Lenire — User Experiences and Reviews

6 Week Update

Okay, so I've now completed 6 weeks of using Lenire with 100% compliance to the treatment regime, which has not been easy at times. I did 2 treatments on the train yesterday just to keep it going. I've kept a little diary/spreadsheet detailing when I've completed treatments and also general comments. Looking back, I'd say that for me weeks 3 and 4 were the most difficult with my tinnitus being somewhat elevated and also going through a period of headaches. Obviously, no way of knowing if these were related to the treatment but at the time it was another thing that made maintaining the regime more challenging. For anyone going through this then hang in there. I expected and was warned about this possibility so I wasn't too concerned, though it does make it harder to continue.

Since then I seem to have become more accustomed to the treatment. I get a bit of a spike after treatments, but this has settled somewhat. I've had a few other positive indicators as well. I seem to be sleeping better than before which is good. I've also had couple of nights out drinking in relatively noisy environments and in the past I may well have avoided this as the noise would get too much and I'd suffer with increased tinnitus the day after drinking. Was quite surprising not to actually feel too bad the day after. The most positive thing is the increased ability to mask tinnitus which I can only put down to a change in volume/pitch. I seem to get more situations in the day when I can only hear my tinnitus if I stop to listen for it. However and for balance, it's still noisy when I wake up and when I go to bed (although better). I've also had issues in the past whereby stress would increase the tinnitus to unbearable levels and having been through some stressful periods last week this still happens although I would say to a slightly lesser extent.

I think it's very difficult to give an objective opinion on something we experience so subjectively and it makes sense to me that some user reports can appear wishy washy or vague having got this far. There are times when you think hey this okay but other times when you think uh this is as bad as ever. Before the treatment I would go through good and bad periods and I suppose this has not changed. Yet, in trying to be balanced I think it's fair to say that overall, I can safely say there has been some marginal improvement. I'm due back in Dublin next week for the 6 week review (which will actually be 7 weeks). I'm really hoping to be a text book case whereby the change to the treatment protocol drives further improvement. If the treatment can deliver another level of improvement then I think this would be significant on top of the experience so far. Take care all...

 

6 week update

Today I finished my sixth week using Lenire. I have had 100% compliance with using the device twice a day and tried to make it around the same time. I am sad to report no changes for me. I would say I maybe had two days over those weeks that I felt I was better. That is probably placebo at best.

As others have said the treatment does spike my tinnitus. Sometimes the spike will last 20 minutes after treatment others it will last the rest of the day, but will be gone when I wake up in the morning.

I don't go back for another four weeks for an adjustment since they suggested I use their new schedule of every 10 weeks instead of six.

Right now I would say I am a bit frustrated, but there is still a chance so I will keep moving forward. I knew this may not work going into it, but I had to give it a chance in case I was one of the lucky ones to get relief.

 

Reply to a Lenire user requesting a brief update from me...

Well, I'm still using Lenire as I find it weirdly restful listening to something different from my ever-present drill. Sometimes I think it's doing something, not enough to categorically claim an improvement but somehow feel a bit better, maybe it just changes my emotional response? Who knows? Anyway, just carrying on with a positive mindset. I don't think it's a quick fix - the twelve week thing was just for the trials. I hope you get a real benefit from it going forward. I'm not sorry I decided to try it.

Take care,
Liz

 

15-week update

• My first 6 weeks on Lenire have been unequivocally positive, leading to lowered subjective tinnitus perception, an objective decrease of MML to 10 from 6, and a significant reduction in tinnitus reactivity to external noise.
• My second 6 weeks (on another stimulus) haven't been great. My tinnitus has an old component which is 31 years old (like the rest of me) and a new component which is 3 years old (probably due to headphone use at that time). The second 6 weeks have spiked the new component and caused sleep difficulties.
• For the last 3 weeks I've been back on my original program. The results are... weird. The volume of the old component of my tinnitus is again decreasing in volume, and its reactivity is again decreasing. However, the new component is still being sensitive, with frequent spikes.

Obviously, I'm very glad that the old tinnitus is reacting well to the first Lenire stimulus.

As for the new tinnitus, I think the second 6 weeks of treatment screwed something up with it which hasn't returned to baseline yet, but since Lenire's method of action is training the brain, its effects should always be temporary, so whatever happened to the new tinnitus will, over time, revert.

So I'm continuing with the treatment, really hoping that the new tinnitus will get in line sooner than later, because the old tinnitus being quieter again is just awesome.

