Lenire — User Experiences and Reviews

What Is Lenire?

Lenire is a newly launched treatment for tinnitus, which is claimed to reduce ringing in the ears. Lenire was brought to market by Irish medical device company Neuromod, after having conducted several clinical trials to assess its safety and efficacy.

Post Your Experiences!

Lenire users are invited to post here about their experiences during and after completing the treatment programme. We do encourage users to share their experiences so that others may learn from it! You may report on for instance: the device itself; how easy or difficult it is to use; whether you experienced any immediate or long-term effects from it; and your experience as a Neuromod customer.

We’ve had a number of threads about Neuromod and Lenire on Tinnitus Talk, but we started this one for the sole purpose of collecting user experiences, making it easier for anyone out there to find this information conveniently bundled together.

IMPORTANT: This thread is intended solely for posting by users of the Lenire device. To keep this thread easy to read and follow, anyone who is not currently a Lenire user is kindly asked to refrain from posting here (or moderators will remove your post). We may ask anyone posting here to provide us with evidence that they are indeed Lenire users. In doing so, your identity will not be publicly revealed.

Reliability of Information

Please note that the experiences reported here are entirely personal and anecdotal. We are publishing this for informational purposes only, not as any kind of structured treatment review. Beware that one or two user experiences are not necessarily representative of the average user experience. We would advise anyone using this information to decide whether to opt for Lenire treatment to wait until a larger sample of user experiences is available and/or until Neuromod has published all its clinical trial results.

Other Useful Links

Learn more about the device through the video Q&A we conducted with them in December 2018:

Q&A: Tinnitus Hub Meets Neuromod (Lenire)

Any questions or responses to Lenire users, as well as general discussions about Lenire or Neuromod, are to be held in this thread:

Lenire — Bimodal Stimulation Treatment by Neuromod

Gathering More Structured User Experiences

Lenire users, or future users, are also kindly requested (if you have not already done so) to sign up for our Lenire User Experience Group. This entails periodically filling in a simple survey, allowing us to collect some more structured information on your experience. Your anonymity will be protected.

Sign Up to Lenire User Experience Group

 

Redknight/Andrew - Blog #1 (Assessment)

16/07/2019 - Neuromod Medical, Old Lucan Road, Dublin.

This will be my first blog post, I plan to do so something similar at each notable stage of the journey. All my comments are mine alone, I have no affiliation with Neuromod; some are facts, some are speculation (I'll denote any speculation for clarity).

Some quick context; I've had very mild fleeting tinnitus as long as I can remember, but it would always go away after a few hours. In February and March 2019 I developed a feeling of pressure in my sinuses and headaches that lasted a few weeks. When the symptoms went away (10th March 2019) I had more permanent tinnitus that is still there today. I also experienced a loud screech whilst on the London underground on the 5th March, this is notable because I remember my ears hurt afterward, probably not a good sign.

I will try and go through my experience at Neuromod, but not go over things that have already been discussed at length in the Tinnitus Talk Q&A and in this forum thread, unless relevant.

I will not mention Neuromod staff names or personal details, or details of other patients that I met at any of my appointments unless they want to share their details themselves. No one asked me to keep any of this private, I just don't feel it's appropriate or relevant.

------

I arrived at Neuromod around 15:00 for a 15:45 appointment and they saw me early I think. There's a window and a Nest Doorbell, with a sign that says to press here and someone will be with you soon. The person on the front desk gave me an iPad with a quick questionnaire to complete; pretty much the same as the one you complete when applying online, but with a digital signature field to sign.

I was then introduced to the clinical director/audiologist who would perform some tests and evaluate me for the device.

I was asked about my tinnitus and my hearing, how I cope with it and how I felt generally. I explained that my tinnitus varies wildly throughout the day, from a barely audible hiss (2 out of 10) to a louder 'eeeeeeeee', which sometimes developed a noise to it 'SSSHHHHEEEEEEE' (4 out of 10). I already know I have very mild loss around 4 kHz from a previous audiogram, which I was asked to bring with me to give a baseline for discussion. I was asked about whether I'd used hearing aids before, but given my very mild loss, there was no indication that they would benefit my tinnitus.

