Lenire — Bimodal Stimulation Treatment by Neuromod

[ChrisBoyMonkey]

Chris, I understand that you're suffering 100%. Tinnitus is a living hell of a condition that people who don't have will never be able to comprehend. And it's a shame that with all our science and technology we can't get a sound out of our head. But I believe in the 2020s we will get fixed up one way or another. I am optimistic about the near future.

But I have already made it clear from the post you quoted, I'm going to sit out 2 months/8 weeks from this point, you don't have to block me, I'm going to let it sit for a few months. My last real skeptical post before today was on October 7-8th, you can go in my history and look. I'm not going to stick around here and say if it does or doesn't work. If you want to try it, it's fine, I'm not going to try and stop you at all. I'm all for people going ahead and trying the device. Someone always has to be the first when it comes to these new technologies.

When 2020 gets here, I'll pop in, give my take on the future data, and perhaps decide to cave in and buy it if it works for the slight majority of users on here.

Chris, what I care about is if it works for us or not, that's my position. I'm all for optimism and positive thinking. But no amount of wishing on our end makes something true, reality can be a real jerk sometimes. Perhaps if we constructively critique Lenire in its shortfalls, Neuromod will strive to make continuous improvements. Maybe it'll get to a point where the technology can treat "every" sub-type of tinnitus. But "I personally" don't think today is that day.

Chris, I understand that you're suffering 100%. Tinnitus is a living hell of a condition that people who don't have will never be able to comprehend. And it's a shame that with all our science and technology we can't get a sound out of our head. But I believe in the 2020s we will get fixed up one way or another. I am optimistic about the near future.

But I have already made it clear from the post you quoted, I'm going to sit out 2 months/8 weeks from this point, you don't have to block me, I'm going to let it sit for a few months. My last real skeptical post before today was on October 7-8th, you can go in my history and look. I'm not going to stick around here and say if it does or doesn't work. If you want to try it, it's fine, I'm not going to try and stop you at all. I'm all for people going ahead and trying the device. Someone always has to be the first when it comes to these new technologies.

When 2020 gets here, I'll pop in, give my take on the future data, and perhaps decide to cave in and buy it if it works for the slight majority of users on here.

Chris, what I care about is if it works for us or not, that's my position. I'm all for optimism and positive thinking. But no amount of wishing on our end makes something true, reality can be a real jerk sometimes. Perhaps if we constructively critique Lenire in its shortfalls, Neuromod will strive to make continuous improvements. Maybe it'll get to a point where the technology can treat "every" sub-type of tinnitus. But "I personally" don't think today is that day.

Chris, I understand that you're suffering 100%. Tinnitus is a living hell of a condition that people who don't have will never be able to comprehend. And it's a shame that with all our science and technology we can't get a sound out of our head. But I believe in the 2020s we will get fixed up one way or another. I am optimistic about the near future.

But I have already made it clear from the post you quoted, I'm going to sit out 2 months/8 weeks from this point, you don't have to block me, I'm going to let it sit for a few months. My last real skeptical post before today was on October 7-8th, you can go in my history and look. I'm not going to stick around here and say if it does or doesn't work. If you want to try it, it's fine, I'm not going to try and stop you at all. I'm all for people going ahead and trying the device. Someone always has to be the first when it comes to these new technologies.

When 2020 gets here, I'll pop in, give my take on the future data, and perhaps decide to cave in and buy it if it works for the slight majority of users on here.

Chris, what I care about is if it works for us or not, that's my position. I'm all for optimism and positive thinking. But no amount of wishing on our end makes something true, reality can be a real jerk sometimes. Perhaps if we constructively critique Lenire in its shortfalls, Neuromod will strive to make continuous improvements. Maybe it'll get to a point where the technology can treat "every" sub-type of tinnitus. But "I personally" don't think today is that day.

Heinrich, nice of you to write this but let me make this clear as I told Glenn.

My arguments is not "I'm suffering so hard I need something to believe in".