 

Week 12 update.

In my previous post (week 3) I mentioned that I was experiencing improvements and this trend carried on till week 6 when Neuromod changed the settings of my device.

The following weeks were not so glorious and unfortunately I did not see any further improvements and I even thought I was experiencing dis-improvements.

On week 10 I had a dilemma, I was about to go on holidays to Egypt for 10 days and I did not know whether to take my Lenire with me or not as things were not going so well. To start with I did not want to lose it and I thought that it might just be a waste of time as I was not experiencing any improvements. In the end I decided to take it with me but I would only use it once a day instead of twice a day like I did at the start of the treatment.

After a couple of days in Egypt, I noticed that I was slowly going back to the state I was in during the first 6 weeks. Was it because I was in a relaxing environment on a cruise ship on the Nile? Or because I switched to one session a day? Who knows? But what is sure is that I was feeling better.

However the last couple of days of my trip were terrible for my ears, with noisy restaurants in Alexandria, hours on the motorway and two very long flights. I came home with pretty horrible ringing and a new weird sound in my right ear. It felt like all the gains from the previous days went down the drain.

On Monday I decided to stick to one daily session and slowly but surely I saw improvements again.

My awful ringing was slowly disappearing and the new noise started to fade away.

Today was incredibly quiet, I stayed at home and barely heard my tinnitus (unless I was in a quiet room).

As I am writing this in my living-room, the tv is on and normally I would definitely hear my tinnitus over it. Well, this time the tv is winning, the tinnitus is still here but at a much lower level than two weeks ago.

In my opinion this can only be the effect of Lenire.

Two weeks ago I would have told you that my treatment was going backwards but the last couple of days make me hopeful that I am now making serious progress.

I am looking forward to my next appointment with Neuromod on Tuesday!

 

12 week update

In the first six weeks I wasn't sure if I felt better thanks to Lenire. I didn't trust myself enough so I suspected that I was lying to myself / I just accepted the life sentence.

After 6 weeks, however, I felt so good that I thought "Why fly there? Maybe the current settings will lead me to silence?". Of course, I went for a visit - full silence is still my big, big dream and I had some hope that the new settings will do it for me.

When the new settings led me to a much worse condition (to the state before Lenire?), at least I finally believed in my own opinions. I don't react paradoxically. I do not lie to myself and when it is loud I am very unhappy. If I'm calm and cheerful / focused on other areas of life, however, it means it's better. So the first settings REALLY helped me! I began to assume that I am rational and I can trust my own opinion.

A week before the visit, I stopped using setting two. Tinnitus returned to the state of the sixth week.

I am currently continuing to use Lenire on setting number one. I even bought a spare tongue tip. You know how bad days with tinnitus are horrible, so (since I don't experience full silence) I am afraid that it will get worse BUT I really work much better. I still have hope that Lenire will give me silence (Neuromod claims that my MML went from 8 dB to 3 dB, but such a big change feels strange to me.)

I don't look at life as in "In the end" Linkin Park - "... but in the end it doesn't even matter", and that's how I looked at it before Lenire. I am looking for a new job and I can devote myself to it. I am still studying law - even if not with the ambition as beforetTinnitus, I attach much more importance to my studies than, for example, a year ago. It even bothers me that I weigh 152 pounds but... I don't feel ready for the diet - yes, paying attention to appearance is proof of health.

I am not one who can simply divert their attention away from tinnitus (I have a great tendency to OCD), just convince myself that there are worse diseases in life, just accept the fate with the passage of time. I am a man who got panic attacks and cried at the thought that Lenire might not help him / he was so scared by such a possibility that he was unable to work.

And this means one thing - if someone like me gets the improvement that I describe in the above paragraph, it means that - I have to admit, despite the fear mentioned above - Lenire really works for me

 

Seven Week Update:

My tinnitus has not improved at all whatsoever. I had one really good day two weeks ago and that was it. And I had a migraine that day, so I think it was related to that as migraines tend to decrease my tinnitus.

My tinnitus fluctuates a lot, and its exhausting and annoying. One hour it will be somewhat bearable and then the next its unbearably piercing.

I don't even know if I should even go for my adjustment in about a week, but I'm doubtful that it will help at all. It seems that if people are going to respond, they will respond at least a little within the first six weeks on the first setting.

I really think it's pretty random on who this helps, because I thought I was a strong candidate for this device (hyperacusis, somatic elements, no hearing loss).