I was asked about my mood and whether I'd ever been diagnosed clinically with depression or any other psychiatric disorders. I have not been, so the questions ended there. SPECULATION - I believe I would have been probed much more in this area if I did suffer from proper depression or other psychiatric issues which may lead to not being recommended for the device.

The audiologist then looked inside my ears and confirmed that I had a tiny amount of wax in my right ear, nothing to be concerned about. SPECULATION - I believe if I had significant wax build-up (enough to cause hearing loss), I would have been told to get that sorted and come back another day. The audiologist was probably looking for eardrum issues, like the line of light they see, etc, but there was no comment made about mine.

I was then asked to sit in the soundproof booth and I did the normal 'push the button when you hear a sound' test. They made it clear that it was the quiet sounds that mattered the most and indeed, this was by far the quietest hearing test I've ever had, it was almost entirely made up of sounds I could barely hear (again, I have only very mild loss, almost not worth mentioning). It is worth noting though, that the audiologist had a copy of a very recent, professional audiogram done in Belfast. They may have assumed good hearing at louder levels and not needed to test those. I was not given a copy of this audiogram and did not ask for a copy. I did not do the 'can you hear these spoken words over other noises' test that I've done before.

I did, however, do a tinnitus masking test. This was really hard for me, my tinnitus tends to increase in volume as I introduce noise. As I sat there in a quiet booth, the tinnitus was barely a low hiss, but as the white noise was introduced my tinnitus ramped up, or at least my perception of it. I had a stab at telling where it was masked but wasn't 100% sure. I was asked to go again, with louder noise and again a third time, each with louder white noise. By the third, I was pretty sure it was masked (I'll talk a little about exclusion criteria later).

Once out of the booth the audiologist confirmed that I would be recommended for the device and we had a chat to talk more freely about Neuromod, Lenire and as many of the questions I've read on here that I could remember, without being rude (spoiler - I was tired and could only remember a few). I'll just list these as they come to me;

Q. What would exclude someone from Lenire and have you excluded many people?
A. Obviously, the contra indicators which are mentioned when you complete the online form are crucial, any of those could exclude you based on medical/safety grounds.

Non-acceptance of the realistic chances of benefitting from Lenire (we have all seen the results from the trials by now), if someone believes, and cannot be dissuaded from a notion that Lenire is going to cure or definitely reduce their tinnitus, then they would not be recommended the device. That's not to say that you would be refused if you just had the wrong idea about it. If someone walked in because their friend got silence and they had to have it explained to them, but they then accepted the realistic chances of that, they would still be eligible. Neuromod doesn't want unhappy customers, if you are essentially saying that you will not be happy with anything less than silence or x% reduction, you will be unhappy.

Obvious things that could reduce your tinnitus, that haven't been tried yet might mean coming back at a later date. Not to say you are refused, but rather, go away and try something and come back in x weeks. Examples of this were people with hearing loss that had never tried hearing aids or didn't wear them enough. Also, if you had a significant build-up of wax that would impair hearing, you would be asked to sort that first and come back. We didn't discuss any more examples, but if you present with something obvious to try first, they will ask you to do that. SPECULATION - there was no discussion of supplements during my visit, I don't believe supplements would be something they would consider 'an obvious thing to try', but if you had a medical need for medications, that might fall into this category.

Hearing loss. This is discussed more accurately elsewhere, but you need enough hearing to hear the sounds. If in doubt, send an audiogram to Neuromod before traveling.

Psychiatric issues. This was a big one an not easily answered. We did discuss this in-depth, and I know that some of you will be annoyed by this comment. I believe exclusion criteria are there for a reason and our conversation was had after my assessment and it would be unfair on everyone to outline what to say or not say to avoid exclusion. All I will say is to answer the questions honestly, for everyone involved's best interests.

Yes, many people have been excluded, no numbers were given though.

Q. What about the exclusion criteria in the clinical trials and some of the other things I've read on Tinnitus Talk? Here I was specifically querying whether age, tonality, length of time with tinnitus or cause of tinnitus was a factor.
A. Not in the selection/exclusion criteria. The clinical trial needed defined parameters and people of a similar cohort. The only exclusion criteria that we see in this area is that you have to have had tinnitus for more than 3 months. SPECULATION - To be categorised as having chronic tinnitus.

