Q&A: Tinnitus Hub Meets Neuromod (Lenire)

[Clare B]

Aw man. I really, really hope you're legit. I choose to believe you are because I don't think I could deal with the disappointment if this was a bamboozle lol.

Thanks for commenting, every little bit of hope helps.

I'm just taking a few minutes out of my day to comment here because I know what it's like to have tinnitus. I was so frustrated. I faced my fair share of disappointments, including the hope of it being resolved after surgery. I decided to keep my expectations low after that.

SO, I would say it may not work for everyone, probably not, but it did work for me.

 

[Alex Matyjasek]

I don't want to give anyone false hope but it came up as an option for me to do the trial. I was willing to do it because it didn't involve any medication. I had nothing to lose by doing it.

I kept my expectations low because I didn't want to be disappointed if it didn't work. Even at the end of the trial after my tinnitus got quieter, I didn't believe it and on that first amazing day I had silence I didn't believe it.

I savoured every second of the silence. My tinnitus began to gradually come and go like that, I had a couple of quiet days, and it would come back for a few.

Then I was no longer focusing on it so much and it didn't come back. I don't live in fear of it returning but I know it's not impossible but now I would have hope.

I don't take it for granted that it's gone now but I can empathise with those that still have it.

How bad was your tinnitus? Mild, moderate, severe?

Thanks for the your reply. I know this device doesn't work for everybody and I know the best thing (as you said) is not to keep high hopes just in case it doesn't work for me.

Good luck and I hope you keep enjoying silence.

 

[Clare B]

She appears to have created an account here in early 2016... so obviously she's legit. Wonderful!!

I only came back here (to Tinnitus Talk) because that video interview came into my inbox and I was interested in hearing some of the technical information about the device. We weren't told that much during the trial.

I wouldn't want to give anyone false hope but I had no hope back then and it's not a good place to be.

Okay, I must go take the dog for a walk!

 

[Clare B]

How bad was your tinnitus? Mild, moderate, severe?

Thanks for the your reply. I know this device doesn't work for everybody and I know the best thing (as you said) is not to keep high hopes just in case it doesn't work for me.

Good luck and I hope you keep enjoying silence.

My tinnitus was moderate but severe enough for me to make me frustrated, desperate, angry, depressed. Hopeless. It was there all the time, worse when I was trying to go asleep at night but it began to disrupt my concentration during the day too.

Thanks, I hope it works for some of you and if it doesn't don't give up hope, something else might come along. I enjoy and savour every moment of silence.

 

[GlennS]

Perhaps neuroplasticity isn't working so good in older brains?

A few of the testimonial videos on their site are from people that look well into their 50s or older. They didn't say they had tinnitus for 20+ years, though.

 

[annV]

A few of the testimonial videos on their site are from people that look well into their 50s or older. They didn't say they had tinnitus for 20+ years, though.

They must have had tinnitus for less than 5 years because part of the eligibility criteria was:
Eligible patients will be aged 18–70 years at screening; self-report having experienced tinnitus for >3 months and <5 years.

 

[GlennS]

They must have had tinnitus for less than 5 years because part of the eligibility criteria was:
Eligible patients will be aged 18–70 years at screening; self-report having experienced tinnitus for >3 months and <5 years.

I'd be interested in knowing how they shaped these criteria, like whether this was due to the results from the first (failed?) MuteButton test?

 

[Eric N]

@Clare B could you please give us some information on the device.

How did the tones sound? Were they loud? Were they high frequency sounds?

 

[Ecip]

@Clare B if you had a hearing test, could you please post the audiogram?

 

[Sam Bridge]

Someone on a Facebook group said beware of stimulating the trigeminal nerve as it can cause neuralgia.

Anyone know about that?

 

[dayma]

A few of the testimonial videos on their site are from people that look well into their 50s or older. They didn't say they had tinnitus for 20+ years, though.

One thing that is known even outside of tinnitus is that brain plasticity decreases with age. So it makes sense a 20 year old may have more success with plasticity than say a 60 year old.

