Lenire — Bimodal Stimulation Treatment by Neuromod

[Tybs]

Hi Tybs, would you be so kind as to share your neck exercises with us?

Thanks.

Sure, they're summarized in this topic. Read all the posts for explanation, as the videos are Dutch. Also, keep in mind that it should only have effect when the neck muscles are (part of) the problem: I don't expect any effect for sound induced tinnitus.

And don't expect any relief quick, it took me months to get where I am now. I can confirm that the gained relief is permanent though. I've had to halt the exercises for a few weeks now due to other reasons, and had no change in tinnitus (on average) during this time.

 

[threefirefour]

Really? Then why did you join the forum?

Because I used to have tinnitus. Started in 2016.

 

[Mathew Gould]

Donny this is simply not true. Their trial criteria states "Diagnosed with somatic tinnitus resulting from head or neck injury."

If they excluded people with somatic they would be excluding 70% percent or more of all tinnitus sufferers.

Trial Info

My tinnitus is from head/neck/jaw. Probably started with the neck... I can modulate my tinnitus only a little and only sometimes via my neck... I'm waiting on the Dr. Susan Shore device.

 

[Mentos]

Because I used to have tinnitus. Started in 2016.

Is your tinnitus really completely gone? I thought some mild form of it stayed with you.

 

[acute]

Because I used to have tinnitus. Started in 2016.

How long did you have tinnitus until it went away?

 

[threefirefour]

Is your tinnitus really completely gone? I thought some mild form of it stayed with you.

Yeah but I only hear it in a very quiet room with earplugs in.

How long did you have tinnitus until it went away?

About two years.

 

[ThomasC]

I can stop my tinnitus when clenching my jaw. I guess it is a good sign then.

I can also modulate it by touching my face, with neck movement and by opening my mouth.

 

[Lynny]

I was wondering; are there currently any credible reasons to believe the (mediocre) positive results as reported in the Lenire User Experiences thread are not a result of placebo?

 

[Sironketchup]

I was wondering; are there currently any credible reasons to believe the (mediocre) positive results as reported in the Lenire User Experiences thread are not a result of placebo?

Why so pessimistic?
@hans799 had tinnitus all his life and I'm sure he can judge it. BTW, how are you you doing?
@Redknight's tinnitus is almost gone. Placebo? I doubt it.

 

[AliceW]

Does anyone know about the side effects of using Lenire? Could you send me the list please?

 

[Nonomat]

Does anyone know about the side effects of using Lenire? Could you send me the list please?

I might be wrong but as long as we don't have access to the results of the clinical trials, this is something we don't really know.

When asked about it in the podcast, Ross mentions the fluctuations in loudness (not permanent) that everyone reports as well as headaches in some patients.

https://www.tinnitustalk.com/podcast/episode/neuromod-lenire-treating-tinnitus-the-bimodal-way/

So they track side effects but haven't reported anything too serious I guess...

(Also unrelated but I was wondering why everyone was pissed off we didn't have the data of the trials when you could see the reports on the Lenire website from TENT-A1 and TENT-A2. Well it's about the process of the study, not the results, if anyone is slow like me . At least now I know...)

 

[Agrajag364]

Yeah but I only hear it in a very quiet room with earplugs in.

About two years.

Was it a jaw splint that helped it go away?

 

[pinklights98]

Does anyone know about the side effects of using Lenire? Could you send me the list please?

I believe the only other side effect besides temporary increase of tinnitus might be headaches. 2% of trial participants reported experiencing headaches.

 

[Ruse]

Does anyone know about the side effects of using Lenire? Could you send me the list please?

Side effects from TENT-A1:

• Mild/moderate tinnitus pitch/loudness increase - 36 patients
• Otalgia - 3 patients
• Severe / sudden increase in tinnitus - 3 patients
• Headache - 2 patients
• Temporary sensation on tongue - 2 patients
• Ulcer on tongue - 2 patients
• Angular Cheilitis - 1 patient
• Jaw Pain - 1 patient
• Mucusal numbness - 1 patient
• Tinnitus location change - 1 patient
• Ulcer of mouth - 1 patient

 

[threefirefour]

Was it a jaw splint that helped it go away?

Yes.

 

[ChrisBoyMonkey]

I was wondering; are there currently any credible reasons to believe the (mediocre) positive results as reported in the Lenire User Experiences thread are not a result of placebo?

Have you read them all? Most users are seeing more benefits as they keep using the device. I also go through everything on this thread, there are quite a few 3rd party reports of success with it. This looks to be working pretty well, though not for everyone, which is perfectly in line with what they've been saying. It's the first thing that actually works!

 

[GlennS]

Why so pessimistic?

