Lenire — Bimodal Stimulation Treatment by Neuromod

Update: the latest podcast actually touches on this at 1:19:00-ish. My feed just froze though. It does seem as though purchase necessitates the travel and setup in Ireland, which is favorable in my case. Not sure how other users will feel though.

 

How do you read/interpret the attached graphic? Auditory before tongue or vice versa?

 

I'm far from an expert, but it looks like it's timing specifics. First the tongue stimulus happens for 20 milliseconds, then the audiotory stimulation follows shortly after, and this cycle repeats 80 milliseconds later.

 

That's a valid concern, that is basically their primary qualifier: what level one's hearing is. The CEO has said in both interviews that, naturally, being able to hear the sounds of the treatment is very important. The other most important qualifier is indeed MML, in so that the device isn't so loud as to cause more damage.

 

Sorry if I missed this in the thread or the podcast, but is it that simple to get this device? Just fly to Ireland and pick it up?

 

No. Mine can be very bad, but the biggest factor for me is the risk of getting worse. I want to see more user experiences before I try it.

 

Well, the treatment also consists of timing changes they will also do every 6 weeks. It's a total of 4 times one has to be at their office, with additional ones optional. They are working on getting the timing changes done online though.

 

Yes if you qualify, they have a screening based on hearing loss and a couple other issues which you can find on their web site. Of course I've been on the waiting list since July and still don't have an appointment date yet so there is that problematic middle step of waiting for an appointment.

 

I was desperate for an appointment, but now after hearing of the worsenings, I will not take one until I read about genuine improvements in the real world being reported.

I cannot afford the risk, I am not in the mild tinnitus/no hearing loss subset. I need to see further results that have not been released yet. I feel desperate to try the device but find myself unwilling as things are.

 

A quick question for anyone who's been to Ireland to pick up their device. Does it still cost (approximately) €2000 or did they up the price?

 

Interesting thread. Seems like most people aren’t getting benefit, but at least there is science behind it unlike The Shim Sham Scam.

 

How's your treatment going? Still improving/improved compared to pre-treatment times? No initial worsening, or anything different, or negative to mention? Hyperacusis... etc.

My fingers are fully crossed for ya! Greetings from your neighbor Slovakia... or Felvidék

 

No worsening at all. Maybe some improvement, but hard to tell. I'm on Day 5 though, not even a full week, so I wasn't expecting any miracle by this point

Funny tidbit: I work at a biotech startup so I talked quite openly about the device. Tinnitus statistics predict that 10-15% of the population has tinnitus and true enough, out of the total 50, 5-6 colleagues walked up to me and said that they too have the thing, too.

Thanks man and wishing you all the best, too!

 

Nah they didn't up it. If you pay upfront the total cost is 2150 euros (which includes the device and all 4 visits). If you pay in installments, 2500.

 

How does your hearing look like by the way - If you want to keep it for yourself, then don't share it, but am just wondering if we might be part of a similar cohort.

Attaching my audiogram and to be honest the 15 dB drop at 8 kHz in my right ear made me anxious that something is going wrong with my hearing (last audiogram from June 2019 and April 2019 showed a 5 dB drop), and after a repeat test I reached 10 dB loss . Nevertheless she said even with this one I have actually very good hearing and it might be caused by flying and is typical that our hearing threshold may vary day by day.

 

I wouldn't get your hopes up on that score - the hearing test I had at Neuromod was pretty basic. Done and dusted in about a minute.

If I've understood what they told me correctly, they don't use MML as any sort of eligibility criteria. They keep track of this as a precaution to track whether using the device is making your tinnitus get worse.

 

That’s surprisingly cheap for what it does.

 

Especially if you consider the 4 appointments included.

Your tinnitus is still gone, is it? How long did it take?

 

Surprisingly quick. It began to really vanish within the span of a month.

 

Whoa, how come you’ve not then posted in the Lenire User Experiences thread?

 

So I take it you finally got your bed made.

 

Huh. How come you're still here? Most people would just move on if something like that happened to them.

 

I didn’t use Lenire.

 

Was that from when your first began to use a mouth guard?

 

I think it´s convenient for him. Staying active here will prevent him from doing something "dumb" for his ears.

 

So you only had tinnitus for a month or did I misunderstand?

 

And it only took me three years.

Because I still really care about tinnitus research. Just because it doesn’t apply to me anymore does not mean that 15% of people worldwide are no longer suffering. There needs to be a cure regardless of whether or not I have it.

 

I'm sure they might. But you'd need to conduct a further poll to ask those that would purchase Lenire whether or not they have "severe suicidal tinnitus" (please don't conduct this additional poll by the way!)

I'll tell you why I would currently not purchase Lenire. Since coming to this forum and learning about Neuromod and bi-modal stimulation (really the only promising hope of treatment in the 30 years tinnitus has been a part of my life) I, like many sufferers, have had to take in a huge amount of cross-disciplinary information just to try and begin to understand where the science is at today regarding this malady. This has been a struggle for me, and that is always a big red flag.

I've said this before but I need to say it again - there's one thing above all else that continues to bother me and that's the subjective nature of THI that companies like Neuromod are having to use in order to measure and publish their results upon which patients make a commercial choice. I believe that the subjective nature of THI is a deep and anachronistic flaw in the current science. Let's face it, without perceived volume there'd be no tinnitus. And yet THI prompts debate on this thread that it's not about the volume! Moreover, we have a device that is trying to reduce perceived volume but doesn't seem to have an empirically reliable way of measuring that reduction and therefore relies on THI and a form of anecdotal evidence to measure the treatment outcome. These contradictions leave me feeling exasperated.

Since @Ruse made some good comments regarding residual inhibition during the process of testing MML I understand that side of it a bit better. And I do understand that Neuromod consider MML. Nevertheless, as a "meat and potatoes" kind of person I want to purchase a device that can make an empirical dialing down of the volume in my ears in the same way that, say a thermostat, can measurably reduce the temperature of a room from 20 degrees to 15 degrees.

If I were to use the temperature analogy, it seems to me that currently at least Lenire is a thermostatic device operating in a room where temperature can't be properly measured and yet it attempts to reduce the heat a little and then unfortunately relies on asking the subject whether or not they feel cooler. This presents a very serious conundrum because 15 degrees "feels" different to many people. On that basis we could have a scenario where the device promises a reduction to 15 degrees, is unable to get below 17 degrees, and yet people still hail it as a success simply because they feel cooler. The manufacturers get off quite lightly in this instance. Personally, I don't want this for tinnitus. I want a device that reduces volume by a set amount in decibels. I know I'm asking for a lot. But I believe this is what science needs to aim for.

I think the theory and science of bi-modal stimulation is brilliant. And contrary to how it may seem I do believe Neuromod et al is a reputable company that really does want to cure tinnitus. Having said that though, until I can resolve in my own mind the issue I have regarding objective loudness reduction measurements vs subjective THI reporting I won't be buying Lenire. Of course I want those here at Tinnitus Talk who have invested in the device to achieve positive outcomes, however. In that respect, we're all in this whistling boat together!

 

They do make note of average tinnitus reduction in dB. IIRC It's 7.5dB in the first trial after a period of weeks. That's about 33% volume reduction. But I agree using THI for something that works for dB is ridiculous.