Lenire — User Experiences and Reviews

[Cojackb]

In the last few months I've had my final appointment with Neuromod, packed up my life in the UK and moved back out to New Zealand to pick up where I left off about a year ago.

During this time I'd not touched my device very much at all and due to a significant spike (for reasons unrelated to Neuromod) I've not touched it again quite recently.

HOWEVER, once I'd settled back in over here I got stuck into the treatment doing two 30 minute sessions a day. For the first time since I took up the treatment, I experienced two individual windows of almost silence in the same week as continuing the treatment.

I'd say for me, this is evidence enough that the treatment can have a positive effect. I've never experienced moments of quiet like that throughout the last year, which would suggest the likelihood of it being a coincidence to be very slim.

The other thing I'd like to add is the way my tinnitus behaves on the newest program. During the sessions my tinnitus fluctuates and "reacts" with momentary spikes and changes in tone/frequency. This is something that's not happened with any other program that Neuromod applied to my device. This further reinforces what Neuromod say about finding the right settings for each person... it is a matter of trial and error but you'll know once you're there!

Unfortunately due to my own negligence and changes in tinnitus following on from very long flights, my commitment to the treatment has wavered. I fully intend to get back on top of this but have some habituating to do first!

 

[hans799]

Week 6 update.

Writing this actually right from Neuromod's waiting room, where I just had my first follow-up appointment.

The tinnitus has gotten quieter. It varies day to day but I get an anomalously high number of quiet days, and I often don't hear it in environments where I heard it before.

Strikingly, it has also gotten a lot less reactive. We had our office Christmas party a few days ago. I monitored the noise level constantly; it was around 75-80 decibels, so fairly noisy, but not dangerous, so I didn't use ear protection. I drank a lot, and shouted myself hoarse during karaoke. Previously, this would have earned me a huge temporary spike. This time, not a thing. It stayed at baseline, and the improved quieter baseline at that. Is this how normal people's ears behave during a party?

Finally, the numbers. Minimum masking level both at the first appointment and at the second (device fitting) appointment was 10 dB. Now it is 6 dB.

Lenire works. I have had mostly unchanged tinnitus for all my 31 years so this'll be my quietest Christmas ever. Wishing all of you a "Silent Night" for this holiday season!

 

[Redknight]

20 Week Update

Wow, how has it been a month since my last update!

Still much the same as last time, although I only get tinnitus now about once a week, usually if my sleep has been crap or I've gone somewhere noisy. Normal days I don't get tinnitus anymore, or at least it's so quiet I wouldn't notice it unless I went looking for it.

I've cut my sessions down to 1 x 30 minutes in the evening, which Caroline suggested when I asked how long I should keep going for. I'll finish off this tongue tip as planned and take a significant break before restarting.

I feel like Lenire is just something I do now, I don't really consider an end to it unless my tinnitus completely disappeared.

For the stat nerds out there, I've been keeping a treatment diary. Maybe someone who's better with Excel than me could do some sort of compliance chart or something. These are 30 minutes sessions unless stated as 1 hour. I was attempting to do a session at 12:00 and one at 21:00.

Treatment Diary

 

[ruud1boy]

I'm another 6 weeks further down the line - so that's 18 weeks in all I think. Still nothing - bah!!
I have had one day since I last posted when my tinnitus was better than pre-Neuromod, so all told I think that's maybe 4 days out of the last 4 months where my tinnitus was better than it had been before. Doesn't really feel justified to consider this as an improvement, but I guess technically it is.

 

[alanisnotadj]

Hello everyone,

I have been using Lenire for 24 days and I guess it is time to let you know how it is going.

But first a little background information about me and my tinnitus: I first got tinnitus in 1992 when aged 17. I went to see a band called Ride (noisy/shoegaze music). I left the concert venue with intense tinnitus and pain in both ears but I was lucky to be seen by an ENT withing 48 hours who gave me steroids that reduced my tinnitus to almost zero. The pain disappeared as well and I was only left with tinnitus that I could only hear at night.

After this, I carried on clubbing and attending concerts pretty much every week of my life but with hearing protection. My ears were always ringing after gigs or nights spent in nightclubs but things would go back to normal everytime.

I had a second acoustic trauma in 1999 after forgetting my earplugs in a nightclub, but once again a round of steroids saved me and I was back to « tinnitus only heard at night » level. For the next 19 years I kept abusing my ears with hours and hours spent in Berlin nightclubs listening to deafening techno and noisy concerts... everything was fine (or so it seemed) until last year when I was caught off guard in a restaurant in Armenia where a local folk band was playing. I did not have my earplugs with me and on leaving the restaurant I could tell something was wrong with my ears (unusual loud ringing and pain). I spent a week there hoping that the ringing would disappear but it did not and, fatal mistake, I flew back to Germany with my ears in this terrible state. The flight back was awful as I had a barotrauma which made the ringing ten times worse as well as giving me hyperacusis in my left ear.

