Lenire — User Experiences and Reviews

Discussion in 'Treatments' started by Tinnitus Talk, Jul 20, 2019.

    1. Juan Carlos
      Whistles

      Juan Carlos Member Benefactor

      Location:
      Spain
      Tinnitus Since:
      02/2014
      I used Lenire for 3 months last year, 30 + 30 minutes per day as they said.

      It did nothing at all.

      In the summer I stopped using it because of lack of time and motivation.

      They changed the device's program and returned it back to me. After the summer I started using it again, most days only 30 minutes because lack of motivation. Some weeks ago I noted an increase in my tinnitus volume, the same week I was using it.

      I cannot say 100% that Lenire is the reason for the increase but there is a high chance.

      So I'm not risking it anymore. I will never use this device again.

      Anyone knows if I can get part of the money back if I return the device back to them?

      During the appointments, they were asking me quite abstract questions like how I feel, annoyance, stress and so on (as they know Lenire relaxes you while using it), while the only thing I cared about was the real loudness level of my tinnitus.

      I cannot recommend anyone to buy Lenire.

      The only thing that helped my tinnitus, and I make clear this was only while taking it - was Trobalt (Retigabine).
       
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    2. EDDTEKK

      EDDTEKK Member

      Location:
      Germany
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Acoustic Trauma
      2nd round with switching the settings. 10 weeks in already. Change in tinnitus: zero!

      No benefit at all.
       
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    3. ChrisBoyMonkey

      ChrisBoyMonkey Member

      Location:
      US
      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Noise
      Hello everyone, just came back to update.

      I really did improve, no more pain, and tinnitus much quieter. Pretty much gone aside from when I go to bed or am somewhere super quiet. I used to hear it everywhere I go, on an airplane, by a highway, near a busy intersection, under airplanes descending by the airport, you name it. But now, a TV at regular volume is enough to quiet it out. I actually think Lenire had something to do with this, even if just a little, it kind of pushed it to a place where it could change and the rest was up to me. I did a rough massage similar to the Reddit tapping on the back of the head but harder, and that for me sort of reset the tinnitus. It sounds crazy but over time it worked for me, and by that I mean multiple "resettings".

      In short, the bimodal neuromodulation is real and actually works despite Lenire being kind of a weak, preliminary version of it. I also think it helped make it more susceptible to change and thus reversed the negative effects of OTO-313. The resettings also helped the bad feeling of it wear off for me over time. It used to feel like I had some sticky thick syrup all along the inner part of my ears and back of my head, and it hurt too, but over time with the "resettings" I could feel my body kind of suck it out of there, often in the morning right after waking up. It sounds crazy but with that sticky stuff leaving my head the tinnitus also got much quieter respectively. Controlled loud sounds such as going to the movie theaters with earplugs partially covering the ears letting enough sound in to make it feel challenged helped a lot too. You can do this at home too with a good sound system at loud but not too loud volumes without the earplugs. This really helped over time with me being able to expose my ears to more every time, the ringing really did reduce with this.

      Exercising also helped, along with listening to music with sounds that inhibited my ringing such as K-pop (high frequency sounds) accompanied with exercise.

      Have hope, and once the Dr. Shore device comes out, try combining it with exercise, daily music that inhibits your ringing, and sound volumes that challenge your ears without overwhelming them. Don't be afraid of headphones, just be very careful with them.

      I'm sure it'll be much faster for you guys with the Dr. Shore device, which I probaly will also try to get as I would like to be 100% tinnitus free like before.

      Also pray. God is real, and He helps, but He has also granted us all free will, and so we must also put in the work. Science can help too, use everything you can to beat tinnitus out of your life, you don't have to settle for just habituation, you can strive for actual noise reduction and possibly even elimination.

      Tl;dr: Lenire helped my tinnitus become variable, then the rest was up to me, challenging the tinnitus with controlled loud sounds and exercise and over time it got so quiet that it is now pretty much gone.

