Lenire — User Experiences and Reviews

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

    1. KotaDomowa

      KotaDomowa Member

      Tinnitus Since:
      Februar 2018
      Cause of Tinnitus:
      Lenire did not give me a lasting effect. Around... April? - I think it stopped working.

      Maybe I'll describe in more detail later. Anyway, I've been waiting for more methods with the same stubbornness for 2 years and 5 months that this is not a life sentence.

      (You can take into account the fact that I may not remember what it was like before Lenire. I put it out of my head.)
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    2. PauloZ

      PauloZ Member Benefactor

      Tinnitus Since:
      06/2015, got much worse in 09/2019
      Cause of Tinnitus:
      Loud noise exposure, both times.

      I just picked up my Lenire set this week in Hannover.

      Yesterday I did my first session.

      My main tinnitus are these loud high pitch tones around 15000 Hz, only maskable under the shower. So I can easily hear my tinnitus above the therapy. It also spikes my tinnitus quite a bit, but it 'calms' down after the session to its 'normal' state.

      I will post an update when I go back to Hannover in October.
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    3. AfroSnowman

      AfroSnowman Member Podcast Patron Benefactor

      Tinnitus Since:
      April 16 2019
      Cause of Tinnitus:
      So I just restarted treatment after a 3 month break. I had found a modest improvement during my first 12 week treatment but wanted to explore other options to see if I could move the needle a bit more. I tried tricyclic antidepressant (yuck), chiropractor, and started sound therapy. While I tried the other treatments described above I didn't want to confuse the issue by doing Lenire simultaneously. None of the other treatments did anything positive for me, though the sound therapy (Widex Zen) eases the pain in certain situations.

      One thing that did happen is about 6 weeks after I stopped Lenire I started to have more bad days. By about 2 months after stopping I had reverted to my pre-treatment baseline. This was interesting to me, because the change in my tinnitus had been subtle and I had started the treatment at about the 9 month mark in the tinnitus journey. I had wondered how much of the improvement had been a slight natural improvement that would have taken place from the 9-12 month mark regardless of my Lenire use.

      Because of this regression after my stopping I have significantly more confidence that Lenire had indeed soothed my situation just a bit. I also find it interesting that the other attempted treatments over the 3 month period had yielded no positive outcome. I would have expected to be as sensitive to a placebo effect from one high priced tinnitus treatment (Lenire) as another (Widex Zen), but this was not the case.

      Just a reminder of my case. I had a unique and ultimately unknowable circumstance for onset, but it started one night between when I went to sleep at 11pm and woke at 2am. DM if you want details, but circumstances aside damage occurred. I had a notch down to 55 dB, otherwise a ski slope that according to my audiologist looks like normal age related hearing loss (I'm 50) with mild loss above 4 kHz going down to about 30-35 dB at 8 kHz. My notch disappeared 6 months after onset (really weird right?). The tinnitus is severe 24/7 hear it over everything fuzzy, high pitched at13-14 kHz, sometimes crickets, and electric shocks, but since my first Lenire treatment it is mostly just fuzz. I deal with it reasonably well all things considered but it certainly beats me down and impacts my concentration and patience, especially later in the day. When it goes below a certain threshold I am able to deal with it quite well, when it is above that threshold not so much.

      I will check in periodically to report if I experience the moderate improvement again. Fingers crossed.
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    4. jmasterj
      No Mood

      jmasterj Member Benefactor

      Tinnitus Since:
      Cause of Tinnitus:
      Well it looks like I am taking a break from Lenire for a while. My tongue tip has died. I now wish I would have gotten a second one when I picked up the device, but I was going to purchase a spare on my first follow-up visit which is now indefinitely delay due to COVID-19. I am in the United States. Maybe it will be good to take a break. I will have to reach out and see if I have any options. I guess I am not too heartbroken since it really hasn't helped me at all though I have been stuck on the first setting. I'd guess I got around 200 hours out of the tongue tip.
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    5. AfroSnowman

      AfroSnowman Member Podcast Patron Benefactor

      Tinnitus Since:
      April 16 2019
      Cause of Tinnitus:
      Well week one down on my second attempt at Lenire. Again I feel much better equipped to judge its effects the second time around as after about 6 weeks through my 3 month hiatus where I tried various other treatments and I reverted to more what I had recalled my baseline being prior to starting Lenire; more challenging days and no real good days. I feel much more strongly that I can judge its impacts on me without placebo, expectations, fears, or ambiguity about natural habituation process skewing my perspective. Obviously I'm human and subjective so take it with a grain of salt.