Went to an ENT once I was back home but this time it was too late and the damage was done. Steroids did not work apart from clearing an infection which had developed in both ears. Hearing tests showed very little loss in the normal range (but I can't hear anything above 9k).

13 months later, before I started using Lenire:

• the pain from the hyperacusis was almost gone but it kept coming back from time to time.
• my tinnitus was super high pitched, I heard it almost everywhere and it reacted a lot to external noise.
• my tinnitus was also extremely somatic to the point that I found it impossible to run or do any sports apart from swimming.
• I had tried everything from supplements, to WNGs, to acupuncture, etc... with zero results apart from curcumin which seemed to help a little.

And now 24 days after I went to Dublin to pick up my device:

The first week or so I did not see any changes in my tinnitus (apart from the short lived spikes that everyone seems to experience) but around day 10, I noticed that my tinnitus was extremely quiet which was a first since that fateful October night last year. It wasn't gone of course but the noise was reduced to such a level that I thought to myself « Hey I could live like that ». Later on, after going out for some shopping, the tinnitus returned to its normal level.

This up/down behaviour has been pretty much the story of the last 2 weeks, but I am starting to experience more and more quiet (and longer) moments, especially when I am at home in a calm environment. I watched "Elephant Man" yesterday evening and did not think or notice my tinnitus for a single moment. Nice.

Has the volume decreased? My answer is "yes" however it is not yet permanent.

My tinnitus is still very somatic and I still can't run without making it (temporarily) worse.

The other thing that would like to talk about is the loudness of Lenire. There has been times where my left ear has felt uncomfortable during my daily sessions. Not unbearable pain but enough to make me feel worried. However I have soldiered on and the pain has always disappeared and I now feel more and more comfortable using it.

It is still early days but I am hopeful that I am going to experience permanent improvements.

It is frustrating that the tinnitus is going back up again everytime I am experiencing an improvement but overall it is less intrusive and extreme compared to when I started the treatment.

It feels like it's going to be a long battle but one I might win.

 

[RODRIGO]

Hi,

I have had tinnitus for almost 7 years, since I was 45 years old. Probably due to listening to music with headphones. I have no hearing loss, except for -25 dB at 4000 Hz in one ear, and the audiometry was repeated almost 7 years later.

Since then I have taken good care of my ears, but I have had constant bilateral tinnitus, high pitch, with periodic breaks in intensity.

I've tried everything: drugs, rTMS, CBT, neurofeedback, acupuncture, TRT, mindfulness, etc...
I find my tinnitus to be stable along with some bad days.

My first week with Lenire:

Using the device is very simple. I don't get any bad sensation in the ears from Lenire's sounds. I use Lenire one hour (one session) every day. It is true that at the end of the session my tinnitus is loud, I think this is due to the contrast with the silence again, and the brain intensifies the tinnitus more.

This week has been very bearable, without tinnitus spikes, and sincerely it has been a week of good days, without the tinnitus taking away much attention from me, or bothering me a lot.

I don't know if this is placebo or if the treatment is working, but I am happy and hopeful that it is an effect from Lenire.

I will share my progress with you!

 

[KotaDomowa]

I have been using Lenire since November 26, 2019.

Has it helped me? I cannot say. I suffer notably less, and this would suggest that my tinnitus is quieter (for 22 months I strongly refused psychological methods, I am not susceptible to such a thing, so I doubt it is a placebo).

Today I am scared and depressed again, which means my tinnitus must be louder.

Or maybe the better days are the result of the fact that I am slowly beginning to take into account that I have to accept that I will never be healthy again? That I should try to find a way to live a life sentence, because it will never be as good as before my 22nd birthday?

But no... This perspective always caused panic, not peace.

I don't know how to interpret it all.
I really don't know which version is real.

 

[Mentos]

I just finished week 4 of using Lenire.

Tinnitus usually spikes for 15-20 minutes after each session, then it gets back to baseline.

Tinnitus is still there, sometimes less bothersome, sometimes more.

There are hours/days when I function without masking which was not the case before Lenire, so this COULD mean an improvement, but it may also be placebo, I am not able to judge.

I need to measure MML to be 100% sure if my tinnitus level went down, this will happen on January 17th at my 6 week review.

Overall until now I am not satisfied with the treatment results.

 

[RODRIGO]

Hello!

I'm sharing with you how these last 10 days have gone with Lenire for me (18 days in total).

