Lenire — Bimodal Stimulation Treatment by Neuromod

[Liz Windsor]

@Liz Windsor

Hi Liz. I'm really pleased for you that you can go ahead with Lenire. I agree with you that it was a much shorter hearing test. Your hearing is probably better than mine, I'm 70! How did that happen!

I thought there were a lot of gaps too and perhaps pressed for my tinnitus noise, don't know.
It would be helpful to have a longer assessment time IMO so that more questions could be asked and answered more fully.

As you saw they are a small team at present and I suspect under pressure with the amount of time available.

We are supposed to try to reduce our attention to tinnitus but at the moment most of my thoughts are focused on EARS, HEARING LOSS and TINNITUS.

I've been to Dublin before and it's lovely. How about a Group meet for some Guinness and a bit of Irish dancing to take our minds off tinnitus!

Hi Eve,

So nice to hear from you. I'm down in the West Country as well. Not as far down as you though... I was so sorry to hear you can't go forward with the device but we don't know what will happen further down the line.

Fingers crossed it can maybe help you in the future, or something else may come along. I've never been very good with hearing tests because I really get confused and don't know if it's me that's beeping! Then I don't want to press the button in case I'm 'over-pressing' . It's such a subjective thing and one person's tinnitus which feels horrendous may be quite manageable for someone else. We only know how it affects us personally as it's not (currently anyway), something that can be seen except maybe on some sort of brain scan, but even then maybe not in detail.

I think some Guinness and an Irish dance sounds fun! Maybe we can have a 'West of England' rendezvous - all wearing earplugs!

Take care.
Liz

 

[linearb]

I know I won't believe product reviews that don't include photographic evidence that the poster has the device and went to all their follow up appointments and was compliant.

I realize no one is going to provide all that, but that's okay, we'll have longitudinal white papers soon enough, and the academic consensus will be a lot more reliable than random anecdotes.

 

[spedgas]

I don't know where you will fit. But what I can see here is one person has been rejected because of having moderate hearing loss. My hearing is declining at 4 kHz and at 8 kHz is -70 dB.

How can I stay positive in this case?

Sure, it may not work for YOU. It may not work on me. It may not work on any random person for any random reason. Interpret what you've read here any way you want as it applies to you. Just because you think it won't work on you is no reason to categorically state it won't work on large swaths of people who don't fit in your preconceived notions of beneficial groups.

 

[GlennS]

I don't know where you will fit. But what I can see here is one person has been rejected because of having moderate hearing loss. My hearing is declining at 4 kHz and at 8 kHz is -70 dB. How can I stay positive in this case?

To be perfectly honest, if I were in your shoes I'd be genuinely concerned about being denied treatment. That being said, I don't know the average hearing profile of tinnitus sufferers so it's hard to make a sweeping statement as to how broadly Lenire will be able to help. Not that long ago I was freaking out over the prospect of them denying people who had tinnitus beyond a certain number of years but it looks like that criteria was only for the trials, so I can relate to the anxiety.

As I said earlier, though, if they erred on the side of giving the device out, it may wind up doing nothing for your tinnitus if you can't hear in certain frequency bands. If the device is dependent on having a certain amount of hearing, you can't fault Neuromod for that. It's just down to the scientific principle of the treatment and nobody's fault. And the same would be true of Susan Shore or Minnesota. If they wind up giving those devices out more liberally, I doubt they'd work any better if they're all dependent on a minimum amount of extant hearing.

 

[Redknight]

Come on guys! Keep flooding the thread with posts created from unsubstantiated paranoia highly prone to create even more unfounded paranoia. Why being cold minded, sober and patient if we can throw up all our preposterous assumptions here for free?

If we had to pay to post here this thread would be much cleaner, sane and useful.

Ok, on the subject of theories and conjecture. What does everyone think about how long Lenire should be used for?

Neuromod says 2x 30 minutes, but I think we'll quickly see users testing longer times and more frequent uses.

