Lenire — Bimodal Stimulation Treatment by Neuromod

[Eric N]

Has anyone postponed their appointments? If so, for how long?

 

[OverSoft]

Has anyone postponed their appointments? If so, for how long?

I've just had the invite for my first appointment. I passed on it.
My tinnitus is bothering me way less than when I first signed up for the treatment.

Judging by the results (which seem to be all over the place, from getting better to getting worse) I don't want to have the chance of it changing for the worse.

Next to that, it would require 4 to 6 trips to Dublin, a hotel stay, taxis, and the 2500 euros for the treatment itself.
If it was an 80% chance of fully "hearing nothing", I would do it, but for now, I'm riding this one out until we have a few different options to consider.

 

[El BUZZ]

I really hope those ones blessed with a mild tinnitus don't spread the concept of Lenire not being effective just because they can afford to live with their "noise".

That could hurt us severe cases A LOT.

 

[valeri]

I don't think that it can do harm at the decibel levels they program the device to. When using sound enrichment we also use sound to our benefit. Isn't this somewhat the same.

The loudness of what they play probably can't cause any harm but the frequency definitely can.

As someone who has reactive tinnitus I struggle to live with seemingly harmless (to others) sounds which, to me, are piercing through my brain (gas cooktop, fan, wind, rain...).

I listened to a Lenire sample someone left here and I could not stand 5 minutes of that shhhhhh noise if my life depended on it.

People who have this type of tinnitus will know what I'm talking about. This is the very reason why reactive tinnitus is hard to mask.

All these variables are making things more complicated and hard to treat.

 

[valeri]

I've just had the invite for my first appointment. I passed on it.
My tinnitus is bothering me way less than when I first signed up for the treatment.

Judging by the results (which seem to be all over the place, from getting better to getting worse) I don't want to have the chance of it changing for the worse.

Next to that, it would require 4 to 6 trips to Dublin, a hotel stay, taxis, and the 2500 euros for the treatment itself.
If it was an 80% chance of fully "hearing nothing", I would do it, but for now, I'm riding this one out until we have a few different options to consider.

Smart decision!

 

[Nonomat]

My appointment is on the 14th of April, yay. Past me would be thrilled but I know a little better now... I guess I'm still theoretically someone who would best respond.

The uncertainty of this condition is just the best...

I applied in late October/beginning of November just in case people might ask.

 

[MRItechssuck]

I've just had the invite for my first appointment. I passed on it.
My tinnitus is bothering me way less than when I first signed up for the treatment.

Judging by the results (which seem to be all over the place, from getting better to getting worse) I don't want to have the chance of it changing for the worse.

Next to that, it would require 4 to 6 trips to Dublin, a hotel stay, taxis, and the 2500 euros for the treatment itself.
If it was an 80% chance of fully "hearing nothing", I would do it, but for now, I'm riding this one out until we have a few different options to consider.

When did you submit your first request for an appointment?

 

[Phat Tuna]

The loudness of what they play probably can't cause any harm but the frequency definitely can.

As someone who has reactive tinnitus I struggle to live with seemingly harmless (to others) sounds which, to me, are piercing through my brain (gas cooktop, fan, wind, rain...).

I listened to a Lenire sample someone left here and I could not stand 5 minutes of that shhhhhh noise if my life depended on it.

People who have this type of tinnitus will know what I'm talking about. This is the very reason why reactive tinnitus is hard to mask.

All these variables are making things more complicated and hard to treat.

Sounds like you have hyperacusis.

 

[Lurius]

Smart decision!

No, bad decision!

 

[Bartoli]

The loudness of what they play probably can't cause any harm but the frequency definitely can.

As someone who has reactive tinnitus I struggle to live with seemingly harmless (to others) sounds which, to me, are piercing through my brain (gas cooktop, fan, wind, rain...).

I listened to a Lenire sample someone left here and I could not stand 5 minutes of that shhhhhh noise if my life depended on it.

People who have this type of tinnitus will know what I'm talking about. This is the very reason why reactive tinnitus is hard to mask.

All these variables are making things more complicated and hard to treat.

Yeah I feel you. I'm having that to some degree as well. Where did you find the sound sample? I think they can give you a program without the white noise as they ultimately did with Allan.

 

[LongWait]

Has anyone postponed their appointments? If so, for how long?

Thinking of doing so. I'm going to try and survive till Dr. Shore's device.

 

[UKBloke]

I really hope those ones blessed with a mild tinnitus don't spread the concept of Lenire not being effective just because they can afford to live with their "noise".