The first week was fine, as I shared in the previous post, no spikes and quiet tinnitus. It didn't bother me much, less than usual, paying less attention and having less discomfort

In the second week my tinnitus spiked for two days. I told about it to Neuromod and they told me that it was very normal, that I did not need to worry about fluctuations.

After the two-day spike, my tinnitus returned to a less annoying level than it had been in the last few months.

My impression is that the tinnitus is there, but it's easier to forget about it, and I focus less on it.

I don't know if it's placebo, or just having a good period of tinnitus, but at the moment Lenire makes a good impression.

I'm waiting to find out if it's the result of using Lenire or because of other causes.

Best regards.

 

[jmasterj]

I just wanted to update everyone since I got back stateside yesterday. I received my device on Friday and everything went smoothly.

I was able to do treatments for the first three days, but with traveling I haven't been able to stick to a schedule. Now that I am back I will really stick to it starting tomorrow.

A couple things of note for everyone. I was told the tongue tip is now rated to last 320 hours or 320 days of treatment. I believe in the early stages they were recommending less.

Also, I asked to move my follow up appointment and they suggested looking at 8 -10 weeks for the follow up instead of the six. You can certainly keep it at six, but I am wondering if they have found something different. I am not sure. It was just suggested to me. It makes my life a little bit easier since I have to travel so far.

As far as my tinnitus goes, since this has been discussed a lot in the other thread, my tinnitus is very somatic. I can modulate it with jaw and neck movements. I have mild hearing loss in the upper frequencies, being on the edge of moderate at 8 kHz. I have perfect word scores and my MML was 48 dB. Real world it takes about 70 dB to mask.

Hopefully, this helps those with questions and I will follow up again in three weeks.

 

[thescientist]

I have been using Lenire now for 2-3 months.

A doctor told me that it might not work.

I have not noticed any improvement in my tinnitus so maybe it is not going to work for me at all.

Yes, I would say that Lenire is most likely to be a placebo treatment and we know that placebos will work around 50% of the time in clinical trials.

It's interesting that they do have the data from the trials but publication will not be for 2 years - if the data is that good Neuromod should be rushing out to publish it I would have thought rather than delaying.

It's also interesting that the sales staff encouraged me to pay the full amount upfront, presumably in case to dropped out of treatment.

I also do wonder what the 6 month dropout rate is on treatment, it must be quite high, possibly at least half based on Tinnitus Talk - presumably the other half that didn't drop out are those that experienced the 50% placebo response

Perhaps I could have saved my money for something else.

 

[ruud1boy]

I'm 5 months into my Lenire treatment now and I've been 95% compliant with the treatment protocol - 30 minutes, twice a day, around the same time every day.

My tinnitus is largely unchanged I'm afraid - but... I don't get anywhere near as upset as I used to do by it. On 'good' days, I can still hear it, as loud as ever, but it's just a PITA. I have had a very small number of 'better than good' days, but 4 days in 5 months doesn't seem worth documenting. The difference I'm seeing is on 'bad' days - when it's as loud as fk and a year ago I would have been having tearful meltdowns, now I'm just really annoyed and fed up of having to endure the torture.

Is this progress? Yes - I'm able to cope with my tinnitus better than before.

Is this anything to do with Lenire? This is the big question and I can't answer it - 'cos I don't know. I'm 3 years in to my journey with severe tinnitus - maybe I'm just getting used to it? I reduced my hours at work a few months ago, as a result of my tinnitus - maybe that's doing the trick? I just don't know.

Would I recommend Lenire? If you're located within a cheap flight's distance and you have the funds available - yes. It might work for you. If you're travelling from outside Europe and / or you're struggling to raise the funds - no. There isn't enough evidence that it's effective to gamble that much cash on, at best, a 20% chance.

 

[Mentos]

I just finished my six-week follow up appointment.

MML today 14 dB.

MML was 8 dB at the first visit so it's now worse by 6 dB but I have a clearly louder day today.

THI today 36 pts.

THI was 42 pts at the first visit so that's an improvement of 6 points.

Overall I rate Lenire has had no impact on me, good or bad, till now.

I will continue my treatment with new settings.

I met an elderly lady at the reception, she was part of the clinical trials 1.5 years ago. She has had tinnitus for 6-7 years before starting the treatment, she said that after 3-4 months of using Lenire her tinnitus was totally gone and remains like that until now.

She said also she observed no changes for the first 2 months of using Lenire and I should keep using it because it works. Let's treat that as anecdotal evidence that Lenire can work for some.

I forgot to mention that I also asked about overall duration of the treatment, they explained that Lenire is a long term treatment and 12 weeks was only applied for the clinical trials, but it should be continued for months, up to a year, there's no fixed duration.