My argument is "even a small reduction is worth the plight".

This may not true for everyone like you or Glenn, but we are out there. In my case I checked and only a little increase in volume is what made the difference between hearing it only in quiet places and everywhere. The way this disease is, this is probably true for a lot of people, and what we're hoping for from the treatment.

The reviews themselves, the repeated confidence and overall feedback the users are reporting from the Neuromod staff to me look worthy of pursuing this.

As for 2020, it could be it in a sense as Neuromod expands as it is the first real treatment (which automatically makes it the best until something else is out) but as for us really getting big reductions probably relies more on whether the Michigan device is released next year.

 

[Ruse]

Being objective? Get real with yourself. You got your hopes up way too high from the beginning, then you turned into that little Charlie Brown meme yourself. That's all emotion: Let down. End of story, and your meme only reinforces this.

Since I really have so summarize my argument for you because obviously you didn't get it on its own, let me spell it out for you:

"The difference that made my tinnitus go from mild to severe was actually small in volume."

That small difference, something Lenire can offer, is all I hope for from the device. From the reports we've been getting, it's a reasonable expectation.

Totally agree with this.

THI scores were only reduced by around a third on average, let's not forget. Less for more severe sufferers.

It was never going to be a case of seeing floods of users reporting life changing experiences after 4-6 weeks.

I think we are now seeing the effects from people setting the bar too high and getting frustrated that this isn't some miracle cure.

Unfortunately said user appears to be taking that frustration out on anyone experiencing positive changes.

 

[GlennS]

That small difference, something Lenire can offer, is all I hope for from the device. From the reports we've been getting, it's a reasonable expectation.

OR, it can make it worse, like with Allan. How would you fancy that?

 

[ChrisBoyMonkey]

OR, it can make it worse, like with Allan. How would you fancy that?

He got hit with a fire alarm! And his tinnitus is very reactive to top it off! That could happen to any of us with or without the device, but the reactivity probably didn't help.

 

[GlennS]

He got hit with a fire alarm! And his tinnitus is very reactive to top it off! That could happen to any of us with or without the device, but the reactivity probably didn't help.

He isn't the only one who experienced worsening. It's even right there in the manual. But I get it. You've rationalized the negatives in order to justify your current stance. Just stop insisting that this is the most reasonable assessment or, worse, the only acceptable attitude to have in order to be allowed to participate in this thread.

 

[JayBowson]

He isn't the only one who experienced worsening. It's even right there in the manual. But I get it. You've rationalized the negatives in order to justify your current stance. Just stop insisting that this is the most reasonable assessment or, worse, the only acceptable attitude to have in order to be allowed to participate in this thread.

Don't pretend you and your skeptical cohort weren't doing the exact same (in the other direction) with @Redknight and some of the newer sufferers who have seen good results.

Double standards if ever I've seen it.

 

[ChrisBoyMonkey]

He isn't the only one who experienced worsening. It's even right there in the manual. But I get it. You've rationalized the negatives in order to justify your current stance. Just stop insisting that this is the most reasonable assessment or, worse, the only acceptable attitude to have in order to be allowed to participate in this thread.

Yes the worsenings are expected and also should resolve for most (then improve) for most, as they have.

What I'm telling you is that you keep saying the same thing, we've heard you out, you can stop saying it now.

 

[EDDTEKK]

What I don't understand is the fact that some people's tinnitus first gets worse before it improves with Lenire?

Is there any explanation for it? Perhaps as a layman I don't understand it, I don't know.

 

[Bartoli]

What I don't understand is the fact that some people's tinnitus first gets worse before it improves with Lenire

I got the feeling watching the Q&A video that not even Dr. Ross O'Neill could fathom an explanation for it. It sounded more like an inconvenient observation they made. But in my opinion he never tried to hide or downplay the worsenings and he acknowledged their existence. Worsenings should be temporary.