 

[Clare B]

Maybe you had hearing loss in higher frequencies. I assume the hearing tests you had only went up to 8 kHz?

So glad it worked for you though

May I ask your age?

I don't know the exact range they tested, only that the audiologist said my hearing was very good and that I was a good test subject because my results (in what I was hearing in the tests) were extremely consistent.

I don't think I have hearing loss in the higher frequencies, a few weeks ago we were at a school open day (for my daughter) and the science teacher had this machine that emitted different frequency sounds. He played some of the higher frequencies expecting only the children to hear it and I could hear it loud and clear while most of the other adults couldn't hear it, including the teacher!

I am 38 nearly 39. I count myself extremely lucky it worked for me.

 

[kmohoruk]

Thank you very much @Markku and @Steve for doing this Q&A! I found it greatly informative!

Thank you Mr. O'Neill for doing this sit down and answering all the questions. I appreciated your honesty with what you could answer at this point. Keep up the great work!

 

[Clare B]

@Clare B could you please give us some information on the device.

How did the tones sound? Were they loud? Were they high frequency sounds?

The tones that were played on the device varied, they were never loud or unpleasant. They varied in tone, frequency and sequence, they were quite relaxing to listen to. They sounded like a series of different types of beeps.

The thing I found hardest to get used to was keeping the tongue tip in my mouth.

 

[Clare B]

@Clare B if you had a hearing test, could you please post the audiogram?

I was never given a copy of the audiogram.

 

[Don Tinny]

Someone on a Facebook group said beware of stimulating the trigeminal nerve as it can cause neuralgia.

Anyone know about that?

I read that neuralgia causes a terrible pain. Fortunately, it seems to have treatment. I guess it's more benevolent than tinnitus.

 

[ruud1boy]

I'm just taking a few minutes out of my day to comment here because I know what it's like to have tinnitus. I was so frustrated.

With all due respect Clare, you might know what it's like to have tinnitus, but that's not the same as suffering from tinnitus.

The criteria they applied for the trial excluded anyone with a THI score of 71+, so it's probable you have 'moderate' tinnitus at worst - whereas most of the desperate people on this forum, including me, are battling against 'severe' or even 'catastrophic' tinnitus.

I'm grateful for you coming on here to share your experiences, but I fear you're going to be interrogated relentlessly, as you're the first to put your head above the parapet.

 

[TimmyC]

I wonder why the VA (from any country) have not looked into this. The science is there. If this was able to reduce tinnitus to a level that gets veterans back to work, then this could be a HUGE money saver as millions cannot work because of this problem (it's the highest claim from veterans). It may not be a cure but if this puts people back to work that's a gigantic win.

 

[Clare B]

With all due respect Clare, you might know what it's like to have tinnitus, but that's not the same as suffering from tinnitus.

The criteria they applied for the trial excluded anyone with a THI score of 71+, so it's probable you have 'moderate' tinnitus at worst - whereas most of the desperate people on this forum, including me, are battling against 'severe' or even 'catastrophic' tinnitus.

I'm grateful for you coming on here to share your experiences, but I fear you're going to be interrogated relentlessly, as you're the first to put your head above the parapet.

I know that my tinnitus wasn't as bad as some people's but it was no picnic.

It was affecting my ability to concentrate on work and to sleep, which takes its toll on your mental health. It's different for everyone, how much you can tolerate. Your personality and mindset will affect how well you can cope with it.

Anyway, I only wanted to share that it worked in my case, I am extremely grateful that it did. I know many of you are really suffering and there is no immediate solution to that.

I don't mind answering questions if it will help anyone. I believe this device helped me and I really hope it works for someone else too. I think it's important to have hope.

This device may not be the answer for many people here, but it might. I just want people to have hope, something else may come along that will help them.

 

[GlennS]

One thing that is known even outside of tinnitus is that brain plasticity decreases with age. So it makes sense a 20 year old may have more success with plasticity than say a 60 year old.