 

[pinklights98]

I've been using Lenire for about two weeks now and although I know it it is too early to post a review, my tinnitus has taken a turn for the worse.

My tinnitus is noise induced. I have zero hearing loss, extremely somatic tinnitus, and mild hyperacusis.

Since using Lenire. I have developed new tones that are extremely high pitched and my old tones are still present. After a treatment, my tinnitus elevates to such an extreme that I am unable to sleep the entire night. It is not simply the fact that my tinnitus elevates, but rather the extremely high pitched nature it takes that makes it unbearable.

I have spoken to Neuromod and they have advised me to decrease my sessions to one 30 minute session a day, however this has not changed anything for me. I am very close to quitting this device as its effects on me are quite unbearable.

One last thing that is weird is that Lenire has made my tinnitus reactive to sound therapies on YouTube, which before would provide me relief. Now these therapies just trigger the extremely high pitched tone that developed due to Lenire.

I am very sad as I thought Lenire would work on me. I know people are going to tell me to continue using it and I'm going to try but it's very difficult to continue using a device that makes your tinnitus 100x worse with no alleviation. I'm not sure when, if ever, it will calm down.

 

[Annpann]

I have just completed 4 weeks of using Lenire.

I have found that the treatment sessions do elevate my tinnitus somewhat. I believe that this may be part of the treatment as explained in episode 7 of Tinnitus Talk Podcast with Ross O'Neill. He explains how it disrupts the maladaptive networks in the brain similar to the effects at the onset of the tinnitus.

I still have tinnitus but woke up in the night on the 17th January with complete silence which is the first time I have experienced this since the onset. I had a similar experience last night.

I think this treatment may take some of us a while longer than 12 weeks and I am prepared to carry on with the sessions for as long as necessary.

I am due back at the clinic at the end of the month to have the settings changed for the next 6 weeks.

I would like to add that the staff at Lenire are extremely helpful and supportive.

 

[AfroSnowman]

Just got the device and did my first session. I'll do an update in 3ish weeks or whenever something of note occurs.

The only thing I'd add to what's been said is that I was a bit concerned that the audio part of the therapy would be unpleasant or just a white noise. Nothing could be farther from the truth. Some organ music and a light rainish white noise background (or maybe that was just my tinnitus) with occasional variations. Perfectly pleasant and relaxing though I imagine I will soon be bored my it.

I could feel the slight timing offset between the mouth piece and changes in tone.

That's it. Wish me luck.

 

[Krolo]

Sort of 9 week update.

Let me start by saying that the last few days have been quite quiet. Quiet like never before my huge spike in September 2019. Still quite far of from how I had it before. Now for the rollercoaster ride and some thoughts.

When I travelled for my 6-week follow up I still had a little cold and flu. This made my hearing test a little worse since I was a bit tired and felt that my ears didn´t respond as good as after the trip. I also flew in on the same day as the meeting and not the day before as usual.
They changed my setting to the 4th program as for most of everyone else at the 6-week follow up.

My MML

• 1st visit - 38 dB with a cricket sound that couldn´t be masked and my hyperacusis felt this was already an uncomfortable level.
• 2nd visit - 45 dB with cricket sound almost fully masked and didn´t get disturbed by the sound level.

The changes to the unit had a stronger white sound masking noise which I believe has to do with the change in the hearing test. Could also be the MML but when I asked about this they said that is just for measuring and not for setting up the unit. I also asked to raise the strength of the tongue stimulator.

Week 6-7
I would say that my tinnitus did take a turn for the worse here and I felt that the new settings didn´t really do much positive.
Did some self-medication with GABA tea and lots of beers which kind of took the edge off the day after.

Week 8-9
Decided to tinker a bit with the settings. Tried raising the volume by 2 lights and also raising the stimulus by 3-4 lights.
Also decided to keep the volume at 2 and the stimulus at -4.
Also changed positions of the tongue stimulator
Also paused the treatment for a total of 2 non-consecutive days. This brought on an interesting improvement.

I did have a weird sense that when I turned up the stimulus that the cricket sound got more agitated and also felt like it did overstimulate and caused sounds to appear that weren´t there.
This has been something that I have experienced with Lenire most of the treatment.
New sounds appearing and old more irritating sounds disappearing. I do now, as of writing this, have one very very high pitch but yet thin sound in my left ear and a smaller version of it in my right ear.