Will be looking forward to the initial formal number-crunch of user reports that will be soon (April?) but so far the breakdown of improvers/neutral/disimprovers is still nowhere close to the original hype. The biggest segment are those who can't really say with authority that things are better, hence in the neutral and/or placebo group, which is really no better than MuteButton, ACRN, etc...

I know me saying this will bring out the usual suspects who will swear up and down that the stats are more favorable than I'm claiming they are, but that's my assessment of what I'm reading and I'm sticking by it.

 

[alex1975]

Yes.

Hi, I'm just curious, did you also have any sort of hearing loss or was it just due to TMJ and that is why the jaw splint helped your tinnitus?

Happy New Year by the way!

 

[F-u-T]

Does anyone know about the side effects of using Lenire? Could you send me the list please?

I hope your treatment is going well.

 

[FrontRoomFanatic]

I have noise damage from headphones. I don't have somatic tinnitus... So the prevailing thought at the moment is that Neuromod's Lenire device is less likely to work for me? That's a shame.

 

[Lynny]

Why so pessimistic?
@hans799 had tinnitus all his life and I'm sure he can judge it. BTW, how are you you doing?
@Redknight's tinnitus is almost gone. Placebo? I doubt it.

I'm not trying to be pessimistic, I don't think all of them could be placebo but I'd like to have that thought confirmed, hence the question. Thanks for your reply!

 

[threefirefour]

Hi, I'm just curious, did you also have any sort of hearing loss or was it just due to TMJ and that is why the jaw splint helped your tinnitus?

Happy New Year by the way!

It was do to TMD. I do not have any significant hearing loss.

 

[Bartoli]

I was wondering; are there currently any credible reasons to believe the (mediocre) positive results as reported in the Lenire User Experiences thread are not a result of placebo?

I thought it was a good question. I looked it up in the Q&A with Dr. Ross O'Neill. The most important arguments are that the improvements they've seen in the trials go beyond the improvement seen in a typical placebo, and that the improvements lasted over at least 12 months, which also doesn't tend to happen in the placebo effect.

As to why they didn't include placebo in the trials (Ross said Neuromod got that question a lot, and it sounds like he's sick of it), apparently, it's hard to design a placebo arm for a medical device without unblinding the trial and have the patients notice that they're not getting any electrical stimulation for instance, voiding the whole double blinded placebo protocol.

It all seems very credible to me.

 

[Mathieulh]

My flight is booked, I won't have much time for tourism but I'll have plenty time to attend the assessment session.

 

[Lynny]

I thought it was a good question. I looked it up in the Q&A with Dr. Ross O'Neill. The most important arguments are that the improvements they've seen in the trials go beyond the improvement seen in a typical placebo, and that the improvements lasted over at least 12 months, which also doesn't tend to happen in the placebo effect.

As to why they didn't include placebo in the trials (Ross said Neuromod got that question a lot, and it sounds like he's sick of it), apparently, it's hard to design a placebo arm for a medical device without unblinding the trial and have the patients notice that they're not getting any electrical stimulation for instance, voiding the whole double blinded placebo protocol.

It all seems very credible to me.

That's very helpful, thank you for the information.

 

[uae96]

I have an appointment on 23 January.

When should I expect to start the treatment after the initial appointment?

 

[pinklights98]

I have an appointment on 23 January.

When should I expect to start the treatment after the initial appointment?

I'd say approx 2 weeks after, based on what people have been saying. Best of luck to you!

 

[Eric N]

I have an appointment on 23 January.

When should I expect to start the treatment after the initial appointment?

Based on an e-mail response I got from Neuromod today, it takes 2 to 6 weeks to get the device after the initial assessment.

 

[JayBowson]

I know me saying this will bring out the usual suspects who will swear up and down that the stats are more favorable than I'm claiming they are, but that's my assessment of what I'm reading and I'm sticking by it.

I'm sure you mean me but I wouldn't actually say this. So you can keep your famous strawmen to yourself.

What I would say is that you were expecting the stats to mean more (lifechanging events) than they actually do. And you've been caught saying as much not but a few posts ago.

 

[Meiro]

Happy New Year guys! May this year will be a year of silence (also a reduced tinnitus volume will be a bless ) !

I got my tinnitus almost five years ago in my left ear (infection), it's not reactive. Last time I checked my THI was around 30.

I have my first appointment with Neuromod in March and I started thinking if it's worth the flights, hotels and other expenses .

I was wondering if anyone from the Lenire users that got tinnitus from ear infection can share some insights about the treatment?

P.S.
The only one that I know of are Allan1967 who I pray recovers and the Italian dude (luca?) who is not posting that much .

I promise to share my insights when the time arrives.