Q&A: Tinnitus Hub Meets Neuromod (Lenire)

[Sam Bridge]

Where did the January release date come from anyway?

 

[Manny]

Where did the January release date come from anyway?

It came from Markku; Steve; David of the BTA: (Who all got it from Neuromod obviously)

Ireland launch apparently in January. UK/rest of EU to follow later. They are also working to get it approved via FDA so they can sell it in the USA.

Yes, they said they are aiming for January.

Looking at a January launch in Ireland.

But, January was not mentioned in the recent video.
:/ :/ :/ :/

 

[Bam]

Ugh. Why do I have this dreadful sinking feeling that you are right!

Because I am dude. And I don't say this to be negative but to manage expectation. It's going to be Spring/Summer at the earliest.

 

[Bam]

It came from Markku; Steve; David of the BTA: (Who all got it from Neuromod obviously)


But, January was not mentioned in the recent video.
:/ :/ :/ :/

If it's January. Great. If not @Manny we wait and suffer together and pass the long days mugging off Jastreboff for being a massive **** and promoting a bullshit ideology that has left us all stranded in hell for so bloody long.........Oh and I promise if I get cured I'm going to tattoo that mother******'s severed head on my ass.

 

[Eric N]

Because I am dude. And I don't say this to be negative but to manage expectation. It's going to be Spring/Summer at the earliest.

Has anyone tried contacting them to ask?

 

[Bam]

Has anyone tried contacting them to ask?

Yup. No response. I think they underestimated the massive firestorm of demand and desperation across the world... Other scientists please take note. Have a day off from curing cancer and take a gander at head noise. We're dying to throw cash at you.

 

[Sam Bridge]

@RCP1 Go to the office and demand answers about the release date!

 

[Don Tinny]

Has anyone tried contacting them to ask?

I wrote to them a few months ago asking if it was useful for non-somatic tinnitus and they didn't answer me. But I suppose that if someone asks about availability they may have more luck.

 

[Clare B]

@Clare B To me - somebody who has intricately planned their own death due to this condition- you are as remarkable and noteworthy as somebody who has survived a plane crash in the mountains that has wiped out every single person on board, and has somehow crawled from the wreckage unscathed and survived for several weeks on melted snow and the flesh of the other passengers dead bodies whilst fighting off grizzly bears with nothing more than a complimentary toothbrush.......No shit! That's how miraculous I find your escape from this nightmare.

Man I really wish there were others from the trial talking about their experience on here too. I'd really like to know what kind of the results they got. I really can't be the only one. If I was the only one surely they'd want to study me more. The fact that I was completely cured. Surely if I was the only one they would have called me and said we'd like to study your particular case and outcome.

So, I'm hoping because they didn't do that then there are more people that had significant improvement or were completely cured like me. Hold on to hope, I am finally out of the nightmare.

 

[OnceUponaTime]

Ugh. Why do I have this dreadful sinking feeling that you are right. PLEASE lord let this be wrong and let the device be available January!!

January is in 3 days!!!

@Markku or @Steve Do they have these devices made and ready to sell???? Are they going to advertise on TV/Radio???? Where will they be selling it?? Thanx guys.

 

[Soren]

I wrote to them a few months ago asking if it was useful for non-somatic tinnitus and they didn't answer me. But I suppose that if someone asks about availability they may have more luck.

Try Twitter. I have sent them an e-mail long ago but never got an answer. But on Twitter they answered.

 

[Clare B]

Hi Clare B,

Did you notice the improvement gradually and when did it start? Thanks so much that you are here to share your first hand experience.

It was near the end of the treatment I noticed the improvement. The tinnitus was quieter. It continued to improve until I had my first quiet day and then came and went for a few weeks. The quiet days became more frequent and then it was completely gone! The full treatment was for 12 weeks. We had check ups after that up to 12 months.

One other thing I forgot to mention, I think actually having the device and doing the treatment helped me psychologically too because I had something to do that was supposed to be helping my tinnitus. Even though I didn't have much improvement until near the end of the treatment because I was actively doing something twice a day to treat the tinnitus I felt more hopeful. I felt like I was doing something! Which was better than nothing.