I don't know if the method of delivery (headphones) has anything to do with the worsenings? I haven't worn them in a long time, save for hearing tests, but quite a lot of people on this forum seem to think headphones aggravates their tinnitus.

 

[El BUZZ]

What I don't understand is the fact that some people's tinnitus first gets worse before it improves with Lenire?

Is there any explanation for it? Perhaps as a layman I don't understand it, I don't know.

Maybe after such a worsening any tinnitus reduction tastes like an overall improvement... If my tinnitus got worse, in such a case I'd feel blessed getting back to my hellish baseline.

 

[pochito]

So it's that old? They told me they had a 50% success rate in reduction of the tinnitus. I doubt it, even if it did work for me, but the effect lasted only for a couple of weeks...

I did it in 2015, they by the way didn't tell me they had a 50% success rate and just gave me a prescription for some Rivotril to sleep better... the usual stuff with doctors when they don't know how to treat a disease.

As you can see in the picture they use a TENS unit for the electrical stimulation and just send an audio signal like a simple sine wave tone through headphones.

There is no synchronisation or timing between both stimulations. And the electrical stimulation is only around the ear which doesn't trigger anything else than your face muscles.

I even bought a TENS unit after the treatment thinking I could use it at home to have longer sessions and try with ACRN but didn't work better... some residual inhibition at best.

The place I went to is the best place you can go to in Paris for tinnitus, I was there a few months ago for a checkup and asked if they knew about Lenire, Dr. Susan Shore or any kind of neuromodulation device and they had no clue whatsoever.

That s the way they treat tinnitus right now.

 

[F-u-T]

Maybe after such a worsening any tinnitus reduction tastes like an overall improvement... If my tinnitus got worse, in such a case I'd feel blessed getting back to my hellish baseline.

Good point.

 

[Liz Windsor]

Just want to say how grateful I am that you've come back to post an update and hope others who've tried Lenire do the same.

Hello. I do understand that some members on Tinnitus Talk are interested in any benefits, or otherwise, Lenire users have had whilst using Lenire and possibly think we are not being very helpful in giving more information. Probably I would feel the same myself.

I just want to say that as and when I have anything to comment on that might prove useful and informative I will definitely post it in the Lenire User Experiences & Reviews thread. I have been doing that from the beginning.

However, my experience so far (ten weeks tomorrow), to summarise, is that after the first week of use I noticed an improvement which gave me a lessening of tone and volume from a screeching drill down to a softer 'hiss'. This was very encouraging. This carried on for about two weeks and then this benefit seemed to stop happening. I then had my first follow up appointment in Dublin. Due to a perceived (by me) increase in the volume at that point the Audiologist suggested that I didn't wear my hearing aids for a period of time both before and after my sessions so as not to potentially overstimulate my hearing. I decided to stop using them altogether so that I was in no doubt where any changes were coming from and it would be less confusing.

I've now been without them for nearly four weeks. My hearing isn't bad and I can manage without them, I just wore them to take the 'edge' of the tinnitus. It's been pretty uncomfortable managing without them but I feel it's worth persevering with this. The extra level of 'volume' I was experiencing has now settled down.

I go back in a couple of weeks for my next review appointment and will put an update on the Lenire User Experiences & Reviews thread.

Things don't change massively day by day or week by week, it's a long term approach so putting updates on too frequently I think can be misleading, as it may be completely different the next day.

There is more of a detailed description in the Lenire User Experiences & Reviews thread for anyone that wants to read it!

I hope this is of some help.
Liz

 

[AfroSnowman]

The extra level of 'volume' I was experiencing has now settled down.

Liz,

Thanks so much for taking the time to keep us informed. It has been a bit if a rollercoaster waiting for actual reviews while filtering out all the venting and hypothesizing.

I understand changes in tinnitus can be subtle and the day to day changes are a mix of our actual sensory experience as well as our emotional experience of that input, making it difficult to determine if you are actually having an improvement or not, but...

The question I have for you (and anyone else who is well into the program) is, in your opinion, has Lenire made your tinnitus better in any substantive way?