Tonality, cause of tinnitus, somatic or non-somatic, one ear or both don't matter.

Loudness does matter, as your tinnitus must be able to be masked at an acceptable volume of white noise. The acceptable level was not defined in dB, but the audiologist is looking to ensure you can listen to the sounds at an appropriate volume and that you don't need sound blaring in your ear for an hour to mask it.

All that said, there may be data in the future that suggests that specific forms of tinnitus may be better or worse affected by Lenire, they just don't know yet.

Q. What are your thoughts on people traveling from across the globe to get Lenire?
A. (Controversially) Whilst we can't legally stop people coming, they are doing so at their risk and take up an appointment slot for someone else. The thinking here is that, despite what many say, a large number of people just don't come back after their first appointments when they have traveled from far afield. MY THOUGHTS - being faced with an actual device, financial bill and the stark realities of how likely you are going to get silence or a significant reduction, many just decide to stop or wait a while before continuing. I had those feelings myself, I was convinced I was doing it until I got there, and I had a wobble when presented with the information in the clinic. It's nothing I don't already know, but don't assume you will be in the 80% who get a benefit, be prepared to be in the 20% and overjoyed if you're in the 80%.

Q. To the device fitter, not the audiologist, because I forgot earlier. Has anyone had Lenire permanently increase their tinnitus during the trials?
A. No, not permanently. Many people experience changes in their tinnitus during the treatment and for a time afterward. Of those that had an increase in their tinnitus, all resolved shortly afterward and returned to baseline or continued to reduce. Some chose to leave the trial as a result of changes, they were tracked and returned to baseline. Neuromod cannot 100% guarantee that you will not get an increase in your tinnitus because of or during treatment, even permanently. All they can do is tell you what they saw in the trial data. MY THOUGHTS - EEK! That sounds scary.

Q. Is the device effective beyond 12 weeks?
A. To be clear, the trial length was 12 weeks, simply because it had to have a start and an end. Some people starting seeing benefit a few weeks in, some months, some never. We don't know what would happen if you used it for three, six or 12 months and you should absolutely continue to use it until you see fit to stop. If you need follow up appointments, those can be arranged at a charge, but you are by no means left without assistance, should you need it.

In theory, a person could see results when using the device and need to use it every day to maintain those results permanently, we just don't know.

Q. Have you had many trial members return to buy the device?
A. Yes, many. Quite a few were seeing progressing results but returned to baseline after the trial ended and wished they could have continued using it. SPECULATION - I think if people who were mild responders in the trial could use it for six to twelve months they would see better results.

That's all I can think of at the moment, it was a bit of a blur, to be honest.

--------

I was then taken through to the device fitter.

The device was demonstrated to me, although as a demo model, it didn't light up or produce the electrical tongue stimulation. Other than the obvious buttons on it, there were a few notable things;

The device is set to a particular volume and tongue tip intensity, based on your assessment. They adjust this as necessary throughout each review appointment. Yes, they ask you the same questions and put you through the same tests to do this. Interestingly (to me anyway), you can adjust the volume up or down in case you are using the device in a quieter or louder than normal environment, there is no clinical benefit to this, other than you need to be able to hear the sounds and you don't want to cause discomfort to those with hyperacusis. You can adjust the tongue tip intensity depending on your preference, but again, this has no effect on clinical benefit, it's just for comfort (down to reduce the tingle or soreness, and up to know it's doing something).

The tongue tip has numerous metal connections on it. If they lose connection with your tongue for 30 seconds, the device will pause the sound and wait for you to reconnect.

You can pause the device for a maximum of 5 minutes, to take a call or something, but no longer or you will need to restart the treatment.

They suggest you do nothing during the treatment, just zone out. Some read whilst doing it, but you should refrain from watching TV (subtitles), posting online, playing games, etc. SPECULATION - They inferred that it might be beneficial to even not read during the treatment i.e the less you do the better. That said, sleeping is not allowed and you should sit straight up to reduce the chances of the tongue tip slipping out and you nodding off.

You should split the treatment into two, thirty-minute sessions per day. It doesn't matter when you do the treatment but aim to do them at the same time each day. I suggested once in the morning before going to work and once in the evening when the kids are in bed and she agreed. I believe you could do it for a single sixty-minute session, but that seemed to be less preferred than two, thirty-minute ones.

