Lenire — Bimodal Stimulation Treatment by Neuromod

Congratulations... great news.

Out of curiosity, how much hearing loss do you suffer from... i.e. on an audiogram, is it mild or severe?

Thanks.

 

Mine is different. I noticed that on some days where my hyperacusis is spiking my tinnitus is a bit lower and vice versa. Really have no clue why.

 

@Josdela Do you have a time stamp on that comment?

 

For those of you who have brought the Lenire device back to the United States, is there any issue with charging the device in our typical 120V outlet? Do you just buy the typical converter plug? Thanks for your help.

 

From BRAI3N's Facebook page:

New publication from Prof. Vanneste, Prof. Langguth, Prof. Lim and Prof. Hall in collaboration with Neuromod.

https://www.researchprotocols.org/2019/9/e13176/

 

I feel like I saw that too, but it was timestamped from like 2018 or so. What's the timestamp?

 

On my part, I found some rare footage of someone actually getting accepted for Susan Shore's 18+ month trial. Many Bothans died to bring us this clip.

 

@AfroSnowman @ChrisBoyMonkey

It was from a conversation yesterday. From what I understood they were in the clinical trial this year 2019. She no longer responded. I guess she received the placebo or fake device, but surely others are testing the true device.

I also have doubts whether this works for other patients who do not have somatic tinnitus.

 

@BigNick

How are your ear spasms now? Still better since using Lenire than before?

 

Well, my saga in all this has ended (for now) as I just canceled my appointment.

Based on the feedback I've seen from early adopters, I might be willing to gamble with Lenire if it were available in the US but not when you factor in the money and logistics of flying from Boston to Dublin 4 times. The feedback really needed to be better than what we've seen and the 'disimprovers' are cause for concern. Hopefully between now and it arriving in the US we'll get a more definitive picture of its efficacy. I can hang on for a while but if this is a bust I may finally have to get myself on anti-depressants which I've managed to avoid all these years.

 

Sorry to hear that, but I also understand. Four transatlantic return tickets would probably have dwarfed the cost of the device itself. At this point it seems that Lenire delivers moderate improvement but is not a miracle cure so I can see why you didn't want to shell out that kind of money.

Do hang around the thread, let's see how things develop!

 

Sorry to hear. It takes bravery and rational thinking to do that.

If the thought of having an appointment for a possible cure made you pull through all this time, you may not need antidepressants. In saying that you coped just because of Lenire you sort of admit to yourself that your mind is a powerful tool in coping. Just an observation I'm making. If you choose to go the AD route, more power to you.

 

Don't give up! I’m getting on the Michigan boat. It’s just a matter of getting them to release it.

I’m thinking Lenire is legit but the company that created it pushed out an “early early” device for bimodal stimulation. It doesn’t seem nearly as good as the other two versions.

In the end, I feel @RCP1 was right about Neuromod and Lenire in general. I think Dr. Shore will give us the real deal.

 

Funny how quickly you are ready to turn your back on Lenire, and start supporting these other two ventures neither of which has strong clinical trials backing their efficacy.

Dr. Shore's trial had, what, 20 people? What a jaw-dropping sample.

Rest assured my friend, you will be disappointed with the Dr. Shore's device as well... tinnitus is a tough nut to crack.

 

Not sure where you’re going with me turning my back on Neuromod quickly. I’ve been on the fence since March bud. And I still think their device is legit, I believe it was just slapped together quickly. These devices won’t work for everyone, but out of three of them they’re bound to work for the majority.

The testimonials we got from Michigan and Minnesota though were very profound and they were from people ON this board. People had a significant lowering or outright silence.

Lenire’s top video testimonials were basically “like yeah I can deal with it better I find” or “it’s not lower in volume, but intensity in my life!”. And we’re basically seeing placebo level improvement testimonials from the users experience on the forum too.

We aren’t seeing that from the other two devices. And while yes, Susan Shore’s sample size is rather small, at least it’s verified by a trustworthy institution. Neuromod is a private company trying to sell a device, not a University or College, so their 500 patient trial means nothing until it’s been peer reviewed. Of course Neuromod is going to say their device works. You won’t make sales if you say it doesn’t.

Perhaps that’s why they’re withholding the peer review from public eyes. It’s pretty suss if you ask me.

 

I rate this as a non-crazy decision, based on the information available to you and current logistics. Hang in there.

It's also possible and I'd say likely that Lenire will improve outcomes based on what they're learning. Either way I really think our options are improving if at a snail's pace.

 

Experts have met each other in Barcelona to talk about new brain neuromodulation techniques for tinnitus.
You might have seen the post on Brai3n's Facebook page.

I am curious what they think about Neuromod.

To me they told: Trial and Error.

 

Sorry going to have to agree with @ajc on this one.

I have no idea how you can be so quick to dismiss clinical trials with over 500 people on the basis that they are not peer reviewed YET decide from one / two anecdotes that the other devices are already better.

It’s a completely nonsensical argument.