      Good luck people!
       
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    4. JohnDB

      JohnDB Member

      Tinnitus Since:
      2015
      Cause of Tinnitus:
      Loud Noise
      I don't have much time to give a long review, but I'll just add a few thoughts on my experience with Lenire.

      I've had tinnitus for over 6 years now after a acoustic trauma event around late 2015. I would call it a mild tinnitus with multiple sounds (mostly like hissing and ringing sounds) in both ears, but nonetheless annoying and frustrating most days, especially at night when trying to sleep.

      I bought and used the Lenire device for about 15 months starting from around late 2020. I followed the guidelines more or less exactly. I did miss a day very occasionally or only did 30 minutes some days, when I was too busy on some days. So not perfect, but I do not think that mattered anyway. I did the required 60 minutes most days.

      Like many others have said, I saw very little to no improvement. Any of this tiny improvement could be just be explained by placebo or simply the effect of de-stressing/relaxing for 60 minutes everyday with the device. Fortunately, I don't think my tinnitus got any worse from using it, at least not significantly or discernibly.

      In hindsight, I feel I was a bit duped and foolish for buying it. Like others, I bought it because I felt desperate at the time. perhaps I should have researched the device more. And looked for more independent controlled trials. And more evidence that the improvements reported by some were clinically significant and long lasting.

      I don't think it is worth the money. So I would not recommend it to others.

      I like what I've seen and read about the approach by Dr. Susan Shore, so will watch that space, but I'm more cautious now so won't rush into anything.
       
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    5. Lon_p

      Lon_p Member

      Tinnitus Since:
      01/2023
      Cause of Tinnitus:
      Unknown
      Well here I am. Maybe not the best time to post my experience as today my tinnitus is ramped up after having a relatively good day. Like another review I read said, I may have jumped the gun and moved too fast to try Lenire but that’s just my personality. I can be a bit too emotional and anxious.

      Anyhow, I have had short mild episodes of low level tinnitus that have come and gone over the years up to January 2023. Then almost out of the blue I was hit with the real deal! I think it may have come from firing a handgun but I was wearing hearing protection. Anyhow, it was traumatic for me. I have had days where I’ve thought I can’t take this.

      I ended up finding a clinic nearby that specialized in tinnitus. I purchased some expensive hearing aids that play a low level of sound therapy. I did that for a couple of weeks but had been looking into Lenire. I read a few reviews mostly on the “Lenire website” and decided I’d try to find a clinic near me and investigate. I went on the Lenire website and found a handful of clinics that were going to offer it. Most of them I spoke to or had communication with never got back to me other than a clinic I found in Minnesota, I live in North Texas so that is quite a trek away. They invited me to a seminar that they were going to have and, after speaking directly to the audiologist, he told me to come on up and he could fit me for the device and I could go to the seminar.

      Being anxious for relief, I made an emotional decision and flew to Minnesota. Got fitted, bought the device for $4000, went to the seminar and then flew home with the treatment.

      They had said that my tinnitus could increase at first but would plateau and then decrease. Well, it increased all right. It really went up so much that it was startling. I contacted the office and said things had gotten much worse and he advised me to back off to ten minutes here and ten minutes there compared to the suggested 1 hour a day protocol. I tried that for awhile but things just seemed to get worse.

      Finally, after speaking with the audiologist again, he recommended I get into therapy for my anxiety and postpone using Lenire. I followed his instructions along with deciding to go back to my hearing aids with sound therapy.

      So as of right now, roughly three weeks from last Lenire treatment, my tinnitus has not really gone back to where I was other than occasionally which has been encouraging.

      One other thing to note is that it did affect the tone. Before Lenire it was unchanging but now it pitches up and down. From what I’ve been told by the audiologist, this is an encouraging sign.

