Q&A: Tinnitus Hub Meets Neuromod (Lenire)

[RCP1]

Looks like I may have taught Ross O'Neill mathematics during his undergraduate degree. It's a small auld world! I was lecturing his course and he was studying at the same time for 4 years. Now that's a coincidence. Hope I gave him a good grounding in the mathematical arts!

In fact now I'm getting worried! Lol

 

[Alex Matyjasek]

Does this work for someone who hasn't got hearing loss?

 

[Manny]

It did sound that they are not really decided on that yet since they didn't say a price. Maybe their pricing model will be more Netflixy.

Well right now I've got an unlimited subscription to EEEEEEE and I wouldn't exactly mind replacing it...

 

[MarkLud]

Did the other two upcoming devices release more info about the % it helps or something? I'm not seeing anything that shows MuteButton is any more or less effective than the others, so where is everyone getting this from?

There's a member on here that is in one of the trials and has posted about his significant improvements (tinnitus is like 10-12 dB down, no longer needing to use noise when he sleeps) ... based on his experiences it just seems a bit more definitive than this. Of course, nothing's set in stone and we'll have to wait and see. I just think if MuteButton was producing 10-15 dB reductions in tinnitus it would be the absolute first thing they would bring up as a selling point.

 

[Jack Straw]

Does this work for someone who hasn't got hearing loss?

Yes.

 

[RichardGuy]

I probably missed it, but did they mention whether or not it affects acoustic trauma induced tinnitus or other types more than others?

I swear I watched every link I thought would be related.

 

[Krolo]

Well right now I've got an unlimited subscription to EEEEEEE and I wouldn't exactly mind replacing it...

Well I have had a subscription to EEEEEEE for 18 years but for some damn reason they gave me a bunch of freebies 4 months ago which i didn't ask for. And they refuse to take them back. Should have read the fine print.

 

[Krolo]

Does this work for someone who hasn't got hearing loss?

As long as you don't have profound hearing loss then it potentially works yes.

 

[jay777]

What's really good about Tinnitus Talk is that it provides tinnitus sufferers with a forum where they can openly exchange experiences - good and bad - without the marketing cr**. So if this device is as good as they say - and given the high level of interest in it - within around six months or so of launching there'll be plenty of members posting on here about how great it is. And if it isn't, well the opposite really...

What happened to all the members that tried LEVO?

They never report back.

 

[RCP1]

Can anybody think of a reason an individual couldn't use both devices? Neuromod to hold you over until the Shore device shows up. I'd like to give that a go.

That's what I am planning on....

 

[ruud1boy]

Thanks for the work. Is the price of the device unknown? I assume they do not intend to sell it in Latin America.

I'm fried if they sell it at 3,000 USD. The ticket for the concert that damaged me cost about 25/30 USD.

I guess it's one step at a time for these guys Don. They haven't started selling it in their home country yet, so there's a long road to travel before they get to worldwide approval / sales etc. Logically, you would assume that they want to sell as many of these devices as possible - given this is a commercial venture, they're looking to turn a profit at the end of the day, so it would be daft to not want to make it available in as many markets as possible. However, worldwide approval and whatnot is I imagine quite a big task.

$3k isn't much, if it works. I can't afford it, but I'll find the money somehow.

 

[ruud1boy]

I cannot watch the video without subtitles because of my hyperacusis. I apologize.

Does this work on hyperacusis?
Does it work on reactive tinnitus?
Can a Trigeminal Neuralgia patient use this device?

No need to apologise to anyone, but I'm curious as to why you can't watch the video? Is your hyperacusis so bad that any sound at all is a problem?

 

[Bam]

What happened to all the members that tried LEVO?

They never report back.

I did. Before Levo I was suicidal. After Levo I was suicidal and 4500 pounds poorer.

I can highly recommend The Tinnitus Clinic UK if you like getting f***ed by someone with a sympathetic expression.

 

[ruud1boy]

Another big question that I felt wasn't answered;

They say that the device is setup after what type of hearing loss you have, which is all fine.

But to what frequency range is this being made? For a huge amount of people, me included, my main tinnitus is a 10 kHz+ tone/hiss, but almost all hearing tests only go up to 8 kHz. If you (and your ENT, audiologist) don't have the profile data for your hearing loss above 8 kHz, how do you calibrate the machine for that loss?

I guess you have an audiologist do a specific hearing test for the purposes of calibrating the device, ie testing as high as possible - up to 10/12/14 kHz. They can test for what's called 'hidden hearing loss'. Human hearing at those frequencies is pretty redundant, so they don't normally test for it.

 

[JRC1]

@Steve and @Markku, thank you for a very professional and outstanding job of putting all this together.

The video lacks much detail regarding the Irish release date. I believe it just mentions "2019". Is there any more you can share on this matter? Is it still January? Are they purposefully withholding information on this matter? I assume the device will come to market through Irish healthcare providers and/or audiologists? If they are truly going to release in January, it seems like they would be prepared to offer more info at this point in time?

Thanks for your help.

 

[Steve]

I too wish to know more about importing this device into Canada as I don't live in the EU and I am afraid the wait is just going to be too long for this device to finally make its way to North America. I am willing to travel to Dublin but hope to be able to just buy the device and have an audiologist adjust it here.

This is just me talking so not any kind of official position. The way I read it is that they can't sell to a country where it isn't approved, so you would have to purchase it in a market where it is approved - be that Ireland, EU etc (as it is rolled out). Somebody will need to set it up, and I doubt you will be able to get that done outside of a country where it is approved.

I agree with a comment above that it will be prudent to wait until more can be gleaned from people who have used the device before travelling from another country - and also when the data is interrogated to find out more about potential non-responders.