 

12 week update:

Just finished my final visit, MML 6 dB (was 8 dB at the first visit), THI 36 points (was 42 points at the first visit). I would say Lenire's impact on me is slight improvement but it's close to placebo.

I feel better than prior to the treatment but I was expecting more.

 

28 week update

I started with Lenire in July 2019, and after 8 weeks I did feel that I had some improvements however these few good days were short-lived. I stuck at it using the device twice a day morning and evening for 6 months. Then I dropped to only using the device in the evening as my tinnitus became worse after using the device.

At the moment I have decided to take a break from treatment for a few days. My tinnitus is still there all the time and is still very intrusive.

After the first 8 weeks, my MML did drop from 38 dB to 28 dB and has remained at that since.

I'm not giving up yet as I have nothing to lose by continuing but I don't feel hopeful that It will do anything significant in my case.

 

6 month update

As I've said previously I experienced some improvement in the early stages.
Specifically my worst spikes stopped and haven't returned, not once.

However, there's been little change in my baseline tinnitus, which is still pretty horrible and I hear above TV, driving, busy places etc. I said earlier I though I'd had a 20-30% improvement overall, but I'm gonna have to withdraw that claim I'm afraid.

Overall, I'm disappointed and can't recommend Lenire based on my experience. I'd wait for Dr. Shore's treatment.

One thing that really pisses me off is that after six months of using Lenire my tinnitus is LOUDER after the session. Every bloody time! It does subside but it's very unpleasant for a few minutes afterwards.

I'm going to stop using it now until April and will see if starting again after a break does anything.

 

Hello people,

I've been using Lenire for about 6 weeks now, 30 minutes a day, this is my initial review. I'm taking a break from it already. My high pitch ringing is so loud that Lenire doesn't even come close to masking it, not even at the not recommended max volume. Again, for those that don't know, this is because of the OTO-313 trial that made it even worse than the monster it already was before. Because of this, I find each 30 minute session is torture, plus I get a spike after the session. I haven't really seen any real benefit from it either, so I'm probably not gonna use it anymore. At least for now, maybe if I feel like trying it again later, as in putting up with the 30 minutes of screeching and spike. It only made it worse temporarily around the 3rd and 4th week. It was back to normal by the 5th, but not better either.

A little info on me. As I was saying, the ringing is very high pitched and loud. Not sure exactly what pitch but it is over 9000 Hz. There are also some lower pitches in it, but are hard to find and not as noticeable as the high pitch ones in any environment. I also have a reel of different high pitch intermittent screeches that play in a never ending loop. It sounds kind of like a broken hearing test. It is somatic with my jaw and tongue. Gets much louder if I clench my teeth, can get one side quieter but the other louder by moving my jaw. Quietens a bit when swallowing or extending jaw in a weird way.

My tinnitus was originally mild/moderate and I habituated to it pretty quickly. Another loud sound made it way worse, to hearing it almost everywhere level. I was starting to habituate until I tried the OTO-313 trial. It made it even worse, so now the only places I don't hear it have to be very busy and noisy bar level / unsafe loud.

Even with this, I'm starting to get by a lot better because thankfully, I found a sound on Spotify blocks it very well, it's a track called Wind Chimes by tinnitus Institute. I use open ear headphones called AfterShokz playing this sound on repeat as a DIY masker. It has really been my way of beating this thing.

Back to Lenire, it seems to work for some, as for how many it helps and how many it doesn't, no one really knows, but that shouldn't really be the case as they honestly should have a better idea of that by now, especially with Dr. Lim on their team.

I say if your tinnitus isn't monstrously loud, it's worth a shot. If you don't have the money, it might be worth trying to save up for. If it is monstrously loud, it might be worth it only if you can put up with listening to it drilling into your ears for the 30 / 60 minutes you use it. If you feel you can wait until then end of 2021 when Dr. Shore is now thinking her device will be commercialized, save the money and find a way to pass the time. If I start using it again between now and then, I'll update on here and let you know how it goes. I might, I might not.

Take care, especially your ears.

 

6 (good stimulus) + 6 (bad stimulus) + 5 (good stimulus again) = 17 week update.

Bad news. It's been 5 weeks since switching back to the first (working) stimulus from the second (spike-causing) stimulus and my tinnitus is still aggravated.