Also, Neuromod have no limit on how long you continue to use the device. How long do you think you would use it before giving up?

 

[BrStan@]

To be perfectly honest, if I were in your shoes I'd be genuinely concerned about being denied treatment. That being said, I don't know the average hearing profile of tinnitus sufferers so it's hard to make a sweeping statement as to how broadly Lenire will be able to help. Not that long ago I was freaking out over the prospect of them denying people who had tinnitus beyond a certain number of years but it looks like that criteria was only for the trials, so I can relate to the anxiety.

As I said earlier, though, if they erred on the side of giving the device out, it may wind up doing nothing for your tinnitus if you can't hear in certain frequency bands. If the device is dependent on having a certain amount of hearing, you can't fault Neuromod for that. It's just down to the scientific principle of the treatment and nobody's fault. And the same would be true of Susan Shore or Minnesota. If they wind up giving those devices out more liberally, I doubt they'd work any better if they're all dependent on a minimum amount of extant hearing.

Yes, it's not only me in that situation, there are so many people out there in my shoes.

And personally speaking, I no longer have any hope of being helped by Lenire. My tinnitus is very bad. I cannot listen to white noise even at 20 dB.

 

[Bndsmheowqhe]

Yes, it's not only me in that situation, there are so many people out there in my shoes.

And personally speaking, I no longer have any hope of being helped by Lenire. My tinnitus is very bad. I cannot listen to white noise even at 20 dB.

At least we'll eventually have FX-322 which appears to be the real deal. A few years from now we could all be looking back at tinnitus as a distant memory.

 

[newbieT]

Yes, it's not only me in that situation, there are so many people out there in my shoes.

And personally speaking, I no longer have any hope of being helped by Lenire. My tinnitus is very bad. I cannot listen to white noise even at 20 dB.

How does someone come to that conclusion when the device hasn't even been field tested yet?

Also this is the first iteration of the device, once they collect enough data and feedback, I'm sure they will improve the device. Just like any product, even the first iPhone wasn't very good.

 

[ruud1boy]

I don't know where you will fit. But what I can see here is one person has been rejected because of having moderate hearing loss. My hearing is declining at 4 kHz and at 8 kHz is -70 dB.
How can I stay positive in this case?

Stop being a drama queen?

One person has been rejected, ostensibly due to her hearing impairment, but more likely due to the fact that she has a hearing impairment & tinnitus but isn't currently utilising 'sound therapy' to manage her tinnitus.

How many other people have been accepted with moderate hearing loss? It'll be a damn sure more than one I'm sure.

 

[Agrajag364]

My tinnitus is way above this level but wearing hearing aids, although they can't be programmed that high, do kind of 'smooth' the sharpest edges of tinnitus, probably by bringing in other surrounding frequencies. I don't pretend to understand all the reasons why. In no way do they eliminate or massively reduce the tinnitus, just take the edge off it a

Do the hearing aids take the edge off the tinnitus only when you are wearing them, or at other times too?

 

[BrStan@]

Stop being a drama queen?

One person has been rejected, ostensibly due to her hearing impairment, but more likely due to the fact that she has a hearing impairment & tinnitus but isn't currently utilising 'sound therapy' to manage her tinnitus.

How many other people have been accepted with moderate hearing loss? It'll be a damn sure more than one I'm sure.

Time will tell who is right and who is wrong.

 

[Nanny chocolate]

It's documented that Neuromod will first rule out other methods of trying to reduce tinnitus. It's most probably that Caroline was diagnosing that hearing aids hadn't been tried by me.

If you can travel and have the finances then their assessment can be a positive. You won't know if you don't go.

I was told that other people had not been taken forward but I couldn't be told why obviously.

I was refused but there is no reason why this should set a precedent for others of you who also have hearing loss. My experience of refusal doesn't have to be yours. HOLD ON TO THAT.

(Yes I'm a Counselling Therapist!)

 

[Liz Windsor]

Do the hearing aids take the edge off the tinnitus only when you are wearing them, or at other times too?

