Lenire — Bimodal Stimulation Treatment by Neuromod

[EDDTEKK]

The longer this thread gets the more doubtful I get... Sorry but so far there's not a lot of tangible things reported, it seems.

Hopefully Lenire's not another scam crashing our hope for relief

 

[Dizzyhead888]

Which is why I'm surprised so many people are already handing over cash lol. Apart from a hypothesis and a few anecdotal reports it may be as clinically beneficial as ear candling!

There are clinical trials with over 500 patients that showed a clinically significant reduction in two thirds of the population.

That said, there is a chance that you will get a reduction with this device and a chance that you don't.
Also, there are anecdotal reports that it reduces tinnitus.

Given the above, many tinnitus sufferers are happy to spend 2500 euros to have the CHANCE of a reduction, regardless whether it may or may not work for you, some people believe 2500 euros is worth this experiment.

If you have mild tinnitus or are struggling financially, then it's best that you wait to get more anecdotal feedback from Tinnitus Talk members.

 

[Mentos]

Which is why I'm surprised so many people are already handing over cash lol. Apart from a hypothesis and a few anecdotal reports it may be as clinically beneficial as ear candling!

How would we know whether it works if it was not for the people who actually bought the device?

Someone needs to start testing it, I go in September. It's not big money anyway.

 

[Demigod]

So @BigNick, @Redknight, and @drcross have had their tinnitus improved with Lenire even at this early stage...

@ruud1boy, @Cojackb, @TinMan2019 and @Liz Windsor have started but not sure of outcome yet...

@Allan1967 is experiencing a spike so far but we're all praying it's temporary and you go on to improve.

Who did I miss?

Is it a coincidence that all the members that have seen improvement already have had tinnitus only for a relatively short period of time? Can it be that the time that someone has been having tinnitus plays a role in the outcome of the treatment? And I also remember that an exclusion criterion for the participation of the ongoing tests for the Dr. Shore's device was the duration of tinnitus (onset between 6 and 12 months) which excluded people with long-lasting tinnitus (was not the case for Lenire). Why could that be?

I do not want jump to any conclusion since my knowledge of the subject is that of a layman, I am just asking fellow members that are more knowledgeable since I follow the relevant topics but do not remember having seen this subject being addressed.

 

[ruud1boy]

Which is why I'm surprised so many people are already handing over cash lol. Apart from a hypothesis and a few anecdotal reports it may be as clinically beneficial as ear candling!

Someone has to jump first...

 

[Dizzyhead888]

Yup. Budapest-Dublin, 2 hour flight. Not great, not terrible, in the immortal words of Anatoly Dyatlov. Unfortunately I'm leaving the next day so even if they gave me the device in 1 week I would still have to fly back.

When's your appointment? Mine's at 15:15 Irish time, so maybe see you there?

Well, we're early adopters. If the treatment doesn't work, I lose my money. If it does work, I will get to enjoy my first quiet Christmas in this very year, as opposed to getting on a waitlist that probably stretches until the end of 2020 by now.

Too bad. I am Sept 13.

 

[Agrajag364]

Is it a coincidence that all the members that have seen improvement already have had tinnitus only for a relatively short period of time? Can it be that the time that someone has been having tinnitus plays a role in the outcome of the treatment? And I also remember that an exclusion criterion for the participation of the ongoing tests for the Dr. Shore's device was the duration of tinnitus (onset between 6 and 12 months) which excluded people with long-lasting tinnitus (was not the case for Lenire). Why could that be?

I do not want jump to any conclusion since my knowledge of the subject is that of a layman, I am just asking fellow members that are more knowledgeable since I follow the relevant topics but do not remember having seen this subject being addressed.

I wondered about that. The view expressed in some academic papers seems to be tinnitus is far more likely to remit spontaneously in the first 2 years, particularly the first six months. So it would make sense if tinnitus of shorter duration was more malleable to treatment. However that is not to say that it won't work on anybody with tinnitus of a longer duration. The sample sizes too small to draw a meaningful conclusion as yet!

 

[Agrajag364]

Someone has to jump first...

I'm grateful to the early jumpers.

 

[Agrajag364]

There are clinical trials with over 500 patients that showed a clinically significant reduction in two thirds of the population

Only really viable to say that once those trials have passed peer review and the results (two thirds reduction) accepted as part of the formal academic literature. It's been said before, but it is worth saying again given how many people are considering this and the cost.

I'm still reassured by the size and existence of the trials. 500 is really big for a new device in Europe.

 

[jel]

How would we know whether it works if it was not for the people who actually bought the device?

Someone needs to start testing it, I go in September. It's not big money anyway.

Yo Mentos, are you going to Ireland in September?

Because I saw you mention another clinic named Brai3n in Gent, Belgium.

Thanks.