 

Because it’s from the seller. Remember when Microsoft tried selling the original Kinect and the Kinect 2? They said both worked flawlessly with body movements, when in reality the tracking was god awful. When the second iteration came out, basically it was “hey guys, we know the original Kinect was garbage, but this one works!”. And yet again, 80% of the time the damn thing could read your most BASIC movements.

Data from corporations is the last thing I’d believe, the only way I’m gonna buy Neuromod’s data is if a legit scientific institution reviews it. When that happens Ruse, I’ll accept their data.

They don’t seem to be intended on sharing it with the public though

 

To Ruse:

I recently carefully listened again to Lenire's testimonials posted on YouTube.

If they had such success with the full majority of 500 tested applicants, then why did they choose to release those postings that were only indicative of typical placeboized, barely perceptible improvements?

Admittedly, that one lady said that hers went away, but that was just one.

 

I've been saying that for months and have been subjected to repeated reprisals for pointing it out.

 

Here's how the hype-cycle went based on me camping out here for months.

When I entered into this thread it was after Mutebutton and there was almost universal suspicion towards Neuromod. Attitudes didn't begin to shift until after Dr. Ross' video interview--not that everyone shifted to team Neuromod, but it at least broke off into an almost 50/50 split of optimists and pessimists.

The debate at that point focused on when (or if) Lenire would be released and if so, what it would cost. Whether it would be effective wasn't argued as much because it would be irrelevant until after it's released.

Once they announced that it was coming out it seemed to begin to quiet the pessimists. It was around this time that we had Lim's PowerPoint presentation which seemed to reinforce that Neuromod knew their stuff. Lim really boosted their credibility.

That was the peak of optimism right when the appointments started being booked.

The most important thing should be aggregate user reports. Sure, peer-review and all that, but when I buy something on Amazon or Newegg, I read the reviews. Sockpuppets not withstanding, I trust crowdsourced reviews, especially if some of these are coming from long-time posters who seem like actual real people.

Since the first interview was instrumental in lending Neuromod credibility, the followup interview is really important to address the discrepancies between user reports and Neuromod's aggregate data. Unfortunately it couldn't happen soon enough to make a difference in my immediate plans.

 

I don’t think we’re seeing the results from their 500 person trial in the real world either.

 

Haven't heard from @kelpiemsp lately but he was the most profound testimonial and he was Minnesota, right?

So I am more interested in Minnesota than Michigan, but neither look like they're going to be available anytime soon.

 

I don’t think anyone is suggesting Lenire is going to make everyone’s tinnitus go away just to be clear.

However to say that not one mentioned an improvement beyond “being able to deal with it better” as @Heinrich_S7 has suggested is total nonsense.

A few examples (I’m not going to go through every one):

Ken Tobin was contacted over Facebook by someone on this forum and he confirmed that his tinnitus reduced by 30% and the reactive element of his tinnitus was gone.

Niall Quinn mentions in his testimonial that his tinnitus went from being “way past 10” to around a 3.

Eugene Molumby states in his testimonial his tinnitus was “much improved”.

I’m not sure how these can be chalked down to a placebo effect?

Yes there are a couple of testimonials in which they do mention that it’s easier to “deal with” but we also cannot assume that they have had zero reduction just because they haven’t given a percentage figure...

 

@linearb Seemed to have a pretty significant reduction too with the Michigan device.

Unfortunately though we aren't seeing nearly as good improvements in the field from the responders. I still get that we need to give the first people a little more time, but we're past 10 weeks, the effects should be apparent by now or at the very least begin to manifest to some extent.

A 30-40% reduction like Ken had would be what I'd want from the responders group (as you said, it's not an outright cure). We aren't seeing that though, maybe it just needs more time, but maybe their data is marketing, it's always a possibility.

 

If they had picked their best results only for the testimonials they would be slammed for mis-representing the product.

If they pick a set of testimonials that is actually fairly representative they are slammed that some of the results don’t look too promising.

Unfortunately against those stuck in a negative loop of thinking they cannot possibly win this one.

 

As long as the trials are done and controlled by the company, we must be cautious with the results.

The best would be if an independent institution repeated or confirmed the results.

I am just wondering how Ross O‘Neill could get professors like Berthold Langguth, Sven Vanneste and Hubert Lim to support Neuromod.

Do you really think they just stepped in because of financial reasons? That would be very disappointing...

 

No one can seriously believe that a company would overlook more positive results simply because they didn't want to overhype their product. I would expect them to present their most favorable responses and certainly wouldn't hold that against them.

 

An esteemed professor (Deborah Hall) supported ACRN (Desyncra). It was a bust.

Most professors are not getting very well paid by their universities so accepting financial compensation can be lucrative for them. And afterwards, if the treatment fails, they can simply say they had high expectations but tinnitus is a complex issue, better luck next time.

This is the truth. Having all these professors on board is mostly for the publicity.

Neuromod is not to be singled out here, all for-profit companies would do the same thing...