Lenire — User Experiences and Reviews

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

    1. pochito

      pochito Member

      Location:
      France
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Excess - Hearing loss - Gigs - travels - loud music - STRESS
      At Dublin airport going back home after my first meeting at Neuromod.

      I'll be back on the 17th of January to pick up the device. I can't pick it up earlier because I will be traveling around in December.

      Nothing more to say than everyone already knows. While I was waiting for my appointment, I briefly met another patient who had already been using Lenire for a few weeks. I asked him how it was going for him, he said he had had good tinnitus days since he started the treatment.

      The Neuromod team is really confident about their product and even though they told me it's not working for everybody they seem to have good results with others. The only thing I don't understand is why there's not more feedback from the users that have had good results because I feel that if Lenire worked for me I would be advertising it for free... but well maybe I am wrong.
       
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    2. AliceW

      AliceW Member

      Location:
      France
      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      Acoustic trauma - loud noise
      When I was at the Neuromod clinic for my first appointment, I talked to a patient. She had been using Lenire for 12 weeks.

      She told me that after the first 6 weeks, her tinnitus had decreased by about 10 dB. Then, they changed her settings for the next 6 weeks, and after that she felt that her tinnitus had increased back up.

      I think she was still seeing an overall improvement, and she is continuing the treatment with another stimulation settings for several weeks.

      She was confident because she saw a real difference during the first 6 weeks of her treatment.
       
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    3. ruud1boy

      ruud1boy Member Podcast Patron Benefactor

      Location:
      Huddersfield, UK
      Tinnitus Since:
      Mild since 2006. Severe since late 2016
      Cause of Tinnitus:
      An enthusiastic youth
      I'm coming to the end of my 12 weeks - I'm back in Dublin next Tuesday - and unfortunately, I haven't seen any real change in my tinnitus. I had one very good day a few weeks ago - my tinnitus PB - but other than that it's been good days / bad days, just like normal. I'm still sticking to the treatment protocol, as it'd be daft not to after splashing the cash. Trying to maintain the hope that improvements will accrue.
       
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    4. Allan1967

      Allan1967 Member Benefactor Hall of Fame

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Hello,

      Haven't posted in this section for a while... too busy watching my life fall apart elsewhere.

      I've stopped using Lenire and the supposed weekly contact I would have with Neuromod has drifted off.

      Nonetheless my experience with Lenire was that it instantly increased my tinnitus and as the weeks progressed my reactivity went through the roof as well.

      Within a week I was already on the phone to them with a WTF is happening here and was told this was very common in the trials - 1 in every 2 experienced increases. But I struggled with it (especially as it was so f&&king loud and invasive - it's hard to think 'yeah... carry on') and dropped to once a day and then not at all... all under Neuromod's advice.

      Then I had a fire alarm panel exposure of 5 to 10 seconds. But I think that, as well as the very heavy sound of the pre-installed default tune, just aggravated things so I suspended treatment altogether.

      Few weeks later I get an ear infection and am left with two new tones and seemingly worse tinnitus all-round.

      So... I'm back at the NHS now and am wearing a good old fashioned masker for 6 hours or more per day for fcuk knows how long.

      Will I go back? I don't know... I had my unit music changed to just the beeps... but this week I read that Jack has experienced a new noise himself on that setting.

      So I now have a Lenire sitting gathering dust and no fcking idea whether I'll use it again or even if I want to use it again.

      Personally I think bi-modal neuromodulation is a crock of shyte and Susan Shore's device will probably be on par.

      What we really need are safe drug cures. I mean... people report taking benzos and getting relief and I've experienced it myself... my most two recent good days have been preceded with either Trazadone or Zopiclone the night before... this tells me that those fuckin neurons don't like getting stoned with something, so drugs or regeneration are the way forward.

      I'm open to offers on my Lenire.
       
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    5. BigNick

      BigNick Member Podcast Patron

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Unknown
      12 week update.

      I had some improvement in the beginning, the main thing was that the random spikes I used to get stopped completely. The intensity of my tinnitus is slightly reduced but it's hard for me to quantify as I have many sounds that fluctuate.

      A very odd thing has also happened in that there are one or two sound therapies on YouTube that will now take my tinnitus down to a 2/3 out of ten and this is just listening through my phone speaker. Sometimes lower than that. They are the Art of Zen neuromodulation ones but sadly the effect doesn't last very long but it didn't reduce my tinnitus at all before I started using Lenire.

      However, overall as it stands I'm pretty disappointed as my tinnitus hasn't reduced nearly enough to make any difference to me, I'm still very, very down and it dominates my so called life. I still hear it over most things. My MML is pretty much unchanged.

      I've had my settings changed again and will bat on with the treatment. There are signs here and there that something more is happening but whenever my tinnitus seems to calm down it comes back again.

      I do think there's a lot of potential in this type of treatment as it tamed my spikes so hopefully the various people working on it will develop and refine it as they learn more.

      I'll update if I have any improvement.

      BN
       
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    6. ruud1boy

      ruud1boy Member Podcast Patron Benefactor

      Location:
      Huddersfield, UK
      Tinnitus Since:
      Mild since 2006. Severe since late 2016
      Cause of Tinnitus:
      An enthusiastic youth
      My 12 week report - no improvement as yet.

      My THI & MML scores were much the same at every stage throughout the process. They've now put me back onto the same program as I was on initially - so I started on PS1, then went on to PS4 and now I'm back on PS1 again. No, I don't know what that means and there's no discernible difference between them. When I questioned the benefit of going back to a previous setting, they said there were other possibilities but this is what they would recommend. We're in their hands.

      I asked what the general results were from paying customers - a pointless question I accept, as they're never going to say 'it's not working for anybody' even if that were true - and they said they are seeing 'most' people seeing an improvement.

