Q&A: Tinnitus Hub Meets Neuromod (Lenire)

[AliceW]

If the device doesn't work, would they invest millions of euros to launch the device on the market?

I believe in neuroplasticity to treat tinnitus (read the book of Norman Doidge).

This device seems very promising.

(Professor Lim who works on it is also Associate Professor and Institute for Translational Neuroscience Scholar at the University of Minnesota in the United States). Look at the video

 

[AliceW]

@Steve, are you sure the device will be available in January in Ireland?

 

[Alex Matyjasek]

Are those actual participants or hired actors? I'm so suspicious =(

Just wait for somebody on Tinnitus Talk to try it and give their opinion. That's the most reliable source.

 

[ruud1boy]

@Steve, are you sure the device will be available in January in Ireland?

They didn't say anything about January - just '2019'. Patience........

 

[Bndsmheowqhe]

Just wait for somebody on Tinnitus Talk to try it and give their opinion. That's the most reliable source.

I'm sure they're lurking here, possibly even posting anonymously. When people here started criticizing the testimonials suddenly new ones appeared. If they are smart they will do everything possible to make our experiences with this product positive.

 

[Alex Matyjasek]

I'm sure they're lurking here, possibly even posting anonymously. When people here started criticizing the testimonials suddenly new ones appeared. If they are smart they will do everything possible to make our experiences with this product positive.

I don't see the point putting so much effort into something that doesn't work. Does that make any sense to you? I guess after so many blunders people find hard to believe this is different...

 

[Bndsmheowqhe]

I don't see the point putting so much effort into something that doesn't work. Does that make any sense to you? I guess after so many blunders people find hard to believe this is different...

I just hope this isn't a quick cash grab done out of desperation. They know that there are other devices that will be out in a few years and they have a lot of investors to answer to.

 

[Sam Bridge]

So when this thing rolls out and it successfully treats most of us, is it the kind of thing that will be presented on BBC News etc? Basically a huge media spotlight?

 

[Eric N]

I just hope this isn't a quick cash grab done out of desperation. They know that there are other devices that will be out in a few years and they have a lot of investors to answer to.

If it does not work wouldn't word get out quickly? Since they are only releasing in limited capacities how many people would buy before news of its efficacy is called into question?

 

[Bndsmheowqhe]

If it does not work wouldn't word get out quickly? Since they are only releasing in limited capacities how many people would buy before news of its efficacy is called into question?

I don't think it's going to be a complete success or failure. I think it will have some positive results for some people but probably will not be a silver bullet. Still a lot better than nothing though.

 

[Manny]

I don't think it's going to be a complete success or failure. I think it will have some positive results for some people but probably will not be a silver bullet. Still a lot better than nothing though.

I'm probably expecting too much out of this, even if it helps me it may be only minimal help... then again you never know. Longer use could bring longer results, and, most importantly it could give me a reduction in pitch!
But who knows. Ugh.
I will find out soon, I hope.

 

[GlennS]

If it does not work wouldn't word get out quickly?

One would think. A lot of this is going to have to do with whatever contract they have you sign. For instance, if there's a moneyback guarantee then customers/patients can just lie and claim it did nothing (even if it did help) and get their money back, but if there's no refunds possible then customers/patients are taking a big financial gamble. Either way it's going to require a level of trust between both sides. This is because it's so difficult to objectively, independently, and clinically quantify the intensity of tinnitus.

 

[Marko Nakovski]

To be honest minimal improvement will be considered as a failure. I don't expect miracles but at least 40 percent and even more improvement in our tinnitus will live up the expectations.

If I'm not wrong they disclosed that the patients had between 60-80 percent improvements in the trials.

Now let's say that this device improve our tinnitus by 10-20 percent, at least that is what I consider as a minimum to say the device isn't a failure.

Of course this is helpful too but I think that kind of improvement can be done with something else (healthy life, vitamins, reducing stress etc) rather then spending 3000 euros on a device.

I hope I'm wrong, I truly believe this will not be the case with this device.

 

[Pleasure_Paulie]

Just wait for somebody on Tinnitus Talk to try it and give their opinion. That's the most reliable source.

Certainly not the most reliable source, but certainly would give hope if people are responding to the treatment on Tinnitus Talk.

 

[Alex Matyjasek]

Certainly not the most reliable source, but certainly would give hope if people are responding to the treatment on Tinnitus Talk.

What is the most reliable source?

 

[Rajin]

Excellent! Looks promising, works with any individual's hearing loss! The tinnitus frequency doesn't matter. Great work!

 

[KTW]

Would it work with pulsatile tinnitus?

 

[Taffy]

Enjoyed the interview very much. This device looks like the most promising and might actually help with tinnitus.

Mine has gotten so much worse in the last 2 years I would gladly go to Ireland as many times as needed to get help.

Thanks for the great video and all the work you do on behalf of us tinnitus sufferers!

 

[Sonia Estima]

This is fantastic!

But I wonder how widely available it will be in the US? And at what cost? And whether insurance will cover it, might make a difference in when/whether I may be able to try it.

When I consulted an ENT, he just basically shrugged his shoulders and said: I'll need a hearing aid in a few years; and good bye... Very frustrating.

 

[lapidus]

Would it work with pulsatile tinnitus?

Doubt it since pulsatile tinnitus isn't tinnitus but rather a vascular symptom.

 

[Don Tinny]

This is fantastic!

But I wonder how widely available it will be in the US? And at what cost? And whether insurance will cover it, might make a difference in when/whether I may be able to try it.

When I consulted an ENT, he just basically shrugged his shoulders and said: I'll need a hearing aid in a few years; and good bye... Very frustrating.

Regular ENTs want to continue prescribing trimetazidine and betahistine forever.
They are not informed about any progress and think that being pessimistic they seem to know more.