My anecdotal conclusion 9 weeks in

• Lenire has done quite a wonder on me and is definitely worth it
• There have been many ups and downs
• Learned not to react to these ups and downs, the trend is positive
• Position of the tongue stimulator might have something to do with where it hits in the brain
• Intensity of the tongue stimulator might have something to do with treatment outcome
• Doing 2 sessions one after another or just 1 session per day seems to give me more peace and less agitation
• Pausing treatment for a day for the first time since starting felt like it somehow had a good effect
• Still have loud tinnitus when waking up but that is mainly because of a quiet room during the whole night

Questions
Would be interesting to see how and where the electrical impulses go and how the intensity has an effect on that part of the brain?
Why would positioning of the tongue stimulator not matter?

Other substances involved
Apart from Lenire I have used a few supplements and medications as needed

• Melatonin for sleep
• Armodafinil for focus and energy
• Beer
• GABA tea
• Nicotinamide Riboside
• ALCAR

There might be some interactions with the above and the Lenire but for me it´s just about doing what is necessary to be in a working focused state. The more focused I am on the outside world the less focuses I am on the tinnitus.

When I sit and write this, as I sat here yesterday writing something else, I am happy that I have these days of bliss.
May they long continue and get better.

Thanks for reading and may you all get better!

 

[AfroSnowman]

A quick note I wanted share about my experience. I have been doing Lenire for a week now and have had no spikes either immediately following treatment sessions or any worsening in general. This was a major concern of mine going into this treatment based on some users' experiences and I just wanted to share this positive data point with anyone that may be making decisions on whether or not to try the treatment.

I will withhold other observations until week 3.

Peace.

 

[hans799]

Week 12 update, following my 2nd checkup at Neuromod.

Quick recap, at Week 6 I reported that my tinnitus has been lowered significantly, which was also objectively measurable, as my MML went from 10dB to 6dB.

Per standard procedure I was switched to a new stimulus at Week 6. Unfortunately, this one didn't work out so well; it has spiked one of my tinnitus sounds (the newest one which I've developed in late 2016) and the spike is still present. I'm not very worried, though; my overall volume is still lower than it used to be (MML is now 8dB), and Neuromod says that this is an unlucky but otherwise normal occurrence that reverting to my old stimulus should fix.

My official treatment period is now over. However, Neuromod said that I should definitely keep using the device, they will keep on supporting me via email or telephone if I have questions, plus we have scheduled a new appointment in January 2021.

Overall, I feel positive about Lenire. The device definitely does affect tinnitus. It is definitely capable of lowering its volume, as demonstrated during my first 6 weeks. Some stimulus settings can backfire, but that was a known risk.

The real question is will going back to my original stimulus (codename PS1, by the way) eliminate the spike and get me back to the blessed state I was at Week 6? I believe it will and I think it should happen within 2-3 weeks. Stay tuned; I'll update you once there's something meaningful to report.

 

[Rigsbin]

3 Week Update

I'm just past 3 weeks now using Lenire and thought it would be apt to provide updates at 3, 6, 9 and 12 weeks in line with the appointment dates.

I have tinnitus mainly in the left ear, probably caused by age related hearing loss (I'm 49) and not really looking after my ears when younger, though I've never been big on wearing headphones. I would assess my t as moderate, in that I can function with it, but it bothers me enough to try and do something about it (hence finding this forum and hearing about Lenire). Tried hearing aids and couldn't get on with them in the past. I have generally sought to just live with it and forget about it and I suppose overall I make a conscious effort not to let it overshadow my life in general. However I do crave moments of silence, especially when outdoors fishing when I just want to sit peacefully and relax. Given everything, I would expect to be a good candidate for Lenire.

I've kept a 100% record with doing 2 treatments a day and tend to do one late afternoon and one early evening, often with only a short break between. Initially, I noticed a definite change quite quickly whereby my t quite quickly changed from a hiss to a higher pitched more pure tone. It has been reactive after treatments the same as other users have reported. I found Week 2 quite difficult in terms of reacting and increased noise, but figured this was to be expected and it was evidence of something happening. Also had a bad tooth during this time that will need a root canal, but I had this partly before Lenire so not related, but just something else in the mix. The biggest problem I've had is staying awake during treatments! If I sit scrolling and reading it's fine, but if I just try to sit and relax it sends me straight off.

I spoke with Lenire yesterday as they rang to see how it was going and all I can really say at this time is there are glimpses of improvement. I've had a few moments where I've stopped and listened to see if it's still there (it was - but less intrusive), which is positive and had one moment in the barbers last Saturday where I really couldn't hear anything for a short time and it wasn't a noisy environment. I do think that part of the problem is that when going through the treatment it's a pretty constant bombardment on the ears with little chance to recover, however I recognise the need to keep the stimulation up. Also, being focused on doing the treatments and self monitoring improvement means it's less easy to try and just forget about it. I'm conscious that people are hoping for more encouraging reports, but at 3 weeks I'm not sure if much more than what has happened so far can be expected. Will see where I am at 6 weeks and report back then.