The eligibility filter they chose was based on length of time with tinnitus, not age per se. You can have a 25 year old who got tinnitus at 19 and they would not have allowed that person into the trial, whereas they had people over 50 in the trial, and some of them (by virtue of the testimonials) claim it helped. So we're talking about two discrete things, age vs. time since developing tinnitus.

If the treatment is most successful with young people then I would expect the testimonials to be heavily stacked with them but only 2 of the 8 testimonials look younger than 40.

 

[Eric N]

I know that my tinnitus wasn't as bad as some people's but it was no picnic.

It was affecting my ability to concentrate on work and to sleep, which takes its toll on your mental health. It's different for everyone, how much you can tolerate. Your personality and mindset will affect how well you can cope with it.

Anyway, I only wanted to share that it worked in my case, I am extremely grateful that it did. I know many of you are really suffering and there is no immediate solution to that.

I don't mind answering questions if it will help anyone. I believe this device helped me and I really hope it works for someone else too. I think it's important to have hope.

This device may not be the answer for many people here, but it might. I just want people to have hope, something else may come along that will help them.

Did you experience noticeable relief session by session? Or did the improvements only come at the end?

 

[Bill Bauer]

The funny thing is now the tinnitus is gone

Is it completely gone? Can you hear anything if you wear earplugs in a quiet room?

 

[Ddrhl]

Having experimented with just playing a tone on http://generalfuzz.net/acrn/ and getting a few seconds of relief, I keep thinking there should be a way to just get ear buds that do that... countering the tinnitus in my head.

Maybe this is as close as it gets. I hope the cost isn't prohibitive...

I wish med costs weren't prohibitive for anyone ever, for that matter.

 

[MarkLud]

With all due respect Clare, you might know what it's like to have tinnitus, but that's not the same as suffering from tinnitus.

The criteria they applied for the trial excluded anyone with a THI score of 71+, so it's probable you have 'moderate' tinnitus at worst - whereas most of the desperate people on this forum, including me, are battling against 'severe' or even 'catastrophic' tinnitus.

I'm grateful for you coming on here to share your experiences, but I fear you're going to be interrogated relentlessly, as you're the first to put your head above the parapet.

All due respect, it seems awfully rude to dismiss her by playing the "but mine is worse than yours" card and assume she wasn't suffering too. We're all on here because we have varying degrees of tinnitus.

We're lucky enough to have someone who was in the trial discuss her (positive) experiences on here and should be grateful to hear as much. Her tinnitus was bad enough for her to seek out the trial in the first place... people with harmless tinnitus wouldn't be doing that.

Let's be happy that it's worked for her and we have an actual success story!

 

[EDDTEKK]

If I remember correctly Ross O'Neill told that the tinnitus duration doesn't matter!?

But if they had only participants with max 5 years tinnitus, how does he know?

Still I am searching for a biomarker...

 

[Don Tinny]

I believe this device helped me and I really hope it works for someone else too. I think it's important to have hope.

This device may not be the answer for many people here, but it might. I just want people to have hope, something else may come along that will help them.

It sounds very cautious. Were there other patients with significant improvements or would you say that your case was an exception?

I hope to read positive experiences from other forum users.

Thanks again.

 

[RCP1]

Did you experience noticeable relief session by session? Or did the improvements only come at the end?

Exciting times... keep hanging on guys. This is some feedback!

 

[Bart]

Looks promising!

Finally something concrete that will actually come on the market soon compared to the usual quackery, speculations and general wishful thinking.

 

[Bill Bauer]

I wish med costs weren't prohibitive for anyone ever, for that matter.

But then people wouldn't have enough of an incentive to develop new medicines and medical devices. Be careful what you wish for.

 

[GlennS]

If I remember correctly Ross O'Neill told that the tinnitus duration doesn't matter!?

The moral of the story is they need to run a broader test. Until they do that all they or we can do is speculate whether it would work or not (which is the direction this thread is going) and that's not how this should go down.

It shouldn't come down to them putting this on the market and expecting people outside of the initial test criteria gambling with their money.

I mean, demographically speaking I have to imagine the vast majority of tinnitus sufferers have had it for over 5 years and these would be the people clamoring to get it.