The device/treatment/contract has a 3-year life/warranty.

Only people from the Republic of Ireland can choose option 3 on the pricing sheet.

You cannot share the device. You cannot privately sell the device without written permission from Neuromod. You cannot resell the device. It's all in the attached terms and conditions.

You do keep the device after.

That's about all I remember, for now, I had a lovely coffee with a Tinnitus Talk member afterward and drove home after paying for my car-parking

My return dates are as follows;

02.08.19 - Device Fitting - 4 weeks is a guideline, purely based on timetable availability, there is no legal, financial or medical reason for the 4 weeks. I got a free spot in the diary.
20.09.19 - Review 1
01.11.19 - Review 2

 

I had intended to give details of my experience of my trip to Dublin (from England) and my initial assessment at Neuromod, but as @Redknight has provided such a fantastic overview of his experience, which was completely consistent with my experience on the day (apart from the fact that he asked lots of relevant and interesting questions, and I didn't!), I thought it might be a good idea just to give an overview of my 'Dublin and Neuromod' experience in case it is of any benefit to anyone who may be, or is thinking of, going.

I arrived the evening before my appointment, due to flight times not making it possible to have the appointment and return on the same day. Also, not knowing how to get everywhere meant by arriving the night before made it less of a potentially stressful experience! (Less stress = lower tinnitus in my case).

Everyone I met on my trip was incredibly helpful: on the shuttle bus from the airport, on the bus to the hospital and even at Dublin airport on my return when I'd arrived ridiculously early due to it pouring with rain and preferring to be in the airport than wandering around aimlessly with my suitcase! A lovely employee at Dublin airport made it possible for me to go through to departures several hours early... not usually my airport experience I have to say. People on the bus to Lucan where I was staying looked up my hotel to make sure I got off at the correct stop, it was all so funny really. They practically waved me off and made sure I knew where I was going. The next morning, on the bus to the hospital, the driver just told me to sit down and for some reason then wouldn't take any money from me for the fare... maybe I looked mad, or desperate - not sure! Anyway, travelling around on public transport seems to be no problem to put it mildly.

The hospital is lovely, very clean, organised, quite new, lovely grounds. But it is NOISY! If you arrive early maybe go down to the lower level where it is quiet and you can look out at the grounds and a big fountain. I went up to the Neuromod suite quite early to escape the noise. If you wear hearing aids might be a good idea to take them out prior to the audiology/hearing test. My tinnitus would have been hugely louder if I hadn't taken them out a couple of hours before due to the noise in the hospital. I think the audiologist was pleased I'd done that, so not sure if it's something everyone with hearing aids should do prior to hearing test. Just my experience.

The Neuromod staff were very helpful, understanding, and knowledgeable. It seems that they do share the suite of treatment rooms with another Consultant, as fitting appointments were only available for me on Tuesdays and Fridays.. maybe those are the only days they have the use of the rooms. Probably as availability of the device increases they may need to increase availability of appointment days and times.

I appreciate that those of us who are opting to try Lenire are very fortunate to have an appointment already. I am very happy to take the chance that it may do something to improve my situation. I have been following Neuromod for more than six years as when I first read about it (when it was 'Mutebutton'), I always felt instinctively that it might help. Just my view of course. I do also feel that as time goes on and more people are using the device, and giving feedback to Neuromod, that other refinements will be made and those of us who have purchased the device in the early stages won't be 'abandoned' if there are further tweaks or changes that can be made to the device which may prove to be more beneficial in the future.

I go back to collect the device on 27th August - a few weeks away but my choice due to other commitments.
I have booked my flight and this time will be going there and back the same day.
Lucan is a good place to stay for anyone who needs to stay overnight. Easy shuttle bus trip from the Airport and then lots of buses going past the hospital. Although, of course, other people may have to purchase a ticket!!

Kind regards.
Liz

 

***Adding this post here from the original Lenire thread***

A summary of use from start to finish.

So as per the instructions from Lenire, find a comfortable seated position - upright preferably. In their words, this reduces the risk of you falling asleep during the treatment and the tongue tip losing contact with your tongue.

