Q&A: Tinnitus Hub Meets Neuromod (Lenire)

[Eric N]

Excited and scared. Imagine being in the group for whom this will not work.

I wonder what are the factors that will increase the odds of it working.

 

[Clare B]

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?

I bumped into two of them afterwards, we weren't supposed to discuss the trial while it was ongoing. They had minimal improvement. They were older in age, over 60.

 

[Clare B]

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.

I had pretty much given up hope. I didn't even expect it to work. I really do hope it helps others.

 

[Clare B]

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!

Thanks! I had given up hope and didn't have great expectations for the trial but I was ready to try anything. So, don't give up hope.

 

[Markku]

Yesterday we added the subtitles to the video, which you can activate via the CC button at the bottom right corner.

The subtitles were created by a (cheap) commercial service, but these things are never perfect, so they required a lot of proof reading and correcting before we felt comfortable releasing them. This work was done by five of our volunteers: @Hazel, @Manny, @Deamon22, @JLP and @hans799.

In total, probably about 20h of work went into just this task - subtitling! It was truly a team effort, and we are so proud and grateful to have people on board willing to pay back to the community so selflessly.

 

[dayma]

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 for taking the time to post here. This is a ray of sunshine I needed today!

 

[Alex Matyjasek]

Finally, and the great news is it works for somebody who hasn't got hearing loss -
just like me! Now let's hope this isn't fake. I hope this device is gonna be available in Spain.

 

[TuxedoCat]

This work was done by five of our volunteers: @Hazel, @Manny, @Deamon22, @JLP and @hans799.

Hazel, Manny, Deamon, JLP, Hans, Thank you very much for taking the time to work on the video. I really appreciate subtitles, I'm sure others feel the same. Gratefully, TC

 

[Terry Proveau]

Well I have skimmed this report and I am not sure if it applies to me at all.

My tinnitus is very very high frequency and very very loud 24/7. I have had it since 2001. I am 62 years of age and have not worked much since 2004 and have been on pension disability because of the effects of my tinnitus since about 2012.

I have hyperacusis as well.

I have 100% hearing loss on my right side/ear where the tinnitus sounds like it comes from, as well. I have very little hearing loss in my left ear hence the hyperacusis, which is also pretty bad.

I can't stand any noise generators, relaxation sounds etc. as they just turn up the tinnitus volume so I am not sure if I would even be a candidate for this therapy?

Any comments/suggestions are appreciated. Thanks.

 

[TuxedoCat]

I bumped into two of them afterwards, we weren't supposed to discuss the trial while it was ongoing. They had minimal improvement. They were older in age, over 60.

That's interesting because the prevalence of tinnitus in the US population peaks among 60-69 year olds.

I was also wondering, since TENT-A and TENT-A2 trials were in Ireland and at the same location if there were people who took part in both trials? TC

 

[TuxedoCat]

I have 100% hearing loss on my right side/ear where the tinnitus sounds like it comes from, as well.

Those with hearing loss >80 dB in at least one measurement frequency in the range 2-8kHz were excluded from the study. So it seems unlikely that you would benefit.

Are you a candidate for a cochlear implant?

 

[ruben ruiz]

Is the device to be bought for home use or with a provider?

Just waiting on pins and needles. How long til an audiologist is schooled to administer the device is my concern. I live in Arizona. The gent said it best how those inflected with tinnitus are frustrated with audiologists. The possibility of sleeping better. Just hearing those words makes me cry. Yea I'm crying right now. Now we deal with bureaucracy.

Thanks to all those who are working for this cause and their diligence and humanity.

 

[RCP1]

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.

Me too BrynM - You up for a few silent Guinness in April?!

 

[Marko Nakovski]

@Clare B May I ask what was the cause of your tinnitus? BTW, amazing news thanks for sharing your story with us!

 

[GlennS]

They did say the device worked better for those with hyperacusis so there isn't a clear pattern yet in determining who may or may not benefit.

I'd like to see celebrities like Jeff Beck try a device like this. You'd think they'd be the first to seek something like this out and they'd have no reason to lie about the results.

 

[Autumnly]

Is the device to be bought for home use or with a provider?

The device is meant to be used at home but you will need to see a doctor to set it up.

 

[Don Tinny]

I bumped into two of them afterwards, we weren't supposed to discuss the trial while it was ongoing. They had minimal improvement. They were older in age, over 60.

Thanks for sharing your experience.

I wonder if it will be due to their age or if it is related to the time they have been suffering from tinnitus. Perhaps a "20 years old" tinnitus is more difficult to treat.
I have several tones, some come and go, some are new and others are very old.