 

[Pleasure_Paulie]

How would we know whether it works if it was not for the people who actually bought the device?

The clinical trials... like all medicines and devices. They can give you an ideal of the correctly indicated patient and the probability of a clinically significant improvement.

 

[Krolo]

Yup. Budapest-Dublin, 2 hour flight. Not great, not terrible, in the immortal words of Anatoly Dyatlov. Unfortunately I'm leaving the next day so even if they gave me the device in 1 week I would still have to fly back.


When's your appointment? Mine's at 15:15 Irish time, so maybe see you there?

Mine is at 15:00 so will surely be there at the same time!

 

[valeri]

Amen to that Brutha!

Good to see you again! Hope you're still doing ok!

 

[valeri]

@PeterPan not sure if you are still the one collecting data from Lenire users but I've got a suggestion: is it possible, for each user, to include a short history including for how long he/she has had tinnitus, any hyperacusis, and the tones they hear...

I think this would be beneficial for anyone following the thread.
Something similar was done for Retigabine (Trobalt) trial.

Thanks!

 

[Markku]

Hey @valeri

@PeterPan has been pinged, but I'm pretty sure we're asking most of that, we have a nice long format for the pre-treatment part of the survey.

One thing that isn't looking too good is users' commitment to the follow-up surveys (which is obviously crucial to get any useful information at all from the endeavor).

So far nobody has filled their 6-week surveys even though we've got some in that stage.

There are also a few very active Tinnitus Talk members posting in this thread who have gotten the device or is about to get one, but haven't signed up to take part in the User Experience Group at all. It would be much appreciated if you guys joined the group. The surveys provide us with the means to collect your experiences in a more structured way - in addition to that you are most welcome to share your experiences in free form format in the User Experiences & Reviews thread.

I would really encourage people to fill the surveys as instructed, this is a community project and needs the Lenire users' commitment. I also want to remind those taking part in the User Experience Group that no personal information will be shared with anyone, and Neuromod has not objected to our members participating in this community project.

Basically the only thing is that it will take a few minutes of the user's time every once in a while. Please do this for the rest of people who are eager to hear about your experiences in a well-formatted manner (which our surveys will deliver - we've really put a lot of time and energy into this project).

Thanks peeps!

 

[PeterPan]

The longer this thread gets the more doubtful I get... Sorry but so far there's not a lot of tangible things reported, it seems.

We're collecting information from users in the User Experience Group so hopefully we will get something a bit more tangible soon!

 

[valeri]

Hey @valeri

@PeterPan has been pinged, but I'm pretty sure we're asking most of that, we have a nice long format for the pre-treatment part of the survey.

One thing that isn't looking too good is users' commitment to the follow-up surveys (which is obviously crucial to get any useful information at all from the endeavor).

So far nobody has filled their 6-week surveys even though we've got some in that stage.

There are also a few very active Tinnitus Talk members posting in this thread who have gotten the device or is about to get one, but haven't signed up to take part in the User Experience Group at all. It would be much appreciated if you guys joined the group. The surveys provide us with the means to collect your experiences in a more structured way - in addition to that you are most welcome to share your experiences in free form format in the User Experiences & Reviews thread.

I would really encourage people to fill the surveys as instructed, this is a community project and needs the Lenire users' commitment. I also want to remind those taking part in the User Experience Group that no personal information will be shared with anyone, and Neuromod has not objected to our members participating in this community project.

Basically the only thing is that it will take a few minutes of the user's time every once in a while. Please do this for the rest of people who are eager to hear about your experiences in a well-formatted manner (which our surveys will deliver - we've really put a lot of time and energy into this project).

Thanks peeps!

Good ol' tinnitus community lethargy hey

 

[PeterPan]

@PeterPan not sure if you are still the one collecting data from Lenire users but I've got a suggestion: is it possible, for each user, to include a short history including for how long he/she has had tinnitus, any hyperacusis, and the tones they hear...

I think this would be beneficial for anyone following the thread.
Something similar was done for Retigabine (Trobalt) trial.

Thanks!

Hello Valeri,

Yes I am still collecting the data and we are going strong! Six week appointments are just starting. If you have signed up for the experience group, please remember to do your 6 week report when it falls due as this will provide information on how Tinnitus has changed from baseline. You can use the original link that was sent to you and the survey will start from where you left off. If you have purchases a device, please signup using the banner at the top of the page if you wish to participate.

We are collecting a wealth of information about Tinnitus already during the survey, and that includes information on how long the person has had Tinnitus, the severity of hyperacusis and also the types of tones they hear! In fact, the pre-treatment information we are getting is of interest in its own right I think!

Here is some information on TFI (a measure of the severity of Tinnitus) against Pitch, using information collected to date. In general, the higher the frequency, the higher the TFI,

1 = Very High, 2 - High, 3 - Medium, 4 = Low.