 

[pinklights98]

Three Week Update:

I have had the device for just over three weeks now.

Quick Summary of My Usage of the Device:

First Week: Used twice a day, like instructed.

Second Week: Tinnitus went crazy, became unbearable, had to cut down to once a day.

Third Week: At the start of my third week, I randomly got a severe earwax impaction where my hearing in my left ear greatly decreased, so I saw little point in using the device. I began using it again last Thursday(once). Since last Friday, I have been using it twice a day.

Details:
Just wanted to give everyone a quick update. I'm back to using Lenire twice a day. I didn't notice a difference in my spikes by cutting down use to once a day, so I decided to give it a real shot so I can give a real review at the end of twelve weeks.

This is long, so bear with me.

Since restarting Lenire last Thursday (stopped using it for a couple days due to ear wax impaction), the worst tone I have (primarily in my right ear, caused by a car alarm in June 2019) has elevated a lot. In fact, each consecutive day it has increased. This tone fluctuates greatly--seems to have a mind of its own, so I am trying to stay hopeful that it will go back down.

I want to add something of note about this tone: the first week I used Lenire, this tone decreased a lot. Like a LOT. But I also had the flu that week, so it's possible that the flu did something to my brain that made this tone go down. The reason I say this is because it started to reappear as I got over the flu. Very weird, but disappointing as I was really hoping it was due to the device. And as many of you know, by my second week the high pitch tone (device-related) had appeared so my overall tinnitus distress was very high at this time, and I was considering quitting.

Where I am at now: Every time I use the device, within about ten seconds of using it I hear the very high pitch tone get aggravated and I hear it throughout the session. I am certain, therefore, that it is due to the tongue stimulation and not the sounds from the headphones. When I first start a session, I feel some minor tongue stimulation and I think this is what triggers the tone. Once the session ends, it is very loud. However, I now expect it and it doesn't cause me as much anxiety as before. On some days, the tone sticks around and on some days it does not.

Concluding Remarks: So as of right now, no improvements. Three weeks in, but for about a week of that I was using it only once a day and I stopped using it for a couple days last week because of earwax. So I am still holding out hope. I think this crucial for me to say: I do not believe that the new tones Lenire causes will be permanent. During my second week, my reactivity went crazy up and it was too much for me to handle. This has calmed down. I can use masking sounds again.

I still am holding out hope that somehow the reduction of my bothersome tone was due to Lenire, but its seeming less and less likely as it continues to get louder each day. Also, the chances of a tone reducing that quickly into the treatment seems implausible. I am not going to lie though, all this fluctuation and new tones appearing and disappearing has been very exhausting.

P.S: Please take this with a grain of salt, as I may be completely off-base here. Since my tinnitus became intrusive in June, I gained a LOT of somatic elements. If I push my jaw forward or to the left, a piercing high pitch tone appears in my left ear. This is odd, as my left ear is my "good" ear. This tone is pretty similar to the one that Lenire causes. My thinking is perhaps Lenire isn't causing an entirely new tone, but is aggravating this somatic tone. I do not know if this is a good or a bad thing.

I understand that this all seems quite confusing, so I am happy to answer any questions in the other Lenire thread if anyone has any.

Best wishes!

 

[Josh1994]

I have been using Lenire for about 6 months now and I am certain it has lowered the pitch of my tinnitus and also turned it into a hiss (originally a pure tone). For the first time ever I felt I was habituated and that my tinnitus no longer bothered me at any point throughout the day.

I decided to stop using the device about 2 1/2 weeks ago to see what would happen. The first week seemed good and my tinnitus didn't change.

Fast forward to today and my tinnitus has sadly gone back to what feels like pre-treatment levels and has been like this for the past 5 days. Now this could just be a spike, however I rarely get spikes and most of the time they are not from noise but anxiety or stress. I'm uncertain what to think at this point.

I have discussed this with the audiologist at Lenire and they think it is down to stopping treatment and that maybe I wasn't quite ready to stop. With this in mind I have started using Lenire again today in the hope my tinnitus goes back to what it has been, however I am extremely nervous that using headphones will make the spike worse, if it was originally a result of a noise trauma. I guess I have to bite the bullet and just find out for myself.

I will keep you updated with how things turn out.

 

[jmasterj]

3 week update:

I thought I'd post a three week update. I don't go back to Neuromod for another 7 weeks, since they are now suggesting 10 weeks between follow up appointment times.

I have missed one treatment due to traveling during the first three weeks. Otherwise, I have done my best to make the treatments on the same time everyday.

I do find that my tinnitus gets aggravated after the treatment. Sometimes it lasts for a short time and other times it can last up to two hours.