That could hurt us severe cases A LOT.

Hey, El Buzz

This kind of post by @OverSoft is EXACTLY the reason why I've been constantly making another point, albeit a related one, that it IS (contrary to Dr. Ross O'Neill's opinion) important to consider the time that a person has suffered with tinnitus before trying Lenire.

There is so much evidence out there about tinnitus symptoms receding to a "mild" or manageable state within a few years of onset that to use Lenire during this initial period and see positive results means we run the very real risk of having any reduction of perceived volume etc being credited to the device rather than the natural healing process.

I don't believe it's coincidence that OverSoft's symptoms have improved given that his onset was 2017. As difficult as it may be, I would encourage people to at least try and give their body time to work on the natural healing process first, before embarking on these new treatments. That being said, I know it's not easy.

 

[GlennS]

I really hope those ones blessed with a mild tinnitus don't spread the concept of Lenire not being effective just because they can afford to live with their "noise".
That could hurt us severe cases A LOT.

You're confusing people saying Lenire isn't effective with them saying it isn't worth it to them. Two different things. If Lenire were available without having to fly to Ireland it would change the calculus quite a bit. If the user reports gave more of an indication that there was a higher chance of improvement and no chance of disimprovement, it would also change the calculus quite a bit. I don't think anyone is unfairly maligning it.

Like in my case, even though I have been singled out as a big Lenire critic, if I had more reassurance that the disimprovement was unlikely and if so, temporary, I'd probably use it once it hits the US. But that's because I have the money to burn should it turn out to do nothing. Everyone's situation is different. But I definitely do not want to risk my tinnitus getting worse. If that were to happen I'd probably wind up no longer able to work and just disappearing into a dark hole of anti-depressants.

 

[GlennS]

No, bad decision!

Come on. I appreciate the early adopters lining up on the front-lines but we don't even have the formal results of the Tinnitus Talk user experience survey.

 

[threefirefour]

Come on. I appreciate the early adopters lining up on the front-lines but we don't even have the formal results of the Tinnitus Talk user experience survey.

If the official survey said that most people have a reduction using it, what would you say?

 

[OverSoft]

When did you submit your first request for an appointment?

The 23rd of September 2019. The appointment would've been on the 20th of February 2020.

No, bad decision!

Well, it's MY decision as it's MY tinnitus and MY money, so no, it's the best decision FOR ME...

You're confusing people saying Lenire isn't effective with them saying it isn't worth it to them. Two different things. If Lenire were available without having to fly to Ireland it would change the calculus quite a bit. If the user reports gave more of an indication that there was a higher chance of improvement and no chance of disimprovement, it would also change the calculus quite a bit. I don't think anyone is unfairly maligning it.

Like in my case, even though I have been singled out as a big Lenire critic, if I had more reassurance that the disimprovement was unlikely and if so, temporary, I'd probably use it once it hits the US. But that's because I have the money to burn should it turn out to do nothing. Everyone's situation is different. But I definitely do not want to risk my tinnitus getting worse. If that were to happen I'd probably wind up no longer able to work and just disappearing into a dark hole of anti-depressants.

Exactly this. I'm not saying the Lenire device is not working or not a good concept. I'm saying that at this point in time, it's not worth it for me. Also, the fact that it COULD cause the tinnitus to worsen is a real worry for me. And I can always do it in the future.

I really hope those ones blessed with a mild tinnitus don't spread the concept of Lenire not being effective just because they can afford to live with their "noise".

That could hurt us severe cases A LOT.

I'm not spreading "the concept of Lenire not being effective". I declined an appointment (which, believe it or not, is my decision...). It's not 100% effective and my tinnitus is not bad enough to be able to justify blowing €3.5k+ on the device, appointments and travel.

TBH, I never thought I would get attacked for MY decision to decline the (expensive) trial...

 

[BBakkers]

Just got an invite today for an appointment in April. Not sure if I will try the treatment. Unfortunately by that time we don't have the results of @PeterPan, right?

@LongWait, I have had the same mindset for the last week. I don't want to make my tinnitus worse, since I'm just beginning to handle my tinnitus after my spike in September 2019. And maybe rather save up the money to have a treatment that is a bit more effective in the future. I have somatic tinnitus and it's noise-induced.

I have a few more days to decide.

 

[Tinniger]

Sorry if I didn't notice. Has anyone already had an appointment in Hannover, Germany?

 

[EddieA]

Hello everyone.

I just wanted to say that I am going for my consultation on February 6.