And here is some information on TFI versus intermittency:

1 - I do not hear it, 2 = I hear it occasionally, 3 = I hear it about 50% of the time,, 4 = I hear it most of the time, 5 = I hear it all the time.

And TFI versus hyperacusis:

1 = None, 2 = Mild, 3 = Moderate, 4 = Severe.

We should be accumulating information on post-treatment soon and we should be able to see if the effect seen in the trials is replicated here. Our sample size should be reasonable, if we all remember to do our surveys!

As more information becomes available, we will publish this information here on Tinnitus Talk/Tinnitus Hub for all to see.

 

[Agrajag364]

Hello Valeri,

Yes I am still collecting the data and we are going strong! Six week appointments are just starting. If you have signed up for the experience group, please remember to do your 6 week report when it falls due as this will provide information on how Tinnitus has changed from baseline. You can use the original link that was sent to you and the survey will start from where you left off. If you have purchases a device, please signup using the banner at the top of the page if you wish to participate.

We are collecting a wealth of information about Tinnitus already during the survey, and that includes information on how long the person has had Tinnitus, the severity of hyperacusis and also the types of tones they hear! In fact, the pre-treatment information we are getting is of interest in its own right I think!

Here is some information on TFI (a measure of the severity of Tinnitus) against Pitch, using information collected to date. In general, the higher the frequency, the higher the TFI,

View attachment 31735

1 = Very High, 2 - High, 3 - Medium, 4 = Low.

And here is some information on TFI versus intermittency:


View attachment 31736


1 - I do not hear it, 2 = I hear it occasionally, 3 = I hear it about 50% of the time,, 4 = I hear it most of the time, 5 = I hear it all the time.

And TFI versus hyperacusis:

View attachment 31737


1 = None, 2 = Mild, 3 = Moderate, 4 = Severe.

We should be accumulating information on post-treatment soon and we should be able to see if the effect seen in the trials is replicated here. Our sample size should be reasonable, if we all remember to do our surveys!

As more information becomes available, we will publish this information here on Tinnitus Talk/Tinnitus Hub for all to see.

This is amazing.

 

[Mentos]

Yo Mentos, are you going to Ireland in September?

Because I saw you mention another clinic named Brai3n in Gent, Belgium.

Thanks.

I gave up on Brai3n and decided to try Lenire.

September 27th is my date.

 

[zoid]

Good work! I really appreciate it. Still in doubt if I should apply to the clinic in Dublin or wait for clinics closer to home (The Netherlands).

I don't want to fill up an appointment slot if I'm going to cancel it anyway.

 

[JohnAdams]

Hello Valeri,

Yes I am still collecting the data and we are going strong! Six week appointments are just starting. If you have signed up for the experience group, please remember to do your 6 week report when it falls due as this will provide information on how Tinnitus has changed from baseline. You can use the original link that was sent to you and the survey will start from where you left off. If you have purchases a device, please signup using the banner at the top of the page if you wish to participate.

We are collecting a wealth of information about Tinnitus already during the survey, and that includes information on how long the person has had Tinnitus, the severity of hyperacusis and also the types of tones they hear! In fact, the pre-treatment information we are getting is of interest in its own right I think!

Here is some information on TFI (a measure of the severity of Tinnitus) against Pitch, using information collected to date. In general, the higher the frequency, the higher the TFI,

View attachment 31735

1 = Very High, 2 - High, 3 - Medium, 4 = Low.

And here is some information on TFI versus intermittency:


View attachment 31736


1 - I do not hear it, 2 = I hear it occasionally, 3 = I hear it about 50% of the time,, 4 = I hear it most of the time, 5 = I hear it all the time.

And TFI versus hyperacusis:

View attachment 31737


1 = None, 2 = Mild, 3 = Moderate, 4 = Severe.

We should be accumulating information on post-treatment soon and we should be able to see if the effect seen in the trials is replicated here. Our sample size should be reasonable, if we all remember to do our surveys!

As more information becomes available, we will publish this information here on Tinnitus Talk/Tinnitus Hub for all to see.

Heat exhaustion. I have never seen that one before. Will you elaborate for me how your tinnitus started and how you connected it with that?

 

[hans799]

@PeterPan @Markku Perhaps you could incentivize Lenire User Experience Group members by granting users who have enrolled a badge, like the "Benefactor", "Hall of Fame" etc badges.

• If someone's actively posting about their Lenire experiences but doesn't have the badge, there could be some nice peer pressure for them to enroll.
• If someone's already enrolled, the badge act as some motivation to keep contributing ("hey, I have a duty to fulfill").
• Finally, it can lend weight to these people's opinions on Lenire - after all, we've committed serious money and time to try it.

 

[Mentos]

Good work! I really appreciate it. Still in doubt if I should apply to the clinic in Dublin or wait for clinics closer to home (The Netherlands).