 

[TLion]

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

 

[Don Tinny]

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

It can be a cause.

"The important consideration of neurotransmitter interactions and the aging brain is discussed by Mora.3 Preclinical data demonstrate that regional neurotransmitter interactions in functionally connected systems (in this case, glutamate modulation of dopamine and GABA) may change as a function of age, particularly under conditions of stress."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3622467/

 

[Clare B]

Finally, and the great news is it works for somebody who hasn't got hearing loss -
just like me! Now let's hope this isn't fake. I hope this device is gonna be available in Spain.

Yes, my hearing is perfect. I was really relieved it worked for me, I had zero expectations from it. I had nothing to lose by doing the trial, apart from the time travelling across the country but it was definitely worth it!

It's definitely not fake but tinnitus is so complex I don't know if it would work for everyone but it's worth trying if you've run out of options.

I was offered medication for tinnitus by my doctor but I decided not to go down that road.

 

[Clare B]

That's interesting because the prevalence of tinnitus in the US population peaks among 60-69 year olds.

I was also wondering, since TENT-A and TENT-A2 trials were in Ireland and at the same location if there were people who took part in both trials? TC

I don't know about that, I only took part in the second trial. It was advertised on the radio and my mom told me about it. I was lucky to get selected.

 

[Clare B]

@Clare B May I ask what was the cause of your tinnitus? BTW, amazing news thanks for sharing your story with us!

There was no known cause of my tinnitus. It came on gradually, it started quite low and became louder over time, it was only in my right ear. I have really good hearing.

I had lots of tests done, including an MRI scan, they did discover some small polyps at the back of my nose, they thought that might be the cause so I had surgery to remove them.

I was very disappointed when the tinnitus was still there after they were removed. I had pretty much given up hope at that point.

I was so frustrated, it was affecting my sleep massively and my concentration during the day.

That's why I kept my expectations low when I did the trial. I am so grateful it worked for me.

 

[grate_biff]

Yes, my hearing is perfect

So you have no idea what caused your tinnitus?

Seems like most of the testimonials of the clinical trial participants on Neuromod's web site had noise-induced tinnitus, so hopefully it will work for us as well.

 

[Alex Matyjasek]

Yes, my hearing is perfect. I was really relieved it worked for me, I had zero expectations from it. I had nothing to lose by doing the trial, apart from the time travelling across the country but it was definitely worth it!

It's definitely not fake but tinnitus is so complex I don't know if it would work for everyone but it's worth trying if you've run out of options.

I was offered medication for tinnitus by my doctor but I decided not to go down that road.

I think it's probably the only reliable option right now. Everything I've read hasn't been promising except for this.

 

[Clare B]

Thanks for sharing your experience.

I wonder if it will be due to their age or if it is related to the time they have been suffering from tinnitus. Perhaps a "20 years old" tinnitus is more difficult to treat.
I have several tones, some come and go, some are new and others are very old.

Interesting, I don't know, tinnitus is so complex, it may be the length of time they had it for. I had my tinnitus for a year and a half.

It was only in my right ear, one constant beep tone, like someone was sending me Morse code messages! It was nearly always the same tone but I did notice it could get louder for maybe a few days then go back to the usual level.

Sleep was the hardest thing for me, I just had to put the radio on or it would drive me nuts.

The funny thing is now the tinnitus is gone I can't go to sleep without the radio!

 

[Sam Bridge]

There was no known cause of my tinnitus. It came on gradually, it started quite low and became louder over time, it was only in my right ear. I have really good hearing.

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?

 

[Clare B]

So you have no idea what caused your tinnitus?

Seems like most of the testimonials of the clinical trial participants on Neuromod's web site had noise-induced tinnitus, so hopefully it will work for us as well.

I have no idea what caused it. I never really went to concerts so I had no damage from that. I live in the countryside and it's really quiet, that's probably why it was driving me nuts when I had it, there was little noise to mask it. I just had to have the radio on all the time for background noise.

I totally get how frustrating it is to have this problem.

 

[Helheim]

I was very disappointed when the tinnitus was still there after they were removed. I had pretty much given up hope at that point.

I was so frustrated, it was affecting my sleep massively and my concentration during the day.

That's why I kept my expectations low when I did the trial. I am so grateful it worked for me.

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.

 

[Clare B]

I think it's probably the only reliable option right now. Everything I've read hasn't been promising except for this.

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.

 

[annV]

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.

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