Thus far I have had no improvement and some days it feels slightly worse. I will mention though that the last few weeks have been very stressful in my life, so that could attribute to it. I am still optimistic and hopeful this will make some improvement. I think it is just going to take some time and of course everyone is different.

Hopefully in the next three weeks I will have better news.

 

[Lurius]

Ok, guys, I'm back home again. This has been quite the eye opener. I had some positive and negative experiences over the last days. The most positive was obviously, that I got accepted for the treatment and that I met a forum user in the Neuromod clinic that I have befriended over the last year. It was wonderful to finally meet her and her family.

When Neuromod sent me their initial email, it said they were in the Hermitage Clinic Suite 28. However, they have since moved to suite 36. I didn't know this, so I spent half an hour walking around like an idiot looking for them. They hadn't even heard about Neuromod in suite 28 so I was struck by a feeling of complete puzzlement. Fortunately, my friend could show me where they are located.

The Neuromod team is extremely nice, forthcoming and professional. I felt like a king most of the time.
They do ask some tough questions though. They ask about anxiety, depression and drugs. They asked me a very direct question about suicidal thoughts. They ask a lot about your Tinnitus obviously, how and when you got it and stuff like that. There's also a hearing test, which I was super nervous about. The reason is that I did a hearing test with my local audiologist just two weeks ago and that showed that I had a dip of 60 db in the 6000 Hz frequency in my left ear (which is where I have tinnitus). The new test I did in the Neuromod clinic showed the same result, but also the same dip in the right ear. When I saw that result, I got some very dark thoughts and thought it was all over. But no - I was accepted after all. Happy day! My THI score was very low, only a meager 38. I also touched on all the things I've been trying since my onset (Osteopathy, Chiropractor, Acupuncture, oils, salves, TRT, meditation/Mindfulness, white noise etc). So her reasoning was that since I've tried all of these things already, there is no use for her to recommend them to me and I should be allowed to try Lenire.

The most negative aspect of the trip was twofold. My Visa fucked me over and I had to pay 90% of everything with my MasterCard. I need to make a call to my bank to figure out what went wrong because I cannot have this happen when I'm going to pay for the Lenire equipment. I go back sometime around the 26th to pick it up. Another annoying aspect was that I got some really noisy neighbours in the hotel. They kept it going well into the night. It was really hard to sleep. I wanted to complain but I've done that before, to no avail. So I just gritted my teeth and tried to ignore it.

I've given some thought to what this lunacy is... who crosses the ocean four times just because of a noise in my head? And pays that much money for it? What is this craziness? Well, that's what tinnitus does to you, I guess. It's going to be a rough ride but I'm prepared to take it. I believe in Lenire and I think I have good odds of getting some kind of positive result.

 

[Paul Betteridge]

During the initial 12 weeks of treatment my tinnitus went up and introduced a new frequency, so now I have 2 tones in the left ear and 1 in the right ear.

Neuromod then reprogrammed the device and the resulting next 12 weeks is that my tinnitus is through the roof, to a point that it is waking me up during the night and totally disrupted my sleep.

I am now so desperate that I am on antidepressants and don't want to say where my thoughts have taken me to, but you can probably guess. And all for €2k plus cost of flights etc just to be used as a lab rat to further their data gathering.

They want me to come back for another reprogramming and as you can imagine the thought of it ramping up even further scares the life out of me.

My life is now ruined.

 

[AfroSnowman]

Here is my 3 week check in.

So my case is that I got SSHL last April due to a virus. I appear to have significantly recovered from the hearing loss (55 dB at 6 kHz now at 35 dB at 6 kHz). My tinnitus has been symptomatically severe, meaning 24/7 high pitched functionally unmaskable. Lots of crickets, electric shocks and static. Relatively variable, but usually going on multi-day higher and lower streaks. I was dealing with it relatively well, habituating as well as could be expected with my symptoms. I felt a relatively small difference existed in volume/pitch/sound quality between my challenging days and days that I felt that I could live with. I was aware of my sound probably 95% of the time. When I went in for my assessment it was a remarkably quiet, almost guiltily quiet day and MML was 54.

I have very modest spikes after using for <30 minutes. Sometimes it is actually soothing instead of spiking. Nothing scary in the least has happened to me so far.

Hard to say exactly what the difference is as I only have a couple of objective markers to measure by: shower, traffic, motorcycle. Though I have had 4 occasions over the last 3 weeks where I found that the above masked it (above the 1 per month rate previous to treatment beginning). I find more often that it is almost masked by these scenarios. For example, do I hear it in the shower, maybe, barely, oh there it is, where before I just heard it in the shower. Could this be just my attitude? Thus it is too subjective to really hang my hat on. Hard to objectively claim a difference in such a subjective experience.