Most of it is very quiet, so the good stimulus appears to have worked again, EXCEPT for one specific noise (which I got much later than the rest of my tinnitus). It causes no problems during the day because it's barely audible, but at night it often becomes shrill and sharp and causes sleep issues. I've checked my journal and I had trouble sleeping on 11 out of the past 35 days (31%).

I've been in contact with Neuromod and they advised me to take a 5-day break from the treatment.

My first 6 weeks with Lenire were really great and left me optimistic. It's a real bummer to have to pause the treatment after 11 week of toughing it out with the spike caused by the bad stimulus. But I've reached the end of my rope. I don't want to go any further without restful sleep especially in the face of the incoming Coronavirus epidemic.

I am certain Lenire works... but it can work both ways and it's trial and error right now. Hopefully, after the rest I'll be able to restart the good stimulus and be able to reproduce the excellent results of the first 6 weeks.

 

9 Week Update

I had the device settings changed after 7 weeks (just due to the the way the appointments fell). Not had any real negative reaction, it spiked my tinnitus slightly following the change but this was relatively short lived. I'd say the first week of the new settings gave more reaction than previously but this was less than during the first 6 weeks of use. Also had the firmware on the device updated and haven't had any glitching with the sounds since this. For those that are concerned about the settings change I'd say that for me it was like starting again but with the spiking not as intense or as long lasting.

On a positive note I'm experiencing more periods where my tinnitus is less troublesome and where I'm able to ignore it more easily. It does seem at this point that the new settings are starting to drive further improvement as planned, so overall I'm happy with the change and glad that this was done. Still sleeping better as well which helps. I've still maintained 100% compliance with the twice a day treatment and just do these as and when I can fit them in. I can't really say that I've experienced moments of silence as such, but I've certainly had times where I've been initially unable to hear my tinnitus but then find it through listening. I'm focusing now on trying to just forget about as much as possible which as I've said before is difficult and contradictory when you are thinking about when you can get the next treatment in. Take care all...

 

I’ll keep this as short as I can.

It’s been 6 weeks since I started my Lenire treatment.

I remember when my email came stating the day of my appointment I said to myself how lucky I was because of the intrusiveness of my tinnitus, the appointment date came at the right time.

I haven’t been using it like instructed for 1 hour a day, but instead I have been using it for 30 minutes and not doing the other 30 minutes on some days.

As of now, in the beginning my experience was really bad and my hyperacusis got worse but now I can feel a difference of 50% on my hyperacusis, and at least a difference of 30% on my tinnitus. I couldn’t sleep without a fan, but now I can.

I would say it’s a good treatment for people who live in Europe and have mild to moderate tinnitus. It can be annoying for people with hyperacusis because of the chirping sounds but my ears got used to the white noise and now I have no problem listening to the sounds Lenire produces.

 

This post is in response to the above post of mine.

I started using Lenire again, however unfortunately this only seemed to aggravate my tinnitus even more. After 4 days I decided to stop using the device.

Since then my tinnitus has been uncontrollable with it fluctuating between horrible and ok. I’m not sure if it is down to stopping the treatment, my anxiety or a noise trauma.

Either way it’s not great and I am slowly falling back into a pit of despair. I don’t intend on using Lenire now for a couple of months or at least until I have my anxiety and depression under control. I’m seriously considering a course of medication and therapy to try and get me out of this rut.

This will be my last post in this thread for the foreseeable future.

I would recommend anyone who has seen even a small improvement in their tinnitus from using Lenire to stick to the treatment routine past the 12 weeks mark and beyond to ensure they sustain any improvement.

Good luck and best wishes to all.

Josh

 

Started using Lenire about 3 weeks ago.

I had to quit the device after just 9 days. I am basically left with a whole new tinnitus tone in my left ear - a pulsating hiss. Same in my right on top of the t already present. Looks like the newly induced tinnitus is here to stay. I am not expecting it to subside.

The Lenire treatment sputters off a cascade of electricity through the tongue accompanied by a minor scale, white noise and some other sound component. It is a real tangible sensation. However, it is quite clear to me now that neuromodulation affects the nervous system, but its application needs a whole different level of sophistication.

It is hard to believe that this particular treatment is tailored to each patient, I found the appointments quite rushed and very little data was collected, just MML, THI and audiogram.

My conclusion is that neuromodulation definitely can be a treatment but there is great deal of different parameters and variables that have to be measured, adjusted and applied individually.

As a treatment for tinnitus, Lenire is severely wanting.