      So to keep it quick and dirty, first three days back on the treatment were bad days, that is at the far end of what I experience, after that it has settled down and second half of the week is really as good as I have had in a long time. I noted it didn't come close to touching my benchmarks for a very good day (<5% of days) that I can't hear it in the shower or while driving in a noisy car with the radio on, but the days undoubtedly felt better. I can only postulate that it either 1) impacted the loudness but too slightly to cross those thresholds, 2) affected the quality of the sound in some slight way that made it less punishing, 3) it is zapping the flight or flight part of the brain and I am just reacting to it better.

      All that conjecture got thrown out the window as I had a crazily quiet period yesterday. Maybe the quietest 3 hours I've had since April 2019.

      See you next week...
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    6. AfroSnowman

      AfroSnowman Member Podcast Patron Benefactor

      Tinnitus Since:
      April 16 2019
      Cause of Tinnitus:
      Week 2 observations. Pretty much back to where I was at the end of my first treatment cycle. I guess I have the rare quieter moments that I didn't have prior to restarting the treatment, but the real difference is that I am just not having as many challenging days.

      From the end of my first round of treatment to about 6 week post treatment I felt 70% habituated. Sound there all the time 24/7 hear it over everything, minus the rare quieter random hour or two where maybe a shower or noisy environment could drown it out, but it was less troublesome. I was more likely to let it fade into the background of my consciousness. I would still have the occasional challenging day, but it was relatively rare.

      By the end of my 3 month hiatus I had regressed tp where about 30% of my days from wake to sleep were challenging/punishing and the remaining would become challenging enough by evening time that I would struggle. The most easily identifiable behavioral trait is that I was unable to watch TV with my family. It was too painful to focus on hearing.

      Not that watching TV is a great thing but this week I have been able to hang out and watch the idiot tube with the family and it didn't occur to me that I had to leave. I had no challenging full days, and had a single challenging evening.

      So again this brings me to the question of what is the specific nature of Lenire's impact my symptoms. I still don't know. I hear it above everything, but that might be as much a pitch issue as anything else as there isn't a lot of sound in my environment that is up at the 13 kHz to 14 kHz range. I do have the occasional quieter bits, maybe I'm experiencing them on a scale of 3+ hours a week where if I am in a non-silent environment and if I don't search for the sound I can pretend it isn't there. The rest of the time it is plenty loud still.

      This leads me to the same supposition that I posted last time that there are three possibilities.

      1) It does lower the sound enough that it crosses a critical physiological threshold where I am able to function. But if it drops from 44 dB to 38 dB it would still be omnipresent, loud, and difficult to discern the change without proper measurement.
      Though this could explain why I am having less challenging days.

      2) The quality of the sound may very well be different. I don't take daily detailed notes, because who needs to obsess about this stuff more than we already do, but I am sure that I have a much steadier hissy sound in general and not as much electric shock, cricketing, and other mobile sounds that I have always found particularly painful.

      3) This device is a habituation device and that it numbs my physiological response to the sound.

      At this point I am quite certain that it does something, not enough, but enough that I intend to continue using this for the long term, which leads to a request. I am in the US and will not be able to order another tongue tip when this one dies. If there is anyone on Europe who would be willing to help me by receiving a shipped tongue tip from Neuromod and then reship it to me could you please private message me. Thanks.
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    7. AfroSnowman

      AfroSnowman Member Podcast Patron Benefactor

      Tinnitus Since:
      April 16 2019
      Cause of Tinnitus:
      Doing my faithful weekly check in for my second time around this merry-go-round.

      Week 3 is in the books. My first half of the week was pretty rough, meaning a normal top of my range hard tinnitus day prior to doing Lenire. My immediate first thought/hope is that it is the predicted worsening that precedes improvement, alternatively it could be I was just having a few bad days.

      Anyways I'm back to my Lenire normal which is quite concretely a better normal, one that is far less destructive to my day to day life. I still hear the tinnitus 24/7 over everything 99% of the time, but more bearable.

      I plan to continue out to about 6 weeks then go onto a maintenance type program.

      Again I put the shout out to the universe of Tinnitus Talk users. I'm looking for a European based angel to receive and then forward me a replacement tip from Neuromod as they can't ship directly to the US. I only have a couple months left on this tongue tip.

      Please DM me if you are interested in helping.

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    8. Sironketchup

      Sironketchup Member

      Tinnitus Since:
      Cause of Tinnitus:
      SSHL / Stress
      Hi, I think it is time to write my 6 months update.