My high notes: Twice in this period I couldn't hear it for up to an hour in a noisy room. Though I'm sure I could if I tried, this was exceptional for me as I had not experienced not hearing it clearly over everything since 2am April 16th 2019. Also of note I am probably aware of my tinnitus more like 35% of the time instead of the 95%. Cricketing and other moving sounds are very rare now. Much more static and hissssssssss, which is way better

So I've had a couple really good days, some days that were at baseline and maybe a couple few hour periods where it was challenging. Overall in my completely subjective assessment I say my experience is in line with Lenire claims of modest improvement. If this is all I get out if it I will be satisfied that it has made it more bearable, mostly keeping it below that critical threshold where it is challenging. If I can get to a norm where a noisy room can drown it out I will herald the virtues of this treatment from the mountain top.

All that being said I am looking for more periods in the shower, traffic, motorcycle that drown it out so I can objectively claim a lessening of symptoms.

BTW I am writing this while having an exceptionally quiet morning so I may be spinning this a little more positively than I would otherwise.

I'll check in at week 6.

Peace love and good luck.

 

[TinMan2019]

Hi, this is my final post in this thread.

I bought Lenire back in July 2019. I used it every day for an hour and had all the follow up visits, which was an expensive venture, given I'm US Based.

Unfortunately I gave up using Lenire around late last year.

While I initially thought that I perhaps had some improvement in the first few weeks, it was short lived, and my tinnitus has had no real significant improvement for me overall. So I decided to just stop using it, hoping that maybe once I stopped I'd maybe start to see improvements. That hasn't been the case. So anyway, I'm throwing in the towel. I had high hopes for this bimodal treatment. But I guess it's just not working for me.

Here's hoping to a cure in the future. Best of luck everyone.

 

[Shelly75]

I began using Lenire in July 2019. I used it exactly as prescribed for the first 12 weeks and didn't miss a single session. I noticed immediately that the device spiked my tinnitus to a very high level straight after using it so I chose to do two sessions back to back in the evening as I couldn't cope with a whole day spike if I used it morning and night.

I continued using it until January this year but not as religiously as I had done (I sometimes missed the odd day or just did one session in the evening instead of two but still using it with about 90% accuracy).

I was hoping I would be a good responder as my tinnitus is reactive and I have a moderate/high level of hyperacusis but unfortunately the device has not given me any significant improvements.

Most days I feel that the volume is actually louder than it was before I started using it. I'm disappointed but I thought it was worth the try to get a better quality of life. I'm hoping I can habituate at some point in the future as it feels there is nothing left to try now. I've had tinnitus for 19 months and it was noise induced. I can still hear it everywhere apart from the shower, this hasn't changed at all. My THI was in the late 50s/early 60s when I started using it and remains the same.

 

[Mentos]

My 10 week update.

For the last 1-2 weeks the spikes after using Lenire are gone and it seems my tinnitus level has slightly gone down (could be placebo though) and I feel less stressed by it.

I would say my tinnitus before the treatment was on level 3. During the first six weeks of treatment it was fluctuating between level 1-4, and now it has stabilized on level 2. My MML at first appointment was 8dB and THI 42. At 6 week follow up my MML was 14dB and THI 36 (I had a spike at the time though).

I'm curious to see my MML at my 12 week appointment which is on February 28th.

Since I observe no adverse effects from Lenire I plan to use it for 12 months in total to increase my chances of permanent improvement.

 

[AfroSnowman]

I want to put out a mini update/elaboration of my experience at 3.5 weeks. I'm only adding this now as there is a relevant bit or two that I forgot to add to my 3 week update report.

My left ear has always driven the worst of my tinnitus. Especially when cricketing, electric shock, and other moving sound become more prominent, it is driven by the left ear and then takes over my head. Now that is 95% no longer the case. The sounds are much more exclusively in my head and rarely in my ears, where before predominantly it was in both. I spend a lot less time with strongly moving sounds, which I find to be the more distracting and disturbing type of sound.

Again it seems more and more that I have at least portions of days that are exceptionally quiet than I did before. Maybe 3 or more times a week I have a period of the day where a shower or very loud environment can functionally mask my sounds where before that was a once a month event.

I also have fewer times when the tinnitus is just crazy overwhelmingly loud. The loudness type where it just overwhelms everything else around it.

That being said I still have loud jags, I still occasionally get strongly moving sounds. When it gets bad I quickly forget that I am experiencing more mild moments more frequently. I still haven't had any silence yet.

I am 90% sure it is having a positive impact, but it needs to do a bit more please.