Switch on the Lenire device by pressing and holding the power button, you'll get a green battery light (top light) which indicates the battery is well charged. This turns orange when the battery needs charging. If the tongue tip is already plugged into the device, the status light for the tongue tip will pulse green (Left hand light).



There is also a status light for the Bluetooth headset (right hand light) which pulses blue until the headset is switched on and pairs automatically. So before treatment can start, you have to make sure this is connected and the status light changes from pulsing blue to solid green.



Once everything is plugged in and paired (it's very easy) you will notice the white light that appears directly underneath the power button. This basically means the device is ready to go and treatment can begin.

Place the tongue tip over your bottom lip so your lip sits just behind the notch and rest the metal nodes onto your tongue. It takes a bit of fiddling at first to find a comfortable position so you're not forcing your lips closed or pressing your tongue up the entire time. As soon as your tongue makes contact with the nodes, the pulsing green light goes to a solid green light.

Pop the headphones over your ears, they're comfortable enough for the length of treatment. During the training they do emphasize the importance of making sure the correct speaker is over it's corresponding ear, R - Right and L - Left. This is due to the device being configured for your audio profile and hearing levels in each individual ear. They've made this pretty easy...



Now everything's switched on, in your mouth and over your ears you can press play. You'll notice the white LED will begin to rotate clockwise around the light bars.



The first thing you'll hear is white-noise, it sounds very similar to waves on a shoreline or wind rushing through tree's - very soothing. There's a mixture of raindrop noises alongside slow piano chords. This in my opinion, is just ambient sound to make the experience more soothing. The important sound comes in the form of a strange chirp (I don't know any other way to describe it) - @Redknight @Allan1967 you guys might be able to explain that sound better than I can.

This "chirp" is much faster in that it will play multiple chirps per piano chord but they're still in sync. The reason I say this is the important sound is because as soon as the chirp begins, your tongue tip will begin to give off synchronized tingles onto your tongue. It's not an uncomfortable sensation, but it is very foreign in that it's difficult to relate to other feelings. They're very isolated tingles / pops in the exact position of the metal nodes on the tongue tip.

FYI - According to the product specialist at Lenire, these "tingles", their frequency and the way they are sync'd with the sound depends on the treatment you've been given. The impression I got here is there is more than one pattern that Lenire can choose from to set on your device (My interpretation of what was said, not fact).

The music varies slightly throughout the treatment, sometimes the white-noise is more prominent, sometimes the piano chords and chirps are more prominent.

Around 20 minutes into my treatment the white-noise was much louder than any other sound coming through the headphones - almost borderline with what I'd consider as my comfortable max volume and this lasted for a few minutes, at which point it returned to its default level alongside the other sound effects.

Truthfully, after 20 - 25 minutes of sitting, doing nothing and listening to the "music" it does get a little boring and you find yourself struggling to not get distracted by other things.

As the treatment ends, the music begins to fade out gently - there is no abrupt stop in sound. It's a gentle gradient until the sound fades into nothing. This indicates the end of the treatment and the white light will return back to its position under the power button.

Overall - The treatment is by no means uncomfortable, distressing or overbearing. It's a very user friendly piece of equipment and the treatment seems to have been refined to match. Volumes can be adjusted, intensity of the tongue tip can be adjusted and all the equipment is charged via USB which is handy. They do provide a charger in the box!

That's about as much as I can explain having only used it for 30 minutes, if there's anything particular you want to know then you're welcome to ask.

 

Hi,

Just got my device.

I will post my experience...

Best of luck to all of you.

 

Week 1 Update

Similar to other members here, my tinnitus is noticeably louder since starting the treatment. It's certainly not a significant increase in volume but it's enough to make you aware of the change. This is most prominent immediately after a session with the Lenire device but can drop back off slightly throughout the day. It's certainly nerve-wracking and enough to make you question your commitment to the treatment so focusing back on the end goal here is important.

I've also noticed my hyperacusis is slightly more sensitive since starting the treatment. This is most likely down to me not wearing my WNGs nearly as much. I try juggling between the Lenire device and the WNGs but was advised by Lenire to give my ears a rest between the two, so something I will need to get more disciplined with.

I have also mentioned my visual snow being quite bad since starting the treatment. Unfortunately I can't be certain if this is related to the treatment, whether it's because it's been sunny recently or just tiredness. The latter two seem to have a real impact on my visual snow so will ride this out and see if anything changes.