      Anyway, for now I’m staying with the hearing aids and the sound therapy along with the cognitive behavioral therapy as I’m very reluctant to go back to Lenire. I also had a conversation with the audiologist yesterday and he stated that we both may have rushed into this too quickly...

      So that’s my experience for what it’s worth. I may have stopped it too soon for it to help, not sure, but at the risk of it continuing to get worse I’ve opted to suspend the treatment for now, at least till my tinnitus significantly calms down which I’m hoping and praying for.

      God Bless.
       
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    6. RocketJSquirrel

      RocketJSquirrel Member Benefactor

      Location:
      California, USA
      Tinnitus Since:
      08/1997
      Cause of Tinnitus:
      Rock concert
      It's quiet in this thread. Are there so few Lenire users on Tinnitus Talk? I've been away from the forum for a while but came back to see if anyone had positive results from Lenire.

      I started Lenire on June 25, 2023, so not quite a month yet. I believe it is having a positive effect. My tinnitus is usually louder immediately after a 30 minute session, but that's temporary. I feel like the overall volume of my tinnitus is slightly reduced.

      Last Thursday I went to bed and realized I was hearing silence for the first time in decades. It was very strange not to hear my usual constant ringing. That, too, was temporary and the tinnitus is back. But I'm hoping that's an indication that further improvement will occur.
       
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    7. Nick47

      Nick47 Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      2015
      Cause of Tinnitus:
      Viral/noise
      If you have used Lenire, in addition to posting your experience here on Tinnitus Talk, it would be good if you posted it also as a Google review via the below link.

      Click here to post a Google review
       
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    8. RocketJSquirrel

      RocketJSquirrel Member Benefactor

      Location:
      California, USA
      Tinnitus Since:
      08/1997
      Cause of Tinnitus:
      Rock concert
      There's new firmware available for the Lenire device.

      My device is dated 2023-04-13, so not terribly old. But it has always had this annoying glitch where, twice during every session, a "scratchy" noise lasting about one second would occur. It was annoying but not really terrible. But I found myself distracted thinking about why and when it would occur. My audiologist suggested Bluetooth interference, which seemed plausible. I have a house full of Bluetooth and WiFi devices and maybe one of them was periodically interfering with the headphones.

      Nope, it wasn't interference, it was a bug. There's a new firmware release which fixes it. I visited my audiologist on 5 August 2023 and got my firmware updated. The given reason for the firmware was to fix a different glitch, where Lenire would stop playing and require a press of the Play button to resume. But for me, it fixed the twice-a-session noise issue.

      So if your unit has either the noise glitch or the stops-playing glitch, ask your audiologist for a firmware update.
       
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    9. RocketJSquirrel

      RocketJSquirrel Member Benefactor

      Location:
      California, USA
      Tinnitus Since:
      08/1997
      Cause of Tinnitus:
      Rock concert
      12 week update from the USA:

      I've now been using Lenire for 3 months and notice no difference in my tinnitus, either positive or negative. It might be 1-2 dB quieter, but that could be my imagination. The high-pitched ringing is still there 24/7 even if it's maybe a tish quieter.

      Every once in a while I perceive I am hearing silence. It is subtle and sometimes I think I might have been hearing silence for several minutes; it takes a while to notice. Again, this could be my imagination.

      My audiologist, with whom I met today, suggests that people like me with very long-term tinnitus (25 years for me) take longer on the device to get relief. Length of tinnitus suffering is not among the test subject data available; Neuromod apparently did not isolate that as a parameter.

      I am disappointed, of course, but since I have no negative response to the device, I will keep using it and hope that my audiologist is correct that long-term tinnitus requires long-term treatment.
       
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    10. Gary Heaney
      Doubtful

      Gary Heaney Member Benefactor

      Location:
      Glasgow,Scotland
      Tinnitus Since:
      1/09
      Cause of Tinnitus:
      Bang on the head? Stress?
      Lenire made my tinnitus worse.