Would you recommend it to a friend suffering from tinnitus? I'm hoping to elicit a yes or no.

 

[ruud1boy]

The question I have for you (and anyone else who is well into the program) is, in your opinion, has Lenire made your tinnitus better in any substantive way?
Would you recommend it to a friend suffering from tinnitus? I'm hoping to elicit a yes or no.

Has Lenire made my tinnitus better? - No... not yet anyway.

Would I recommend it? - Yes.

You might have a greater response to the treatment than I've had.

 

[Mandalay]

@Liz Windsor,

Thank you so much for sharing your experience. Well, I am not a native English speaker, so maybe that's why I can't catch the meaning of your writing completely. So I would like to ask you:

- Are you saying it is too early to make a statement like: Lenire works for me, or Lenire doesn't work for me?

- Are you thinking of using Lenire for longer than 12 weeks?

- Are you feeling or perceiving that Lenire brings you a benefit in the long run? (you had a worsening in between).

 

[Liz Windsor]

Liz,

Thanks so much for taking the time to keep us informed. It has been a bit if a rollercoaster waiting for actual reviews while filtering out all the venting and hypothesizing.

I understand changes in tinnitus can be subtle and the day to day changes are a mix of our actual sensory experience as well as our emotional experience of that input, making it difficult to determine if you are actually having an improvement or not, but...

The question I have for you (and anyone else who is well into the program) is, in your opinion, has Lenire made your tinnitus better in any substantive way?

Would you recommend it to a friend suffering from tinnitus? I'm hoping to elicit a yes or no.

I can understand you wanting a yes or no. If you were a friend I would say it's still early days... not even through the 12 week treatment period but I am optimistic for improvements in the future. I think my hearing aid situation may have complicated my particular experience.

However, I have complete faith in the Neuromod team. I am not sorry I've gone down this route and would do it again. I think we just have to persevere, be patient and not expect a miracle!

I'll post again after 12 November on the Lenire User Experiences & Reviews thread to keep all the feedback in one place.

Kind regards,
Liz

 

[GlennS]

Well, here's my audiogram. The left ear is with the X. Definitely worse than the right and with that dip on 6 kHz but according to the person I saw she classifies this as "good" and not nearly bad enough to start considering hearing aids. That kind of surprised me, as well as the low frequency dropoff. I've never thought I had that problem.

So the audiogram doesn't rule me out from using Lenire. I'll wait and see how things evolve between now and when it shows up in the US.

 

[ChrisBoyMonkey]

Well, here's my audiogram. The left ear is with the X. Definitely worse than the right and with that dip on 6 kHz but according to the person I saw she classifies this as "good" and not nearly bad enough to start considering hearing aids. That kind of surprised me, as well as the low frequency dropoff. I've never thought I had that problem.

So the audiogram doesn't rule me out from using Lenire. I'll wait and see how things evolve between now and when it shows up in the US.

View attachment 32585

Maybe it's good based on age? Either way, it looks you might be able to give FX-322 a shot if they're recruiting near you.

 

[Eric75007]

The place I went to is the best place you can go to in Paris for tinnitus, I was there a few months ago for a checkup and asked if they knew about Lenire, Dr. Susan Shore or any kind of neuromodulation device and they had no clue whatsoever.

Yeah, that was my impression too. I don't know where their excellent reputation is coming from, but certainly not from tinnitus treatment.

I'm now consulting Dr. Timsit who gave me a drug protocol based on Neurontin (Gabapentin) and other drugs usually used to treat epilepsy! Still underway, no effect on my tinnitus yet.

 

[AfroSnowman]

Thanks @ruud1boy and @Liz Windsor! Great and useful info.

I'd love to hear updates from these that found some positive impact too:
@Redknight, @Mike T, @dfl.

Same question I was asking above: In your opinion, has Lenire made your tinnitus better in any substantive way?

Would you recommend it to a friend suffering from tinnitus? I'm hoping to elicit a yes or no.