 

[Bam]

It was near the end of the treatment I noticed the improvement. The tinnitus was quieter. It continued to improve until I had my first quiet day and then came and went for a few weeks. The quiet days became more frequent and then it was completely gone! The full treatment was for 12 weeks. We had check ups after that up to 12 months.

One other thing I forgot to mention, I think actually having the device and doing the treatment helped me psychologically too because I had something to do that was supposed to be helping my tinnitus. Even though I didn't have much improvement until near the end of the treatment because I was actively doing something twice a day to treat the tinnitus I felt more hopeful. I felt like I was doing something! Which was better than nothing.

This is actually very encouraging that your improvement came late on as it will mean people who try it are not discouraged by lack of early progress and keep the faith for at least six months.

 

[Bam]

Man I really wish there were others from the trial talking about their experience on here too.

That is strange to say the least. Unless they don't want to jinx it or relive the trauma. Or simply are not as kind and gracious as you Clare and don't really want to be interrogated by a load of desperate sufferers ....... I think it's promising nobody is on here pissing all over it at least.

 

[Arseny]

@Clare B
Hello, thank you for taking your time to answer the questions.

Did you have visual snow (like a film grain) or floaters (white or black squiggly lines) in your vision? If you had it did it improve after using the device and after your tinnitus disappeared completely?

A lot of people develop visual snow after onset of tinnitus.

 

[Tamara]

I had floaters at the same side and time of tinnitus. The floaters disappeared after two years, without treatment, and tinnitus is getting worse.

 

[spedgas]

Realistically I reckon it's going to be between 4 and 6 months before anyone actually gets hold of one.

Add another three months on top of that for people to get through the whole treatment.

 

[Clare B]

@Clare B
Hello, thank you for taking your time to answer the questions.

Did you have visual snow (like a film grain) or floaters (white or black squiggly lines) in your vision? If you had it did it improve after using the device and after your tinnitus disappeared completely?

A lot of people develop visual snow after onset of tinnitus.

That's no problem, it doesn't take too long to answer questions.

I did not have visual snow or floaters with my tinnitus. I hadn't heard of the connection with tinnitus before actually. I don't remember being asked about anything visual when I was on the trial and they asked us a lot of questions!

We did have our teeth and mouth examined on one visit and there was a physiotherapist there one day and he asked us to do a range of specific head and neck movements to see if there was any change in the tinnitus during the movements. I had no change during it.

 

[AliceW]

I received this answer to my email to Neuromod:

Dear Alice,

Thank you for your enquiry. Neuromod is completing clinical trials and working hard to bring our product to the market as soon as possible.

We would be happy to let you know once the product is available in your region. Please sign up by following the link below, so that you can be kept informed:
www.neuromoddevices.com/signup
Thank you for your interest.​

But I don't find the right page to sign up when I click on the link.

 

[Don Tinny]

Easy answer please.

What happens if someone uses the device and the relief lasts 2 or 3 months and the tinnitus comes back after that? Can you redo the treatment? Is there a rest period to guarantee safety and not damage the nerve?

 

[Clare B]

I received this answer to my email to Neuromod:

Dear Alice,

Thank you for your enquiry. Neuromod is completing clinical trials and working hard to bring our product to the market as soon as possible.

We would be happy to let you know once the product is available in your region. Please sign up by following the link below, so that you can be kept informed:
www.neuromoddevices.com/signup
Thank you for your interest.​

But I don't find the right page to sign up when I click on the link.

When you click on the link the page comes up, you just need to scroll down the page to find the information to sign up, simply fill in the boxes. I just tested it. Worked ok.

 

[Clare B]

Easy answer please.

What happens if someone uses the device and the relief lasts 2 or 3 months and the tinnitus comes back after that? Can you redo the treatment? Is there a rest period to guarantee safety and not damage the nerve?

I don't know about a rest period. As you know my tinnitus hasn't come back after a year but the audiologist from the trial told me to contact her if it ever did come back and she would help me. I found the treatment pretty gentle so I can't see why you couldn't redo the treatment. I don't know about the time between treatments though.

 

[Sam Bridge]

Maybe it's the kind of thing where we will just get an update one day in Jan/Feb to say it is now available at selected audiology shops in x location.