      Just a quick info about my history:
      I'm now 29 years old.
      I got severe tinnitus in November 2018 possible due to cold/virus/stress induced sudden hearing loss.
      But nobody can really tell me the exact reason.
      I have no hearing loss from 0-8 kHz.
      My tinnitus sounds like an aggressive buzzing electric wave in my whole head. I think my tinnitus is about 12-13 kHz.
      The tinnitus gets louder and changes in pitch when I clench my jaw. I often hear that while eating chewy stuff like baguette or gummy bears.
      It's also reactive to noise.
      Right after getting tinnitus I fell into deep depression (major depression diagnosed). I could not sleep, stayed awake for 3 days in a row. Cried all day. Lost my job (I'm a pharmacist), still living on benefits.

      I started the Lenire treatment at the beginning of February, luckily just before COVID-19 hit.

      In the first months of using the device there was almost no positive progress, the treatment spiked my tinnitus for some time after each session. Sleep improved a bit, I was still using Mirtazapine.

      After about 2 months my head started to feel a bit lighter, clearer, and i started to taper off the Mirtazapine.

      The tinnitus started to feel less intrusive, but still severe.

      The progress was very very slow, so slow that it's sometimes hard to tell if it is placebo or not.

      After 6 months I felt like I had plateaued, during daytime I often was less aware of the tinnitus, it was just easier to tune it out, it was less piercing.

      I had to stop for about 3 weeks waiting for the new tongue tip.

      The next time was very interesting. My tinnitus started to be much more fluctuating, sometimes it was almost gone when I was in bed.

      Anyway, after 2 weeks I felt like it's getting worse again so I was happy to go on the the treatment.

      Now this time the effect was instant. After my first session my mood got better and the tinnitus became somehow lighter.

      I'm now 10 days into my second 6 months of treatment and it's still fluctuating, but better.

      - this treatment takes time, improvement can be very slow.
      - this treatment WORKS, at least for some, but it's most probably not a cure
      - this is NOT a scam

      If you have the money and are not afraid of a worsening, I highly recommend going for Lenire.

      It will hopefully keep me going until Frequency Therapeutics' FX-322 and the University of Michigan (Susan Shore) device come out.

      Note: I'm still on PS1 and will keep the program change as a joker for later.

      Lenire gives me hope.
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    9. Lurius

      Lurius Member

      Oslo, Norway
      Tinnitus Since:
      September 2018
      Cause of Tinnitus:
      Valsalva maneuver
      Hello my friends. I want to keep this brief.

      I've now been using Lenire for 6 months. 4 months on the first setting and 2 months on the 2nd setting.

      After switching to the 2nd setting, I had some quiet days at first. Then it went back to baseline and there was a little improvement for a while. During almost the full month of August I had very little improvement at all. But I kept using the machine, because I'm a soldier and I feel like I need to use it for the full duration before I can really say if it has worked or not.

      Today, the 31st of August, is the 2 year "anniversary" for my tinnitus. And for some reason, my tinnitus is almost completely gone today. I don't know if it's a coincidence, placebo or just lucky, but it's never been this quiet in a really long time. Can't remember last time it was like this. So this gives me hope that it could actually go away completely if I keep using the machine for another 2 months. I know I may be setting myself up for failure by hoping, but I think I need something to look forward to because my life is pretty horrible as it is.

      I'll make another review in 2 months time and will tell you the final result of my experience with Lenire. Let's hope I'm free of tinnitus by then.
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    10. AfroSnowman

      AfroSnowman Member Podcast Patron Benefactor

      Tinnitus Since:
      April 16 2019
      Cause of Tinnitus:
      I'm approaching the 6 week mark on my second treatment cycle of Lenire. In terms of events of note I had a period of 3 days a couple weeks ago that were so good that for the first time I started to imagine it was possible to get better. Sadly that remarkable streak hasn't repeated. Other than that all is the same as with my previous reports. That is the tinnitus I experience is lowered slightly but significantly under this treatment. I am trying to get a replacement tongue tip for when this one dies out, a bit more tricky than it should be as they don't ship directly to the US, and intend on using this in some form for the long term.

      My overall person experience with Lenire is that my quality of life is better.

      Objective(-ish) measurements:
      I still have tinnitus 24/7 which due to its high frequency is relatively difficult to mask, but it is both objectively (for a sound that only I can hear ;)) quieter and less 'mobile'. Prior and between treatments (I took a 3 month break) it was an incredibly rare circumstance that I wouldn't be able to hear it in the shower, now it is a 50-50 event. Prior to treatment it was never maskable in a noisy car, now maybe 10% of the time it gets drowned out. In terms of 'mobile' sounds, I mean crackles, electric shocks, cricketing and the like, these were always the worst for me both because they are more difficult to not actively notice and that they push into ever higher more painful frequencies. Prior and between treatments almost every day, especially later in the day I would have 'mobile' sounds, now it is maybe one day in five that I experience some form of this.

