Lenire — Bimodal Stimulation Treatment by Neuromod

@TinMan2019

I see you have a positive post in the user experience thread. Glad to hear it. How long have you had tinnitus?

 

@Allan1967 @valeri

I could imagine that Neuromod can modulate the sounds to something your tinnitus does not react on.

My tinnitus was also highly reactive first months after tinnitus onset. Luckily this settled down and white noise or ACRN beep sounds mask my tinnitus, but not increase it. Other high pitch sounds increase my tinnitus temporarily (for some seconds), it really hurts in my ears.

Allan, I hope it settles down for you. Be patient, of course I know it is hard. I also have a concert of high-pitch sounds in my ears. If meds can help you for some time, please take them. Remeron is excellent for sleeping. Lexapro against anxiety. I know this is all big sh... to suffer with tinnitus, but we are here for each other.

Take care.

 

I got a response back from Neuromod this morning. It came back from an Audiogram Review email address. There was not much information in the email other than saying we look forward to seeing you at your appointment in November.

 

That's pretty vague. If I were you I would get them to state that they see nothing in the audiogram that would reject you (which isn't necessarily an auto-approval, just NOT an auto-reject).

 

How’s everybody feeling with the new Lenire, and the information so far provided? Myself, I am not feeling at all confident but I suppose it’s early days.

I saw a comment on Facebook. Somebody has been using Lenire for 2 months and reports zero effect :-(

 

I'm a little hopeless but I think we should wait longer.

 

Easy with the doom and gloom guys. We have an overwhelming majority reporting positive changes.

@Clare B didn’t have any changes until after treatment.

 

I still think the majority of people will get some kind of reduction from this.

Let’s have some faith that the clinical trials weren’t a sham!

 

She actually is saying hers has been worse but she mentioned that they told her that would probably happen in the beginning. She also mentioned that they said it won't work for everybody, unfortunately she might fall in that small percentage that doesn't get any or much help.

Before further negative speculation, she still has time to finish her treatment. The reporting of worsenings, even if temporary, are still very scary though..

 

Do you know what was the cause of their tinnitus?

 

I'm cautiously optimistic. Most people reported progress and we're just past 6 weeks even for the earliest adopters.

 

Worsening sounds scary... Lenire is like Russian roulette. Try or Die.

Puuh I don't know what I should think about it. Until now, the response is not too positive to be honest.

For sure, we can wait another 6-12 weeks to learn more.

 

I emailed Neuromod to ask about the status of the publication of their trials, specifically TENT-A1. They kindly replied and said:

“The TENT-A1 trial paper is being finalised and will be submitted for peer-review very soon”

So I would assume it will be a good 2-3 months minimum before the publication of the trial data.

I look forward to that and will be more likely to go ahead with trying Lenire after. I was hoping they might be further along in the process as they did say on Twitter late last year they were about to submit for peer review. But they may well have had to do some further analysis of the data etc.

 

Markku, how was the conference/expo?

Anything interesting to come from Neuromod?

 

This technology might not work for some of us, but it could be updated/improved in the future, target other areas in the brain etc...

 

I'm with you on that sister. My comfort level of spending what will be a lot of money on travel (I live just to the left of the ends of the earth) will be much assuaged by seeing a little data. Certainly the write up given in Tinnitus Talk makes it sound like the study structure itself is pretty solid, so if the results are anything like what has been suggested I am going to open up my wallet and hope for some relief.

Is there any suggestion that their Stage A2 data will ever be released?

 

I had my six week review and device update. The treatment is going to last 18 weeks, so there'll be another update to the parameters end of October.

 

I didn’t ask them about the A2 trial I’m afraid.

 

18 weeks, not 12 weeks? A surprise for me.

 

They defined an 18-week period?

They told me you are advised to use it indefinitely, until you are satisfied with the results and feel it's sustainable.

 

@BigNick

Did they say why the treatment will last 18 weeks? Is it the same for all patients?

Did they have new information about the efficacy of the treatment on other patients?

 

She said it's likely to be more effective and they are learning all the time. I didn't enquire beyond that.

 

My interpretation is that they on an ad-hoc basis have asked some people who didn't get a significant benefit to continue using the device. But we cannot know if those people ultimately benefited or not.

Anyways, I think all of us who bought the device should try it for 6 months. No point in not trying for a long time as long as it's not worsening the tinnitus.

 

Does anyone know what will happen if one wishes to undergo the treatment again in the future, e.g. in the instance of a further acoustic trauma?

I'm guessing there is not a way to cycle through the previous timings?

Will there be another fee to have this all set up again?

 

Do they change the timings @BigNick? Mine's on Friday.

 

How is your tinnitus lately at the 6 week checkpoint? Is your tinnitus now better than it was before starting the treatment?

 

That's awesome news. Maybe it'll be of help to do it a fourth time, or maybe even indefinitely until the tinnitus is basically gone? That would be amazing.

 

I believe the Michigan team concluded that longer use induced greater results in the long term?

Lenire is using the same methodology so a greater improvement should happen with longer use.

 

Yes, definitely better, still sucks tho!