 

[AliceW]

@Clare B

Did you sometimes feel a sensation of warm ears and discomfort (like numb ears) before your treatment by the device when you had tinnitus? If yes, has this completely gone now?

And your sensitiveness to some noises that you described is now totally gone after the tinnitus went away?

I am trying to understand symptoms that are linked to tinnitus. Why did you have some sensitiveness to noises without having had some ear trauma from loud noises? With some people, I see a form of «hyperacusis» can exist associated to their tinnitus (but not with everybody who has tinnitus). But it is not the real hyperacusis that is independent to tinnitus.

Hope you are well. Thanks.

 

[Clare B]

@Clare B

Did you sometimes feel a sensation of warm ears and discomfort (like numb ears) before your treatment by the device when you had tinnitus? If yes, has this completely gone now?

And your sensitiveness to some noises that you described is now totally gone after the tinnitus went away?

I am trying to understand symptoms that are linked to tinnitus. Why did you have some sensitiveness to noises without having had some ear trauma from loud noises? With some people, I see a form of «hyperacusis» can exist associated to their tinnitus (but not with everybody who has tinnitus). But it is not the real hyperacusis that is independent to tinnitus.

Hope you are well. Thanks.

I did occasionally have warm ears but nothing really out of the ordinary. I didn't have any major discomfort or numb ears. I did have some pain in that ear every now and then but not all the time and it wasn't that bad.

My sensitiveness to some noises (in particular dishes hitting off each other was awful) thankfully went away with the tinnitus. I don't know why I had noise sensitivity without having had ear trauma from loud noises. I must be in that group that had hyperacusis associated to the tinnitus. I do not like being in noisy environments but I was like that before tinnitus but I think that might be more to do with crowds of people rather than just noise. I do not use ear phones (the ones that go in your ears) or any other ones anymore, just in case they may cause any damage.

I do remember that for a short period during treatment (a couple of days) my tinnitus did fluctuate, I still had the same tone, but it became faster (the beeps were more rapid) then I had a second higher pitch tone (more like a screech) as well as my usual tone. That did worry me a lot but thankfully it subsided after a day or two. I don't know why that happened during the treatment but it did all settle down in the end and as you know the results were good in my case.

The only other incident I can remember that had anything to do with my ears/balance, this was actually after the tinnitus had gone was an episode of vertigo, it lasted a week. I visited my doctor and they did blood tests which came back normal. They didn't really have any answers as to why I had it so I don't know why that happened. Thankfully it hasn't returned. Having experienced it though I now have immense empathy for people suffering from vertigo and god help them if they have tinnitus too, that would be a lot to deal with!

Not sure if it's relevant (I guess it might be because it's to do with your ears) but I do get very motion sick but then I always did so it's nothing new.

I'm good thanks, enjoying the last few days of the Christmas break! Happy New Year!

 

[annV]

The new MuteButton name?! Neuromod have filed this trademark on November 22, 2018!

https://euipo.europa.eu/eSearch/#details/trademarks/017988683

Etymology
From Latin lēnīre, present active infinitive of lēniō ("I soften, soothe; I mollify, assuage, appease, pacify").

 

[Marko Nakovski]

@Clare B Did you have pain in your ears when dishes were hitting each other or just discomfort?

 

[Clare B]

@Clare B Did you have pain in your ears when dishes were hitting each other or just discomfort?

I didn't have the pain at the same time, no. Just the noise was so unbearable, it was actually quite strange at the time thinking back on it. It doesn't bother me at all now.

 

[Johannes9090]

@Arseny

I also got visual snow 4 weeks after the onset of my tinnitus. First I got floaters and after that I got visual snow

 

[Fally]

This is going to sound like an odd question. Although it might have already been answered and I'm just not aware so apologies.

If this treatment does work and the tinnitus does subside and/or goes away, it's still not a cure, correct? So will our ears continue to be compromised?

I have zero plans to go to anywhere loud, but I am just wondering does this mean we can stand next to traffic without ear plugs and the tinnitus won't get worse or do we still need to be hyper vigilant until an actual cure comes along and cures the inside of our ear?

The last thing I want is to get complacent and have this come back worse.