I should get my device after I return sometime in March/April.

I am beyond excited to finally get one. It seems to be the only treatment that does anything for people.

I previously tried Levo (over priced garbage) and PRP (helped a bit with pain but it was temporary), but this one gives me some hope.

Even though the reviews have been mixed, it's a better prospect than no treatment at all in my opinion.

A potentially 20-30% (hopefully at the minimum) reduction and help with hyperacusis are good enough reasons for me to fly to Ireland from Boston 3-4 times.

I will provide updates or answer questions as needed.

Thanks!

 

[El BUZZ]

The 23rd of September 2019. The appointment would've been on the 20th of February 2020.

Well, it's MY decision as it's MY tinnitus and MY money, so no, it's the best decision FOR ME...

Exactly this. I'm not saying the Lenire device is not working or not a good concept. I'm saying that at this point in time, it's not worth it for me. Also, the fact that it COULD cause the tinnitus to worsen is a real worry for me. And I can always do it in the future.

I'm not spreading "the concept of Lenire not being effective". I declined an appointment (which, believe it or not, is my decision...). It's not 100% effective and my tinnitus is not bad enough to be able to justify blowing €3.5k+ on the device, appointments and travel.

TBH, I never thought I would get attacked for MY decision to decline the (expensive) trial...

You are not being attacked by me, mate. That is like people who have to check how their tinnitus is by plugging their ears. What a blessing. You don't need to plug them when it's severe. You wouldn't have any doubt about it if I was attacking you if I was doing it.

At this point I see it clear: People blessed with mild tinnitus are not going to spend the price tag in getting Lenire and are going to spread the word about Lenire being nothing but "snake oil".

People screwed with severe tinnitus are trying Lenire, whatever the cost and percentage of success.

Once again we SEVERE sufferers are going to be f#%ked thanks to you MILD "sufferers" claiming tinnitus is something you get used to, you habituate, you forget about, you carry on with your life and all those filthy slogans that have been forever associated with this condition and that have us against the wall and in the dark ages of research.

"Thanks".

 

[mrbrightside614]

You are not being attacked by me, mate. That is like people who have to check how their tinnitus is by plugging their ears. What a blessing. You don't need to plug them when it's severe. You wouldn't have any doubt about it if I was attacking you if I was doing it.

At this point I see it clear: People blessed with mild tinnitus are not going to spend the price tag in getting Lenire and are going to spread the word about Lenire being nothing but "snake oil".

People screwed with severe tinnitus are trying Lenire, whatever the cost and percentage of success.

Once again we SEVERE sufferers are going to be f#%ked thanks to you MILD "sufferers" claiming tinnitus is something you get used to, you habituate, you forget about, you carry on with your life and all those filthy slogans that have been forever associated with this condition and that have us against the wall and in the dark ages of research.

"Thanks".

I fail to see how the perceptions of the mild community would a) color their commentary on its effectiveness, and b) even if it did, have any meaningful impact on the availability and functionality of the device.

@Redknight had relatively mild tinnitus and Lenire basically cured him. I think Lenire has a better chance at helping the mild-moderate community than the severe community.

 

[F-u-T]

You are not being attacked by me, mate. That is like people who have to check how their tinnitus is by plugging their ears. What a blessing. You don't need to plug them when it's severe. You wouldn't have any doubt about it if I was attacking you if I was doing it.

At this point I see it clear: People blessed with mild tinnitus are not going to spend the price tag in getting Lenire and are going to spread the word about Lenire being nothing but "snake oil".

People screwed with severe tinnitus are trying Lenire, whatever the cost and percentage of success.

Once again we SEVERE sufferers are going to be f#%ked thanks to you MILD "sufferers" claiming tinnitus is something you get used to, you habituate, you forget about, you carry on with your life and all those filthy slogans that have been forever associated with this condition and that have us against the wall and in the dark ages of research.

"Thanks".

I don't think Neuromod is reading this forum and making business decisions based on speculation from people who haven't used their device. Not sure how any feedback positive or negative on this forum is going to have any bearing on the efficacy of Lenire. I think they are going to have all the business they can handle. I would say most people are certainly rooting for their success, but there is nothing wrong with questioning the effectiveness of this device.

 

[JohnK]

hopefully Dr. Susan Shore releases hers this year.

Bet you $2000 she doesn't, which by getting Lenire is basically what I'm doing.

 

[GlennS]

People blessed with mild tinnitus are not going to spend the price tag in getting Lenire and are going to spread the word about Lenire being nothing but "snake oil".