      Subjective measurements:
      So the other marker I am using in considering the efficacy of Lenire is whether I am behaving less like an injured animal. There are probably a lot of things that I can cite, but I'll focus on three. 1) I complain about the tinnitus far less. I've confirmed this with my wife. 2) I can watch TV with my family. Before and between treatments watching TV, trying to focus on the dialogue, was just too painful. It just sucked. There is a very clear behavioral marker that I now watch TV with the family without really much thought. 3) I feel/think about/notice the tinnitus much less. Before I started the treatment in January I noticed/thought about the tinnitus >95% of the time. Towards the end of the first round of treatment maybe that dropped to 30% of time. I don't have a stop watch on it but I imagine that now I am actively aware of it around <20% of the time. Which means at least 80% of the time I feel somewhat habituated.

      I still have the occasional bad day or portion of a day, but I haven't had a multi-day/week tough ride since week 2 of the the second round of the treatment.

      Last thoughts and plans going forward:
      I was uncertain as to the efficacy of Lenire during my first round of treatment because I wasn't sure how much of what I was experiencing was a natural habituation/healing that may have taken place regardless. When I did my 3 month washout after about 6 weeks I regressed to my pre-treatment state. Upon restarting treatment I returned to my improved state within the first 2 weeks and appear to be remaining there. Due to this I am quite certain that my improvements are not placebo effect.

      Based on my limited experience it does not appear that the improvement is permanent. I believe this is consistent with what Susan Shore reported with her treatment.

      Going forward I am interested in figuring out what a sustaining protocol might look like. Are washouts advisable? I believe that Neuromod knows very little about what variations in use would do. I won't do it (I'm afraid) but what if you did 1.5 or 2 hours a day? Is 30 minutes enough? Does turning up the intensity make difference? After getting a benefit can I use it every other day? I never got a reprogramming - PS1 only, does it make a difference? I would love to hear from other long time users to learn if any self designed protocols helped or hurt.

      If you are considering using Lenire I would recommend reading user experiences, @PeterPan's data analysis, and understand that if it works for you it is likely not a cure but something that may soothe your symptoms somewhat. For me it is making a real difference in my life. The improvement is not enough but it is making a real meaningful difference in my quality of life. It gives me hope that there is real promise behind bimodal neuromodulation treatment for at least some of us and that there will be further improvements in treatment into the future.

      Peace out.
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    11. hans799

      hans799 Member Benefactor Hall of Fame

      Tinnitus Since:
      Born with it
      Cause of Tinnitus:
      Worsened Dec 2016 by headphones
      I've been absent from Tinnitus Talk for a while. I came back to post about pulsatile tinnitus but I thought I'd give a brief update on Lenire.

      I've been off it for months now as it has been giving me spikes. Roughly 2 weeks after stopping Lenire my tinnitus got noticeably better, then it continued to fade and got back to its pre-Lenire baseline in 1-2 more months.

      So although Lenire ultimately didn't work for me and actually made my tinnitus worse, I did get my old baseline back even though I've used the device for more than half a year. So at least its effects really were temporary. Hope they can find a way to tune/improve it.
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    12. RODRIGO

      RODRIGO Member

      Valencia (Spain)
      Tinnitus Since:
      I want to tell about my experience with Lenire:

      I started my treatment in December 2019. One hour in the afternoons, for six weeks. It really helped me a lot, the tinnitus was a lot less intrusive, smoother. Gradually I began to live longer without thinking about it. It was there, but softer, less intrusive. I really felt a lot better.

      After six weeks I went to Dublin, and they changed my programming. A mistake. Within a week I began to feel much worse, and returned to my initial tinnitus state. Many bad days, and all the progress was gone. The discouragement was total.

      I talked to Neuromod and sent them the device. They reprogrammed me again as in the first phase of treatment. However, I did not use it for a few months, I thought that perhaps it was better to let the brain rest and have it reset completely before starting the treatment again.

      And in July I started again, after two very ugly and annoying weeks of tinnitus. And it started to work. Again I have fewer bad days, less and less, and in turn I am in more situations without being aware of tinnitus. Yes, it is always there, but my brain is not so aware of it. It is not really a cure, but an improvement that translates into a better quality of life. Now I do the treatment before going to bed, since once it is done, the tinnitus spikes for quite a while. In this way, I fall asleep and do not feel the temporary spike.

      Conclusion: So far, I am grateful to Lenire. I use it daily, and I will do so for a long time. Perhaps the longer I use it, the more my tinnitus improves. Also, Neuromod's doctors will most likely improve their protocols once they draw conclusions from their statistics.

      In my case I have a slight acoustic trauma of -30 dB at 4000 Hz in one ear. The rest of the hearing is within normal limits. I do not suffer from hyperacusis. But the masking level of the tinnitus was 44 dB.

      I hope it will help you.

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