I don't want to fill up an appointment slot if I'm going to cancel it anyway.

Brai3n in Gent should offer Lenire as of January 2019.

 

[kelpiemsp]

Hello Valeri,

Yes I am still collecting the data and we are going strong! Six week appointments are just starting. If you have signed up for the experience group, please remember to do your 6 week report when it falls due as this will provide information on how Tinnitus has changed from baseline. You can use the original link that was sent to you and the survey will start from where you left off. If you have purchases a device, please signup using the banner at the top of the page if you wish to participate.

We are collecting a wealth of information about Tinnitus already during the survey, and that includes information on how long the person has had Tinnitus, the severity of hyperacusis and also the types of tones they hear! In fact, the pre-treatment information we are getting is of interest in its own right I think!

Here is some information on TFI (a measure of the severity of Tinnitus) against Pitch, using information collected to date. In general, the higher the frequency, the higher the TFI,

View attachment 31735

1 = Very High, 2 - High, 3 - Medium, 4 = Low.

And here is some information on TFI versus intermittency:


View attachment 31736


1 - I do not hear it, 2 = I hear it occasionally, 3 = I hear it about 50% of the time,, 4 = I hear it most of the time, 5 = I hear it all the time.

And TFI versus hyperacusis:

View attachment 31737


1 = None, 2 = Mild, 3 = Moderate, 4 = Severe.

We should be accumulating information on post-treatment soon and we should be able to see if the effect seen in the trials is replicated here. Our sample size should be reasonable, if we all remember to do our surveys!

As more information becomes available, we will publish this information here on Tinnitus Talk/Tinnitus Hub for all to see.

I love what you're doing but... Have you thought of using an anova instead? Your x axis is not a continuous variable. Just a thought.

 

[Ringeee]

Here is an update of my Lenire experience:

I have been using Lenire for about 1 month. Doing two 30 minute sessions per day is not easy, so I rather try to do a 1 hour session at a time.

After each session I have an increase of my tinnitus. Sometimes on good days I have to motivate myself to do my session because I'm afraid of my tinnitus getting worse. I have missed sessions. For the past few days, no matter if it's a good or bad tinnitus day, I have been doing my sessions.

In general the increase in my tinnitus after a session can last from a few minutes to a few hours.

Regarding the evolution of my tinnitus it is quite difficult to say if I feel a benefit. My tinnitus is very variable (it fluctuates). My tinnitus used to be 8/10 on bad days and it seems to have dropped to something around 6/10 when I'm having a bad day. So more manageable but still very bad compared to my good days where my tinnitus can be 2-3/10.

I'm hoping that the improvement comes from the Lenire treatment.

I will keep you updated.

Good luck to all.

Thanks for sharing your experience jacob21. Can you share what caused your tinnitus? Also, are you saying the Lenire helped reduced it from an 8 to an 6?

 

[PeterPan]

I love what you're doing but... Have you thought of using an anova instead? Your x axis is not a continuous variable. Just a thought.

Hi kelpiemsp, I am not a stats expert (although I do have a very good background in maths!).

If you have these skills, would you like to contribute?

 

[PeterPan]

@PeterPan @Markku Perhaps you could incentivize Lenire User Experience Group members by granting users who have enrolled a badge, like the "Benefactor", "Hall of Fame" etc badges.

• If someone's actively posting about their Lenire experiences but doesn't have the badge, there could be some nice peer pressure for them to enroll.
• If someone's already enrolled, the badge act as some motivation to keep contributing ("hey, I have a duty to fulfill").
• Finally, it can lend weight to these people's opinions on Lenire - after all, we've committed serious money and time to try it.

That's a great idea Hans. I'll leave it up to Markku to respond though!

 

[Heinrich_S7]

@kelpiemsp When you got the real treatment with the Minnesota device, how many sessions was it until you saw improvement?

It seems like Lenire is nowhere near as strong as the other two devices. As more reports from other users are coming in, even over a month of treatment has shown minimal reduction.

I'm beginning to waver a bit on this. Perhaps it is the real deal, but it's the weakest variant of it. The Michigan and Minnesota devices seem much more effective than Lenire so far.

 

[KotaDomowa]

@kelpiemsp When you got the real treatment with the Minnesota device, how many sessions was it until you saw improvement?

It seems like Lenire is nowhere near as strong as the other two devices. As more reports from other users are coming in, even over a month of treatment has shown minimal reduction.

I'm beginning to waver a bit on this. Perhaps it is the real deal, but it's the weakest variant of it. The Michigan and Minnesota devices seem much more effective than Lenire so far.

It is possible that Lenire works but just slower, and in the end it gives the same effect as the other two devices.

In my opinion, it's worth it to use Lenire. We don't really know when Michigan and Minnesota devices will come out. 2020? 2021?