Hi there.

In my experience I only get a reduction in the tinnitus whilst I'm actually wearing the hearing aids. As soon as I take them out the volume of the tinnitus increases hugely. I only don't wear them in the shower, or when I'm trying to sleep (and I've even tried sleeping with them but it's not comfortable).

Now, after several years I'm finding them really uncomfortable a lot of the time, but when I try and give myself a break from them it's very difficult and I end up putting them back in (like someone trying and failing to give up smoking or something!).. They don't have any kind of 'residual inhibition' effect for me. Not to say they don't have for someone else. Also, bear in mind that I have NHS hearing aids. Not terrible but not the most efficient possibly as it depends who programs them on the day. I was told once by a private (ex NHS) audiologist that they could make them work on a more effective individual basis but often don't have the time, or maybe the inclination, to do that.

I believe @carlover has more success with his hearing aids at night-time, which is the opposite to me. Just shows how we're all different. I'm grateful to have them but they can't be programmed to my tinnitus pitch which is very high so probably why they are of limited, but some, benefit.

Hope that helps.
Liz

 

[ruud1boy]

Time will tell who is right and who is wrong.

And you'd love it if you we're 'right', wouldn't you?

Would you rather Neuromod and their ilk decided against trying to find effective tinnitus treatments? Would that make it more enjoyable for you to say 'I told you so'?

I really hope Lenire works for me - I'm bracing myself for the possibility / probability that it won't, but to say at this point 'aah fuck it, it's nonsense' is... brainless fuckwittery.

 

[Piney]

I wonder if you can use the device with hearing aids in? Or was this answer given?

 

[Hayls32]

I'm really sorry, this thread moves so quickly... Did I see someone say that the device helped with visual snow? If so can you message me, I can't find anything online about any kind of treatment helping. Thanks.

 

[john paul]

That's crazy that volumes and tongue tip intensity can be adjusted.

Some huge variations of treatment delivery surely.

 

[PeterPan]

Hello,

Just a quick update on the Lenire User Experience Group survey.

• We have now had 127 requests for membership, with 31 providing dates for Neuromod appointments (almost all within the 2019 calendar year).
• We have fired off eight user experience survey links to members who have advised early appointments, and have received five responses to the first part of the survey (baseline information on tinnitus just prior to the Device Fitting stage).
• Another seven links will be sent in the next week or so.

Thanks very much for the members' help in this project!

If you are purchasing a Lenire device soon and haven't yet signed-up we would be very grateful if you could do so, as the results will be very useful to the wider tinnitus community.

Also, if you have signed up but have not provided dates if these are available, please send them through (you can send a PM or respond to the email I sent on this subject).

PeterPan

 

[Manny]

Hello,

Just a quick update on the Lenire User Experience Group survey.

• We have now had 127 requests for membership, with 31 providing dates for Neuromod appointments (almost all within the 2019 calendar year).
• We have fired off eight user experience survey links to members who have advised early appointments, and have received five responses to the first part of the survey (baseline information on tinnitus just prior to the Device Fitting stage).
• Another seven links will be sent in the next week or so.

Thanks very much for the members' help in this project!

If you are purchasing a Lenire device soon and haven't yet signed-up we would be very grateful if you could do so, as the results will be very useful to the wider tinnitus community.

Also, if you have signed up but have not provided dates if these are available, please send them through (you can send a PM or respond to the email I sent on this subject).

PeterPan

Wow, you are good. Thank you so much for what you are doing on the behalf of our community.

 

[threefirefour]

I'm really sorry, this thread moves so quickly... Did I see someone say that the device helped with visual snow? If so can you message me, I can't find anything online about any kind of treatment helping. Thanks.

I was talking to a user who was part of a very similar experiment. He said it reduced his VS.

 

[ruud1boy]

I wonder if you can use the device with hearing aids in? Or was this answer given?