It isn't only people "blessed with mild tinnitus" who are concerned that the user-reports aren't living up to Neuromod's hype. You're blaming the messenger. And "Snake oil" is your term. I don't see others using it.

People screwed with severe tinnitus are trying Lenire, whatever the cost and percentage of success.

Some are and some (like me--I classify as severe) are waiting and seeing. And I don't think it's necessarily a wise move for those who are on a knife's edge to take such risks. Look what happened to Allan1967. Hindsight is 20/20. I can bet you some of these severe sufferers will regret it if they get stuck with a worsened condition (including you). Desperate people don't necessarily make the most prudent life-decisions.

Once again we SEVERE sufferers are going to be f#%ked thanks to you MILD "sufferers"

It's douchey behavior to pit one class of tinnitus sufferer against another. Please stop.

 

[Kam75]

I've been having tinnitus and hyperacusis for almost 1 year, and it is getting worse for absolutely no reason every two months.
I can't sleep even with Amitriptyline (Laroxyl) and Clonazepam (Rivotril).
I have multiple tones (cricket, high pitch, dental drill).

I have an appointment with Neuromod in May but I'm scared to go as I know someone who got trigeminal neuralgia since she started to use Lenire; which is considered as the most painful sickness on Earth.
I don't know what to do now. I'm scared of using Lenire because it can make tinnitus worse or might make us develop other sickness...

I don't know what to do with my life. I just turned 29, I don't want to live with this but I don't want to commit suicide.
I'm a very unlucky guy, I got tinnitus during a festival at which I was using custom hearing protection (-25 dB).

If I was that unlucky to get tinnitus while protecting my hearing, I think I could be one of those unlucky ones who have their tinnitus worsen from Lenire or develop another sickness from using it.

I'm very lost... should I wait to Susan Shore device wich is supposed to be safer? I'm currently waiting for an appoitment to have hearing aid in February. I pray that this will enable me to sleep at least.

 

[UHPTS]

Sorry if I didn't notice. Has anyone already had an appointment in Hannover, Germany?

I've applied in December, then again at the beginning of January. Aside of an automatic response I haven't received anything from them.

 

[Rafa03]

@Kam75

Trigeminal neuralgia from Lenire?
Now that's scary...

You've only had tinnitus & hyperacusis for over a year though, so you are still within the period of time where you could start getting better.

I have had both tinnitus & hyperacusis for about 13 years and have ups and downs (from very severe to mild).

Sending you strength & positive energy dude. Never lose hope.

 

[Autumnly]

Sorry if I didn't notice. Has anyone already had an appointment in Hannover, Germany?

I applied in December and got an automated email reply in January. They said they "will reply beginning from February". So I'm guessing no one has had an appointment or has been given one in Hannover yet.

I have an appointment with Neuromod in May but I'm scared to go as I know someone who got trigeminal neuralgia since she started to use Lenire; which is considered as the most painful sickness on Earth.

Do you have more information on this? Did you hear that from her directly?

 

[alex1975]

Just got my appointment for the end of April. It's a good thing I checked my junk email because it somehow made it there...

I've also replied asking to contact me if anything opens up earlier.

I originally signed up mid November 2019.

 

[El BUZZ]

I've been having tinnitus and hyperacusis for almost 1 year, and it is getting worse for absolutely no reason every two months.
I can't sleep even with Amitriptyline (Laroxyl) and Clonazepam (Rivotril).
I have multiple tones (cricket, high pitch, dental drill).

I have an appointment with Neuromod in May but I'm scared to go as I know someone who got trigeminal neuralgia since she started to use Lenire; which is considered as the most painful sickness on Earth.
I don't know what to do now. I'm scared of using Lenire because it can make tinnitus worse or might make us develop other sickness...

I don't know what to do with my life. I just turned 29, I don't want to live with this but I don't want to commit suicide.
I'm a very unlucky guy, I got tinnitus during a festival at which I was using custom hearing protection (-25 dB).

If I was that unlucky to get tinnitus while protecting my hearing, I think I could be one of those unlucky ones who have their tinnitus worsen from Lenire or develop another sickness from using it.

I'm very lost... should I wait to Susan Shore device wich is supposed to be safer? I'm currently waiting for an appoitment to have hearing aid in February. I pray that this will enable me to sleep at least.

Nasty stuff there, mate. Could you please back that info in any way? Trigeminal neuralgia could be triggered by several factors. I hope it's just a coincidence and I feel really sorry about her as that is a very hardcore condition.