 

So I'm midway through week 8. Clearly I won't be going back to Ireland anytime soon for a program change. As a reminder of my case I had a sudden unexplained, though likely a viral attack, hearing loss and severe tinnitus. I literally went to sleep at 11 pm normal and woke up at 2 am with my life changed.

Above 4 kHz my initial hearing loss was up to 55 dB as a notch at 6 kHz, with 40-45 dB on either side. Below 4 kHz normal range hearing. My hearing has recovered considerably about 8 months after initial onset. I no longer have a notch and hearing loss now runs 30-40 dB above 4 kHz. Crickets, crackles, fuzz, hiss static.

My tinnitus was loud enough that it was functionally 24/7 unmaskable and by month 9 my range was moderate tinnitus on good days to severe tinnitus ~30% of the time on bad days. Again both on good and bad days it was generally the loudest thing in my environment. I hadn't gotten any better, though I had gotten better at living with it. When I went into Lenire they measured by MML at 54 dB which was on one of my best all time days.

So I've been religious about doing the treatment. I switched a couple weeks ago to just doing an hour straight instead of 30 minutes in morning and night.

I still have tinnitus. It is significantly less bothersome than it was. My range is now from the high end of mild, meaning it can be nearly or entirely masked in a noisy room, to moderate on a bad day, meaning it is loud enough that it can't be drowned out by anything and has some annoying components. I tend to have about 1/3 of my days on the mildish side, a 1/3 on the moderate and 1/3 in between. I still can have the occasional severe evening, but it is really quite rare. In general I have less crickets and crackles and more fuzz. It is also in general quieter, for example maybe for my first 9 months maybe two times I couldn't hear it in the shower now probably a 30% or more of the time I can't hear it in the shower.

So my review so far is that I am doing better, not perfect, not enough, but enough that it was worth it. Can I swear that this isn't improvement or habituation that was going to happen anyway? Nope But I hadn't gotten one bit better symptomatically until I started the treatment, and now my symptoms have modestly improved.

In terms of new sounds that some users report. Yeah maybe I had some, but I had such a cacophony of horrible sounds to begin with getting another one never bothered me. That being said any new sounds were very short lived.

I'm going to continue to use the device. I might take a week break at 12 weeks, but then I'll keep going until my mouth piece dies.

Someone please send Susan Shore some Purell.

 

Week 10 Update

I am on their newly suggested appointment schedule of going every 10 weeks. I was supposed to go to Ireland Monday of this week, but obviously that isn't happening. I have had zero change in my tinnitus. I have been compliant with doing treatment two times a day. I try to do it at the same time daily, but that can be tough. I have missed one day over the 10 weeks because I had a horrible head cold. I briefly had some email conversations with Neuromod and they suggest I keep using the first timings until I can get back to Ireland.

It would be nice if they could figure out a way to do remote timing changes. It would also be nice if they would do a better job of communicating what is going on. I have to imagine they have a lot of clients that currently can't travel and there really hasn't been any communication unless I have initiated it.

I'm still trying to remain optimistic and will continue my treatment. Hopefully, over time I can get some relief.

 

6 (good stimulus) + 6 (bad stimulus) + 5 (good stimulus again) + 4 (off Lenire) = 21 week update.

I've been off the treatment for 4 weeks now. The spike I got during the bad stimulus (which, unfortunately, remained even on the good stimulus) went away 2 weeks after stopping. My tinnitus has been roughly at the pre-Lenire baseline for 2 weeks now.

Funnily, the old baseline seems pretty loud now.

My 1990 noises (with which I've lived for 30 years) were beautifully suppressed by Lenire and 4+ months have passed since I heard them at their original volume. Yesterday we were watching a movie and I could clearly hear the tinnitus screaming over it. The last time this happened was back in November. It's like watching a child grow: if you see her every day you don't really notice (so I didn't really notice the gradual reduction in volume as it happened), but if you don't see them for half a year, it's dramatic (I notice it really well now that the reduction went away).

My 2016 noises (to which I'm kinda used by now but still cause anxiety) have been behaving themselves fairly well. These were the ones that Lenire spiked, which in turn caused sleep issues on roughly 1/3 of all nights. Over the past 2 weeks after the spike has ceased I only had 1 tinnitus-caused bad night.

I'll wait another 2 weeks. That'll mark 6 weeks since I stopped treatment, and 4 weeks since the spike went down. That should be a good, long washout period. Then, I'll restart treatment with the good timing. In another 6 weeks (so by the end of May) I'll know whether the good timing worked again.