As for the device and treatment sessions, there have been absolutely zero issues. It's comfortable to use, the batteries haven't needed charging since I started and in terms of functionality and Bluetooth connectivity, it's all been flawless. The Tongue-Tip or Spork as I now call it can be tricky to get into a comfortable position but that is subjective. I also increase the output of the Tongue-Tip some days as the default setting is very low and I struggle to notice if it's actually doing anything.

The only slight negative I have is the music / sounds can become very repetitive. In an ideal scenario and maybe something in future, they could introduce a couple of variations in audio that could be randomly selected per-session just to mix things up. BUT, this is a medical treatment and not an MP3 player so I would absolutely understand if this never happened.

I'll look at making another post at the 2 week mark.

Cheers,
Jack

 

Posting in here as I'm one of the lucky (or maybe unlucky, if this doesn't work) people using Lenire.

I'm US based so traveled to Ireland to get this rather than wait for Susan Shore's device to launch.

I've completed my third day so far. I just do two sessions one after the other first thing in the morning, after my morning breakfast to get my 60 minutes in and before my morning exercise. It's not too bad. I just have to get up a little earlier.

I have noticed an increase in volume in my tinnitus. I'm not an expert but I'd guess I'm around 16 dB... Reason I say I'm not an expert is because I've only ever really had two tests for tinnitus, and those were both at Neuromod. At the initial appointment it was pretty loud, and I was told I was at 16 dB, which is the same as I seem to be now today, 3 days in... And it's been unrelenting staying that high. Then my other tinnitus loudness test was during the 2nd Neuromod appointment (device fitting). My tinnitus was having a good day that day and though it was there, I wasn't noticing it. They said I was rated at 12 dB during that test. I was also asked how bothersome my tinnitus was on the 12 dB day. I said zero! 4 dB does seem to make a massive difference. So if I can get it down to that, I'll take it! It doesn't need to be completely gone, just not as intrusive as it is, on the louder days such as today.

During my device fitting appointment last week, I was told this increase in volume may happen. So again not too concerned. I will say I had a lot of good days prior to starting treatment (probably due to being on a two week vacation in England (perfect timing to get those appointments at Neuromod in!), so this recent spike is more noticeable now that I'm back to my normal routine and back in the USA.

I deal with tinnitus ok. Of course I'd like it gone... I wouldn't be spending all this money if it didn't bother me. However when I first got it, I was all doom and gloom. Peaking with feeling down around this time last year. Doctor prescribed me some antidepressants, though I tried taking them, they gave me a very bad stomach, so I stopped taking them after a couple of days and just dealt with my tinnitus. I'm glad I didn't take the antidepressants, because I bounced back, and would have otherwise attributed feeling better to the meds, when it was just a natural return to a non-depressed / down state. Anyway, just giving my own psychological profile here, as I know it plays a fairly big part with tinnitus.

Today I'm at a fairly decent comfortable stage in my life, kinda happy if anything a little anxious perhaps. I have enough hobbies that can keep myself busy enough to completely forget about tinnitus for maybe a day, but it always comes back and never really lets go. I may even get a couple of days in, when it's not bothersome at all. I really REALLY appreciate those days. But who can blame us for being upset on the bad days. Who wants that damn high pitched squeal going on!

So anyway, that's my profile. I'll keep my experience up to date here in this thread, in hopes that it helps others make a decent decision if Lenire might be for them.

I really hope that we read loads of 'yeah it's gone /downgraded from whatever to whatever' from many of us here in this community! Even if it's not me, I'll be happy for you. And if it doesn't work on me, I'm sure there will be a cure down the road and will just get along with my tinnitus in the meanwhile.

Good luck all!

 

Week 3 update:

My tinnitus is almost gone.

It flairs a little from high volume white noise, like road noise when driving fast, but it's very temporary now and it's extremely mild; hardly annoying at all.

I've had a week of almost silence now and every day is minutely quieter than the day before.

The sound that is still there is barely audible and I only ever hear it when I listen for it.

A good headache or noise exposure, I have no doubt would bring it back for a while, but I've had neither this week.

I did have a worsening of my tinnitus around week 1 or so but it went away for me after 2-3 days.

A