 

[Steve]

You did a great job Steve, please don't take that comment as anything negative.

Not at all. It's an important question, just not one we can understand at this point in time.

Is there currently any trial still running? Sorry I couldn't catch that properly from the discussion.

Yes. I believe that it has just about completed the trial stage. They will then have to complete the follow up data, looking up to 12 months.

 

[Sam Bridge]

I hope Brexit will not delay this arriving in England?!

 

[Steve]

I think it will be a good idea to grab some of the questions that maybe haven't been addressed and we can set up a brief text Q&A with Neuromod? There are things that can't be discussed but there are some questions I've noticed that it will be nice to have answered.

On something that was raised earlier in this thread around body language. Being there between the takes I can answer this one.

There weren't any uncomfortable moments or parts where I felt anything was dodged around. The part of the video that was pointed out is most likely because we did have to redo it. Ross mentioned things from the trial still in progress, which they can't talk about. So we answered the question again, which may have felt a little less natural.

 

[Manny]

I think it will be a good idea to grab some of the questions that maybe haven't been addressed and we can set up a brief text Q&A with Neuromod? There are things that can't be discussed but there are some questions I've noticed that it will be nice to have answered.

Awesome, thank you once again!!

Did you want us to submit specifically for this, or were you just going to select questions out of this thread? I definitely have a question or two I would like answered.

 

[Don Tinny]

I think it will be a good idea to grab some of the questions that maybe haven't been addressed and we can set up a brief text Q&A with Neuromod? There are things that can't be discussed but there are some questions I've noticed that it will be nice to have answered.

Maybe it's not the most interesting question for the rest of the users, but I wonder if they want to reach the Latin American market.

 

[Stakovic]

Hi @attheedgeofscience, why are you not in this thread? not a beep

 

[Benoves]

I think it will be a good idea to grab some of the questions that maybe haven't been addressed and we can set up a brief text Q&A with Neuromod? There are things that can't be discussed but there are some questions I've noticed that it will be nice to have answered.

On something that was raised earlier in this thread around body language. Being there between the takes I can answer this one.

There weren't any uncomfortable moments or parts where I felt anything was dodged around. The part of the video that was pointed out is most likely because we did have to redo it. Ross mentioned things from the trial still in progress, which they can't talk about. So we answered the question again, which may have felt a little less natural.

That's good to know @Steve. I really believe Ross wants this to work. Creating such a device and organize such trials cost a LOT of money. They can't take another failure. He seems very confident about this one and regrets the earlier failure. He also wants to develop the device further so that's a good thing.

 

[TuxedoCat]

I just haven't seen a placebo-controlled trial yet, so I don't see the video's 80%/67% claim as well-substantiated. That's what I find quite unsettling!!

Hi Manny, Your points about placebo control are well taken and we both recognize the difficulty with identifying a placebo for this situation. Also since, as you point out, the TENT-A and TENT-A2 studies are both about selecting parameters, we may have not heard Neuromod's full Clinical Development Plan for the device. They may have other things planned that might give us some kind of a benchmark for comparative performance, even if the comparator is partially active. I see now that a text Q&A has been proposed, so let's ask about a controlled trial and see what they can tell us at this point in time. - TC

 

[SugarMagnolia]

So will you be renting this and then have to return it after the 12 weeks or once you buy it's yours?

For reasons of hygiene, I would hope you get a never-used device.

 

[SugarMagnolia]

How will this work for people who only have tinnitus in one ear?
Will they wear headphones and deliver the treatment to the undamaged ear as well as the damaged/tinnitus ear? What effect could this treatment have on the undamaged ear?

 

[Reinier]

Very very interesting that people with hyperacusis respond better to the treatment.
Almost makes me appreciate my hyperacusis more. Almost...

Made me wonder. After my acoustic incident my hyperacusis was really bad.
After almost 4 years my hyperacusis improved slowly.

Does this mean the chances of this device improving my tinnitus decreased?

 

[Bam]

I think it will be a good idea to grab some of the questions that maybe haven't been addressed and we can set up a brief text Q&A with Neuromod? There are things that can't be discussed but there are some questions I've noticed that it will be nice to have answered.

On something that was raised earlier in this thread around body language. Being there between the takes I can answer this one.

There weren't any uncomfortable moments or parts where I felt anything was dodged around. The part of the video that was pointed out is most likely because we did have to redo it. Ross mentioned things from the trial still in progress, which they can't talk about. So we answered the question again, which may have felt a little less natural.

Thanks for clarifying that.

@Steve I thought he came across really well but that moment set alarm bells off as someone who is already been burnt by tinnitus devices.

Great job by the way. I don't doubt this shit gets to you as well but you are a much needed measured cool head in the tinnitus world.

 

[Sam Bridge]

How will this work for people who only have tinnitus in one ear?
Will they wear headphones and deliver the treatment to the undamaged ear as well as the damaged/tinnitus ear? What effect could this treatment have on the undamaged ear?

Good question. I would assume they can control audio that it is only sent to the right/left ear speaker.

 

[Red]

No need to apologise to anyone, but I'm curious as to why you can't watch the video? Is your hyperacusis so bad that any sound at all is a problem?

Hyperacusis isn't just about loudness, it's about frequency too! This doesn't get talked about often. A voice from a speaker is not equivalent to a voice from someone standing next to you. The sound gets compressed into a different frequency.

It is exactly that sound that brings on the pain the most for me. I can stand right next to my central air unit and not be bothered. I don't watch online videos anymore because they usually aren't subtitled. Even the sound on the lowest volume puts me in pain.