline. Then, my bad days are like... REALLY LOUD.

Sounds like yours is definitely worse than mine.

I'm quite mild. So I always get a good chuckle when people attribute my realistic/slightly hopeful stance towards Lenire as "needing hopium" or some other nonsense. If Lenire fails for me I won't be losing my will to live.

My good days are a gentle hiss in the back of my head at about 1.5/10 so easily ignorable with any background noise at all.
My bad days are a kind of electrical eeeeeesssshheee in my left ear at about a 3/10. While it isn't very loud it's also not maskable. I can kinda hear it alongside everything as though it comes in on a different wavelength or fights to stay on top of other noises. So it's irritating but not horrendous. I also commonly get fleeting tinnitus which does with some regularity happen in the middle of the night and startles me awake. Which can be quite distressing.

I'm encouraged that a common effect of Lenire seems to be a spike/fleeting tinnitus killer. If that was all it did for me it would be worth it IMO.

 

[ChrisBoyMonkey]

I'm pretty sure they don't exclude people who's tinnitus fluctuates. I haven't seen that mentioned and at least a few of the users currently going through treatment mention their tinnitus fluctuates.

Sounds like yours is definitely worse than mine.

I'm quite mild. So I always get a good chuckle when people attribute my realistic/slightly hopeful stance towards Lenire as "needing hopium" or some other nonsense. If Lenire fails for me I won't be losing my will to live.

My good days are a gentle hiss in the back of my head at about 1.5/10 so easily ignorable with any background noise at all.
My bad days are a kind of electrical eeeeeesssshheee in my left ear at about a 3/10. While it isn't very loud it's also not maskable. I can kinda hear it alongside everything as though it comes in on a different wavelength or fights to stay on top of other noises. So it's irritating but not horrendous. I also commonly get fleeting tinnitus which does with some regularity happen in the middle of the night and startles me awake. Which can be quite distressing.

I'm encouraged that a common effect of Lenire seems to be a spike/fleeting tinnitus killer. If that was all it did for me it would be worth it IMO.

I think some of the Lenire users mentioned it has helped them with the fleeting tinnitus too, just don't remember which ones.

 

[all to gain]

I wonder what the average tinnitus severity is (using a scale of 1-10) of those currently using Lenire? I've seen some talking about their tinnitus being quite mild and just wondered if that was the norm.

 

[PeterPan]

I wonder what the average tinnitus severity is (using a scale of 1-10) of those currently using Lenire? I've seen some talking about their tinnitus being quite mild and just wondered if that was the norm.

I can answer this question and will post a chart sourced from the Lenire User Experience Survey when I get home tonight (in about 11 hours).

We have severity information in terms of TFI and if I recall correctly, the average is about 49, which is quite high.

 

[PeterPan]

I too am experiencing the better days syndrome... now that my Lenire date is nearing, I actually had a night last week where i woke up in the middle of the night with complete silence, a first for me in 5 or so years. It only lasted a couple hours but I actually stayed up to relish it.

I suspect it is due to your stress levels reducing and you feeling less stressed because you feel that you may have a solution/reduction to your tinnitus soon.

I had a similar result when I started using earmuffs on the bus to work. Had a big reduction, but then went back to baseline after a week or so.

 

[Bratlander]

Apologies if this is a dumb question, but is the intention of Lenire to offer ongoing temporary relief or a permanent improvement? Or to be confirmed?

 

[Ruse]

Apologies if this is a dumb question, but is the intention of Lenire to offer ongoing temporary relief or a permanent improvement? Or to be confirmed?

Permanent.

 

[GlennS]

Permanent.

Be advised that I got into a tiff with someone not that long ago who says Neuromod never promised the results were permanent. Promised, maybe not. But the trial results suggested permanence due to the long-term followup. In my case if I had to keep using this indefinitely for the given result, I would. Permanence is a factor in determining whether it's worth it but not a showstopper.

The context of the tiff was the discontinuity between "disimprovement" being temporary and improvement being permanent. I thought it being asymmetrical like this felt strange and I still do.

 

[MRItechssuck]

IMO the reality will be, IF this device works for a small percentage of people... it won't be permanent. The underlying damage still exists... the brain damage still exists... you may trick the brain for a while but the damage is still there.

 

[Sytex75]

I suspect it is due to your stress levels reducing and you feeling less stressed because you feel that you may have a solution/reduction to your tinnitus soon.

I had a similar result when I started using earmuffs on the bus to work. Had a big reduction, but then went back to baseline after a week or so.

I believe that theory wholeheartedly. A little bit of self-induced placebo'ing...

 

[Jefferson Nunn]

Any ideas if Lenire will come to the US? This looks like it may help at least until something like FX-322 or whatever hits the market.

 

[AfroSnowman]

Any ideas if Lenire will come to the US? This looks like it may help at least until something like FX-322 or whatever hits the market.

They are just waiting on FDA approval so it could be fast or it could take a while.

 

[mark998]

IMO the reality will be, IF this device works for a small percentage of people... it won't be permanent. The underlying damage still exists... the brain damage still exists... you may trick the brain for a while but the damage is still there.

In my understanding, although noise induced tinnitus (and perhaps some other types?) is caused by damage, the sound of tinnitus is in a sense the brain being tricked into turning up the gain to account for the missing sound. So it's not precisely brain damage, but damage in the cochlea that influences the brain into a certain response. So, if the brain can be tricked into this response, why couldn't it be tricked out of it?