 

[Clare B]

I was lucky enough to be selected to be on the clinical trials for this.

I was pretty skeptical about it but my tinnitus was driving me nuts so I was willing to try anything. It did improve my tinnitus by the end of the trial and interestingly my tinnitus continued to quieten after I stopped using the device.

By the time the 6 month check came around my tinnitus had gone completely. I had a constant worry that the tinnitus would return but it hasn't to this day.

I had my tinnitus for over a year and a half, its cause was completely unknown but it came on gradually. It was in my right ear and was a constant beep tone, that could be worse on some days. They said my hearing was perfect and I can hear quite high frequency sounds.

I am really thankful it worked for me but I did happen to speak to some older participants in the trial and they did not have the same improvement. So I guess it works better for some than others, depending on your tinnitus and maybe not so much if you have hearing loss.

I hope it's okay for me to comment here, I think it is now that the trial is over. I don't want to give anyone false hope but I had to say it did work for me. I guess I was lucky!

 

[Eric N]

I was lucky enough to be selected to be on the clinical trials for this.

I was pretty skeptical about it but my tinnitus was driving me nuts so I was willing to try anything. It did improve my tinnitus by the end of the trial and interestingly my tinnitus continued to quieten after I stopped using the device.

By the time the 6 month check came around my tinnitus had gone completely. I had a constant worry that the tinnitus would return but it hasn't to this day.

I had my tinnitus for over a year and a half, its cause was completely unknown but it came on gradually. It was in my right ear and was a constant beep tone, that could be worse on some days. They said my hearing was perfect and I can hear quite high frequency sounds.

I am really thankful it worked for me but I did happen to speak to some older participants in the trial and they did not have the same improvement. So I guess it works better for some than others, depending on your tinnitus and maybe not so much if you have hearing loss.

I hope it's okay for me to comment here, I think it is now that the trial is over. I don't want to give anyone false hope but I had to say it did work for me. I guess I was lucky!

Wow that is great to hear, how many other participants did you ask? They did not have any improvement or just some?

And what do you mean by older? Age or longer on the trial?

 

[pochito]

I was lucky enough to be selected to be on the clinical trials for this.

I was pretty skeptical about it but my tinnitus was driving me nuts so I was willing to try anything. It did improve my tinnitus by the end of the trial and interestingly my tinnitus continued to quieten after I stopped using the device.

By the time the 6 month check came around my tinnitus had gone completely. I had a constant worry that the tinnitus would return but it hasn't to this day.

I had my tinnitus for over a year and a half, its cause was completely unknown but it came on gradually. It was in my right ear and was a constant beep tone, that could be worse on some days. They said my hearing was perfect and I can hear quite high frequency sounds.

I am really thankful it worked for me but I did happen to speak to some older participants in the trial and they did not have the same improvement. So I guess it works better for some than others, depending on your tinnitus and maybe not so much if you have hearing loss.

I hope it's okay for me to comment here, I think it is now that the trial is over. I don't want to give anyone false hope but I had to say it did work for me. I guess I was lucky!

Thank you so much for coming here to tell us about your success and congratulations... i hope it will help some of us around here as well.

 

[MarkLud]

I was lucky enough to be selected to be on the clinical trials for this.

I was pretty skeptical about it but my tinnitus was driving me nuts so I was willing to try anything. It did improve my tinnitus by the end of the trial and interestingly my tinnitus continued to quieten after I stopped using the device.

By the time the 6 month check came around my tinnitus had gone completely. I had a constant worry that the tinnitus would return but it hasn't to this day.

I had my tinnitus for over a year and a half, its cause was completely unknown but it came on gradually. It was in my right ear and was a constant beep tone, that could be worse on some days. They said my hearing was perfect and I can hear quite high frequency sounds.

I am really thankful it worked for me but I did happen to speak to some older participants in the trial and they did not have the same improvement. So I guess it works better for some than others, depending on your tinnitus and maybe not so much if you have hearing loss.

I hope it's okay for me to comment here, I think it is now that the trial is over. I don't want to give anyone false hope but I had to say it did work for me. I guess I was lucky!

First, CONGRATULATIONS! That is so awesome to hear and I'm unbelievably happy for you. And second, thanks for passing along a lot of hope for the rest of us!

 

[Craig Rogers]

Thank you! Finally something that offers some hope for the future.

 

[BrynM]

I've just watched the video, very excited that relief may be on its way. I live in Ireland so hopefully I can get the treatment when it's available.

Great video that asked all the questions I would have asked myself.

I think that they need to be careful who they allow to sell the device as we don't want a cartel so we can't get hold of it as the waiting lists to see professional Audiologists can be a long time and very costly.

But in any case I am really hoping to get going with this ASAP.

 

[Pleasure_Paulie]

What is the most reliable source?

A robust and well controlled clinical study with a larger well representative sample size with logical co primary end points will always be more indicative than anecdotal responses on a forum.

It's one of the reasons people end up down rabbit holes on this forum as one person reports improvement using ZYZ remedy and because of our desperation we all follow!

 

[Manny]

I've just watched the video, very excited that relief may be on its way. I live in Ireland so hopefully I can get the treatment when it's available.

Great video that asked all the questions I would have asked myself.

I think that they need to be careful who they allow to sell the device as we don't want a cartel so we can't get hold of it as the waiting lists to see professional Audiologists can be a long time and very costly.

But in any case I am really hoping to get going with this ASAP.

Hey! Can you please let us know your experience once you've used the device?

 

[BrynM]

Perhaps desperate measures to gain some sort of relief, so I already feel better after listening to the video. It's better to have hope, I for one will be looking to try this as no Audiologists have been able to offer any help at all.