AFAIK the device is to be used without your hearing aids in. That's why they test your hearing, to see how high they need to crank up the sound for you to hear it. I guess also wearing hearing aids whilst using the device would also introduce another layer of variables to contend with.

 

[Jack Straw]

So where is @Allan1967? He posted he was going in and disappeared...

Did the boogie man get him?! (This is a joke...)

 

[GlennS]

So where is @Allan1967? He posted he was going in and disappeared...
Did the boogie man get him?!

Jack, sometimes it seems if someone breaks away from the internet for more than a nanosecond you want to shame-him/her with memes and put out a missing-person report on him. Not everyone is camping out in this thread 24/7. I can't speak for Allan, but if I were to report that I went in and you started writing things towards me like this I'd feel it's rude and frankly a little stalkerish. If we make a commitment to report our experiences we will... but it will be on our schedule, not yours.

 

[Jack Straw]

Jack, sometimes it seems if someone breaks away from the internet for more than a nanosecond you want to shame-him/her with memes and put out a missing-person report on him. Not everyone is camping out in this thread 24/7. I can't speak for Allan, but if I were to report that I went in and you started writing things towards me like this I'd feel it's rude and frankly a little stalkerish. If we make a commitment to report our experiences we will... but it will be on our schedule, not yours.

It's been two days...

I think it's reasonable after two days to ask about the status of someone and their experience with Neuromod. Especially someone who is usually as active as @Allan1967 is.

If it was Joe Shmo, who only visited the forum once a month I wouldn't bother or care. But Alan is an active member who knows how desperate we are for information.

If I were to get the device, I would be giving constant updates and answering any and all questions. If I didn't, I would expect people to give me a hard time.

There is a high demand for information right now because it just came out. Two months from now, we don't have the impatient need for information.

Also, if you publicly announce you are participating and have the device, it isn't unreasonable for people to ask for an update a couple days after you got it....

 

[Candy]

Not sure that after two days there will be anything to report, we even got a selfie x

 

[Chinmoku]

Yes, it's not only me in that situation, there are so many people out there in my shoes.

And personally speaking, I no longer have any hope of being helped by Lenire. My tinnitus is very bad. I cannot listen to white noise even at 20 dB.

As I mentioned earlier, the plot with the results of some trials shows the device has been used by two people with a catastrophic THI of 90. This shows they have not ruled out catastrophic tinnitus users, at least in the trials.

 

[Allan1967]

Sorry guys... I only started using it yesterday and I've been quite wiped out by my 24 hour jaunt with no sleep, which has been catching up with me this week, plus work, two unruly kids and my wife away on a course.

I'll write something up over the weekend.

In the meantime here's a photo of a nifty flight case I bought for it.

 

[acute]

For all who are talking about Lenire's exclusion criteria. I think the decision of if someone is eligibile for the treatment will be quite personalized. No strict patterns.

I think factors such as age also matter, because I suppose that "regenerating" an organism or an "older" brain by neuroplasticity will be more difficult than it is with a younger brain. I guess so?

At least that's what my GP and several ENTs told to me. I know that most of them are useless but I guess the "young body heals better" statement applies to any field of medicine or any wound.

 

[Candy]

They showed me white headphones, not that it matters but I prefer my gadgets to match...

 

[Sevv]

Hello,

Just a quick update on the Lenire User Experience Group survey.

• We have now had 127 requests for membership, with 31 providing dates for Neuromod appointments (almost all within the 2019 calendar year).
• We have fired off eight user experience survey links to members who have advised early appointments, and have received five responses to the first part of the survey (baseline information on tinnitus just prior to the Device Fitting stage).
• Another seven links will be sent in the next week or so.

Thanks very much for the members' help in this project!

If you are purchasing a Lenire device soon and haven't yet signed-up we would be very grateful if you could do so, as the results will be very useful to the wider tinnitus community.

Also, if you have signed up but have not provided dates if these are available, please send them through (you can send a PM or respond to the email I sent on this subject).

PeterPan

Would be great if 1-2 questions on visual snow were included in your survey!