      It’s steadily ramped up over 15 years to severe. Nothing masks it now and I’m at my wits’ end.

      Lenire was my latest hope. I returned the expensive headphones and device and received a full refund. I had to use Consumer Rights Act to have them finally agree.
       
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    11. CFC1954

      CFC1954 Member

      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Unknown
      Recently I completed my treatment with Lenire using their device as prescribed. I will do my best to remain factual and refrain from subjective commentary. Here are the facts from my experience.

      1. I was drawn to Lenire largely because of its FDA approval here in the US. I also read their posted literature regarding the clinical trials and believed there was 'a good chance' that I would see results. Further, I did not read of any documented 'negative results' so I went forward from a standpoint of 'nothing to lose' (other than my $3500).

      2. After the orientation on how to use the device I took it home and began using Lenire immediately.

      3. At about the one week point the ringing in my ear substantially worsened. I admit to feeling in a state of panic. I called the audiologist who told me that some worsening was common and that in fact most users report some level of increased ringing. The message was 'it often gets worse before it gets better.' While this helped me calm down, I remember wishing that this was something I was told during the orientation. It would have better prepared me and therefore spared me of the panic.

      4. Sometime between weeks 2 & 3, my condition improved - that is, my tinnitus level returned to baseline. That brought a feeling of relief. From there it was 'up and down' for about two to three weeks. Most of that time things were 'good' - which for me was baseline or better than baseline.

      5. Around week 7 my tinnitus level again 'spiked.' I would estimate the volume of my ringing increased by a factor of 2X. This never changed.

      6. Today I am on the other side of my Lenire program and the key takeaway is that not only did Lenire not bring any improvement to my 'tinnitus volume', but, my ringing actually worsened. The volume level is easily 2X what it was before I started with Lenire. Perhaps it is accurate to say that - for me - the Lenire experience backfired.

      7. For me, I have always been able to handle status quo with my tinnitus. While there certainly have been bad days and scary moments over the years, status quo was okay with me. My biggest fear with tinnitus has been the fear of 'what if it gets worse'? I admit, that thought always scared me. It is difficult to be where I am today - that is, with a worsened state of tinnitus, and moreover to be in this state after undertaking a treatment that had the potential to bring improvement.

      8. I have other comments I can make about the experience in dealing with the audiologist as well as thoughts on how well trained (or untrained) the audiologists are when it comes to answering questions along the way. By that I mean, other than showing me how to use the device, it appears at least my audiologist was lacking confidence in how to answer questions about the user experience leaving me to question how the handoff from Lenire to 'the field' is being orchestrated. But, I will save those comments for another day.
      I am working my way through this letdown and am determined to move forward. I won't let myself regret my decision to give Lenire a try. I needed help and I made an informed decision. I am happy for those that have been helped by the device and sincerely hope no one else ends up with a 'backfire' experience like I have had. I believe communities such as Tinnitus Talk can benefit from user experiences such as mine.
       
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    12. Tina P

      Tina P Member

      Location:
      US
      Tinnitus Since:
      02/2023
      Cause of Tinnitus:
      COVID-19
      Lenire made my tinnitus worse. It started a new noise that I still have 8 months after using the device which will likely never improve.

      This is my first post. I will try to keep it brief.

      I'm hopeful that @Lon_p sees my post because I'm highly certain we attended the same seminar at the Minnesota clinic in early May. I traveled from KC to attend the seminar and to purchase the Lenire device.

      I have had unilateral left ear tinnitus since 2014 but was able to habituate to it. For 9 years, I've been lucky that it did not affect my life. During the day it was not noticeable and at night, I could sleep through it. That all changed after having COVID-19 in February 2023. My tinnitus went from 0 to 100 overnight and I'm not embellishing.