Thanks.

 

[Watasha]

It's premature to think it's impossible, but reasonable to think it's unrealistic. Unrealistic = not easy to solve, and there should be no debate on that point.

Who wrote those rules on debating?

I still think it's premature to think it's unrealistic. It's unrealistic to expect a cure until the physiological mechanism is understood sure, but to write it off so early in the days of neuroscience, we're not there yet. I'm sure at one point it was "unrealistic" to think about putting a man on the moon...

Let's just call it what it is. It has thus far been a difficult area of study. We are learning exponentially more each year. Neuroscience itself is in its infancy. It is unrealistic to expect a total cure with what we currently know. We could learn something groundbreaking tomorrow... or never. It is not however, unrealistic to ever develop a cure. We don't know enough to make that assumption.

 

[Eric75007]

So the audiogram doesn't rule me out from using Lenire. I'll wait and see how things evolve between now and when it shows up in the US.

View attachment 32585[/QUOTE]

What does rule you out of using Lenire, precisely?

 

[GlennS]

What does rule you out of using Lenire, precisely?

Scroll down on this post. It seems fairly forgiving based on the audiograms I've been seeing people post.

 

[Phat Tuna]

Not sure if this was discussed or not, but can Lenire help with "reactive tinnitus"? Has anyone had experience in this helping their reactive tinnitus? Also, would Lenire help with multi-tone/multi-sound tinnitus? Or would having multiple tones/sounds rule you out of being a candidate for the treatment?

 

[ChrisBoyMonkey]

Not sure if this was discussed or not, but can Lenire help with "reactive tinnitus"? Has anyone had experience in this helping their reactive tinnitus? Also, would Lenire help with multi-tone/multi-sound tinnitus? Or would having multiple tones/sounds rule you out of being a candidate for the treatment?

For it being reactive, we have a user that got worse while using Lenire. He also was exposed to a fire alarm, and left with a new sound after that, so it might not help much. It's hard to say with his experience, but he's the only person who has reported using Lenire and having reactive tinnitus.

As for how many sounds there are, that doesn't matter, you can have an "orchestra" of sounds and still use the device.

 

[jmasterj]

I haven't posted much in the thread, but I am still planning on taking my assessment appointment two weeks from today. From what I have read there seems, thus far, from the members here to not have much of a positive result.

I have thought a few times about canceling, but I am still going to go through with it. It will cost me quite a bit with the travel expenses beyond just the device itself, but I still think it is worth a shot.

The reason I still feel there is hope if this device is used beyond the 12 weeks it still could elicit better results. They just used the 12 week number as an arbitrary number for the trials. There is nothing saying that using this device over a year could prove greater results, so to me it is worth a go. Heck it is cheaper than Desyncra and Levo and we know those don't work.

 

[Ruse]

I haven't posted much in the thread, but I am still planning on taking my assessment appointment two weeks from today. From what I have read there seems, thus far, from the members here to not have much of a positive result.

I have thought a few times about canceling, but I am still going to go through with it. It will cost me quite a bit with the travel expenses beyond just the device itself, but I still think it is worth a shot.

The reason I still feel there is hope if this device is used beyond the 12 weeks it still could elicit better results. They just used the 12 week number as an arbitrary number for the trials. There is nothing saying that using this device over a year could prove greater results, so to me it is worth a go. Heck it is cheaper than Desyncra and Levo and we know those don't work.

It's an investment.

Even if the results are lackluster there's no reason you can't give it another go in a year or so with updated timings.

 

[Krolo]

I am truly curious to see further patient subtyping regarding this. It would be great to be able to aggregate the patients using Lenire here in the forums and try to deduce what might be a bad match for now. For now it seems as reactive tinnitus might be one. There are probably others but there might be a specific profile except for the hyperacusis link which makes for a good candidate.

 

[ruud1boy]

To an extent, Neuromod are into uncharted territory now - with patients using the device long-term. They don't know what effect this will have.