      In February, I started searching for help which is how I learned about Lenire. I too was so hopeful for relief that I booked a ticket to Minneapolis, attended the seminar and purchased the device. I used the device only twice for a total of 15 minutes. My 2nd time using the device, I had a horrific experience. I had a surround sound in my head that lasted for 12 hours. I thought for sure this can't be permanent, but I was wrong. The sound the Lenire device created is in my right ear. It's a high-pitched uncomfortable squeal. I'm very disappointed because I had considered my right ear to be my good ear and I was very protective of it. I asked during the seminar whether the device will hurt my right ear. I was told that 'tinnitus may increase but it will go back to baseline'. With that, I did not expect for Lenire to create a new noise in my right ear. I've been anxiously waiting for it to go away, but the reality is it won't.

      I had spoken to the clinic after using the device the first time in their office because it made me dizzy. I was told that when I go home use it for only 10 minutes (not the recommended 1 hour), but after my 2nd use of 8 minutes it had already done lasting damage.

      I've had a hard time forgiving myself for trying it. The last thing I wanted was for my tinnitus to be worse. I was concerned about that but put faith in the research, the manufacture, the reviews, the FDA and the clinic that it was safe. But it's not. I have had people discount my experience stating the device couldn't have made your tinnitus worse. I know without a doubt my experience and the new noise I now hear every day and every night.

      Good luck to you all. We endure an unforeseen burden. I'm hopeful that we all can experience relief at some point and just maybe enjoy a day of silence.
       
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    13. Lurius
      Sad

      Lurius Member Benefactor Hall of Fame

      Location:
      Oslo, Norway
      Tinnitus Since:
      September 2018
      Cause of Tinnitus:
      Valsalva maneuver
      Alright, so I have decided to weigh in here for the last time. The reason is that I've grown mighty tired of reading people smear Lenire with a kind of totalitarian mindset.

      I don't know this 100% for sure, but I'm pretty confident that I'm the active user with the most experience with Lenire on this entire forum by now. I've used it more than most of you altogether, so I feel I can speak freely here.

      Lenire is an experimental device. It doesn't work for everyone. I'm also disgusted by how Neuromod sometimes operates their customer service and the switch to a new profile with a new name seemed like a cheap shot at best to me. I also don't like how they seem to always dodge responsibility when their product doesn't work like a magic button or something.

      However - there is a great deal you can do yourself which I feel a lot of you simply do not do. I had to really pry this information from them, but it should also be somewhat obvious that you have to fit the use to your own brain. The 1 hour they suggest is not going to work for all of us. I went through a nightmare to find the sweet spot for me. Duration and the sound level you hear in the headphones matters a lot and you need to adjust that accordingly. You will most likely get better results if you experiment with this, but it will also probably make your tinnitus worse at first. It took me a long, long time before I found the sweet spot for me, which is 20 minutes every other day. Everyone's brain is different and some people are more sensitive than others.

      Lenire didn't work for you? I'm sorry to hear that. But that doesn't mean it doesn't work for anyone. This narrative that Lenire is a 100% garbage product that never works for anyone is false. It's simply not true. Lenire has definitely made my tinnitus worse. It has also saved my life many times. On a more long-term perspective, I would say hands down that Lenire has made my life livable while I'm suffering from this dreadful condition.

      Please do not be so damn bombastic about things before you have the experience and data to back up your story. If you used Lenire for 1 month and it made you worse, you really don't know anything. Saying that it's a useless scam with that as your foundation is a red herring, to put it nicely. The truth is usually found in the middle and I'm all about a balanced perspective. This thread is anything but balanced and I felt that I had to correct that once and for all.
       
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    14. RocketJSquirrel

      RocketJSquirrel Member Benefactor

      Location:
      California, USA
      Tinnitus Since:
      08/1997
      Cause of Tinnitus:
      Rock concert
      During yesterday afternoon's Lenire session, I started hearing a new sound in my right ear only. In addition to my usual high-pitched ringing, I started to hear very brief high-pitched "ticks" or "dings". At first I thought Lenire was malfunctioning, but the sounds persisted after the end of my session.

      The dings are intermittent, coming at random intervals, making them pretty annoying. I was hoping they'd go away overnight, but I still hear them today.

      Is it possible Lenire changed my tinnitus after almost 5 months of daily use? I guess that's what it's supposed do, after all.

      I'm wondering whether this is a good sign or a bad sign. It might be a good sign, indicating that my tinnitus can change after 25 years of never changing. Or it might be a bad sign, adding to the sounds that I "hear" which might never go away.

      At this point, I'm unsure whether to continue with Lenire. If a change in my tinnitus is a positive sign, it would make sense to continue. But if it's an indication that Lenire is making my tinnitus worse, I should stop. I don't know what to do going forward.
       
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    15. RocketJSquirrel

      RocketJSquirrel Member Benefactor

      Location:
      California, USA
      Tinnitus Since:
      08/1997
      Cause of Tinnitus:
      Rock concert
      Here's a 5 month update, having started Lenire on June 25, 2023.

      In my previous post, I noted that Lenire had added a new sound to my tinnitus on November 15, 2023. It was a clicking sound and quite annoying. At its worst, it sounded like a Geiger counter next to a radioactive source. Lots of rapid-fire clicks. Much worse than my original constant high-pitched ringing. I had at least habituated to that.

      I quit using Lenire and the new sound has subsided a lot and no longer is rapid-fire; it's back to intermittent but doesn't seem to be going away completely 10 days later.

      So Lenire failed to alleviate my tinnitus and instead made it noticeably worse, apparently permanently.

      I am done with Lenire.
       
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    16. RocketJSquirrel

      RocketJSquirrel Member Benefactor

      Location:
      California, USA
      Tinnitus Since:
      08/1997
      Cause of Tinnitus:
      Rock concert
      I am happy to report that the clicking sound in my ear has subsided, so I must retract the above statement. I'm essentially back to where I was before 5 months of using Lenire; no permanent damage appears to have been done.
       
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    17. Michael Stabile

      Michael Stabile Member

      Tinnitus Since:
      2009
      Cause of Tinnitus:
      30 years being a flight attendent
      I bought Lenire for $3800, hoping that it would relieve my tinnitus. I followed my doctor's advice and used it twice a day for 30 minutes. After four months, I had to stop because it made my tinnitus twice as bad as when I started. Lenire never says in its information that your tinnitus can get worse and stay worse. They only say that it might get worse for a short time. They do not offer any refunds if the device does not work.

      I would say be very careful about spending all that money on a device that isn't guaranteed to be helpful.

      Lenire has ruined my life. Imagine suffering from tinnitus for years, then you try a treatment that is supposed to help, but now your tinnitus is worse than before the treatment.
       
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    18. Jammer

      Jammer Member Benefactor

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Acoustic trauma
      NPR covered two tinnitus sufferers who are using Lenire, and one of the doctors (the founder of Lenire) discussed how it works and the benefits it brings. This was reported today on the NPR website.

      It appears miraculous in reducing tinnitus loudness if used regularly, and both sufferers can now easily live with their tinnitus.

      Too bad they didn't query users on Tinnitus Talk about their experiences after purchasing and using Lenire; the NPR article most likely wouldn't have been published.

      Got tinnitus? A device that tickles the tongue helps this musician find relief

      [This was posted in the User Experiences because the article contains user experiences; comments about this belong to → the main thread here.]
       
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    19. TimMcGu

      TimMcGu Member

      Location:
      UK
      Tinnitus Since:
      08/2021
      Cause of Tinnitus:
      Unknown
      I'm about to end week six of my Lenire treatment.

      This week, I went three consecutive days without tinnitus.

      However, I woke up with a spike yesterday morning, and my tinnitus returned to its uncomfortable worst. This has been the pattern since I started the treatment: good days and bad days.

      It's still very early on, but I'd be interested to hear of anyone who has had this type of experience.
       
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