      As I've noted before, I'm still going to stick with the treatment protocol. I haven't experienced any adverse affects, so the only real downside to this is the time it takes me each day, which I can live with. If anything, it gives me an hour a day off from listening to my tinnitus. I raised the point that there is going to come a time when I think 'if it's going to happen at all, it would have done by now' - the audiologist (a different one, not Caroline) was very keen to stress that this is a long term treatment, so I should stick with it for as long as I feel able to and to contact them before jacking it in.

      I asked about the future relationship between me & Neuromod and they said I am now their patient and I can go back as many times as I like, but any future visits would be chargeable. They said they would prefer customers / clients / patients (not really sure what we are to them) to keep in contact with them and to go back and see them for an updated occasionally. They said they would schedule a 12 month follow up appointment, which I assumed would be a phone consultation. Their admin girl, Grace, then took me by surprise a bit and said she would be book me in for a return visit in 6 months. I demurred on this and asked to just book in a phone call - there's no point me traipsing back over to Ireland to tell them not much has changed - but I live in hope that I might be in a better place in 6 months time.

      We discussed the fact that they'll presumably be accruing much more data now, from the larger pool of users. I asked if they would contact me / us proactively if analysis of this data led to further refinements of the treatment parameters - she didn't really answer this either way, but I guess I'll find out one way or another.
       
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    7. Allan1967

      Allan1967 Member Benefactor Hall of Fame

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      As if by magic I got a call from Neuromod the day after my post on Lenire here. They would like me to go back over ASAP.

      Truth beknown right now I have zero motivation to do so.
       
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    8. TinMan2019

      TinMan2019 Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Anxiety / Unknown
      12 week update from me.

      Not great news truth be told. I still have tinnitus.

      I did recently have my profile changed on my 6 week follow-up. It was a delayed appointment, pushed more to 10 weeks rather than 6, being I live in the US.

      Anyway, I do occasionally have good days, but I had them before I started treatment. I may have the occasional additional better day than before I started. Who knows. Today my tinnitus has been doing its high pitched whistling all day long and is as loud as it's ever been. Yesterday it wasn't so bad.

      I dunno.

      I'll give it another 3 months of doing an hour a day. But after that I'll probably wave the white flag and give up on the treatment.

      I feel I've spent a fortune on all the transatlantic trips, and the device itself.

      I was hoping for a permanent reduction on the tinnitus loudness level. However that has certainly not been the case.

      I did meet a nice chap in the waiting room. He was on his final 12 week appointment. He said his whistling has changed to a less annoying drone. So it does work for some. Both of us have apparently excellent hearing.

      I'll keep going until the tongue tip expires, then call it a day. As it stands, I'll probably not go to the final appointment, not unless I see an improvement in the next 12 weeks. If things miraculously improve in the next 3 months, then I'll buy another tongue tip and keep going.

      I'll update again in 3 months.

      Good luck to those starting treatment. Remember it does work for some. Not all. A risk we all knew going in, so we can't cry too loud.
       
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    9. Gee82

      Gee82 Member

      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      Noise
      Hi,

      I got tinnitus in my left ear following an acoustic trauma in December 2018 - No hearing loss.

      I have been using Lenire for 12 weeks and here’s my experience. During the first 3 weeks of treatment I noticed an improvement: my tinnitus was often low and at times even gone. For the first time since onset I was able to sleep with no masking and I slowly started to feel like my old self again.

      Unfortunately at week 4 things switched back and worsened for no apparent reasons.

      From then on it’s been mostly bad days, except for a few days here and there when I would feel decent again. I don’t think that these fluctuations had anything to do with the treatment as my tinnitus was fluctuating even before Lenire.

      I have been in touch with Neuromod throughout the 3 months, they advised on adjusting the treatment according to how my tinnitus behaved.

      One thing that I noticed and to be honest didn’t expect: since I started Lenire I noticed an additional tone in my left ear that definitely wasn’t there before the I started treatment.

      I wonder if any other users experienced anything similar?

      Overall I am not feeling any better since I started Lenire, so at 12 weeks I line up with the other unlucky users who had no consistent improvement. However I will give it another go for a few more weeks hoping that a longer term use may bring on some results.
       
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    10. Lucky97

      Lucky97 Member

      Location:
      Italy
      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Ear infection
      Update week 4.

      Today my tinnitus was completely gone for 12-13 hours. I've never heard this silence for such a long time. Really. Nothing. No bell in the head. No noise in the right ear. The last week the same occurred for two hours. I've got no idea if this is the Lenire effect or something else but this is really good for me. And this is only the first month of using Lenire.
       
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    11. hans799
      Mellow

      hans799 Member Benefactor

      Location:
      Hungary
      Tinnitus Since:
      Born with it
      Cause of Tinnitus:
      Worsened Dec 2016 by headphones
      Week 0 Update

      Got my device on Tuesday. It's now Thursday and I've used it a few times.

      Background: I'm a 31-year-old man. I've had tinnitus since birth; I didn't even realize until I was over 20 that not everyone has a head noise. I'm very well habituated to it, but it's still distressing sometimes, and (probably due to an overuse of headphones) I had new sounds appear in late 2016 causing a spiral of suicidal ideation which landed me in the psychiatrist's office. So I'm intimately familiar with the hell of tinnitus. (The sounds faded a bit and I recovered mentally, too.)

      Tinnitus characteristics: It's an orchestra. At least 4-5 different noises. A background hum like an enormous piece of machinery; tones at 1200 Hz, 1800 Hz; another pure tone at 6000 Hz; Morse code bleeping that comes and goes; all manners of clicks, chirps, beeps that come and go as they please.

      It's bilateral. It's not very loud, I'd rate it at 3/10, but not easy to mask, e.g. I can hear it speeding down in my car on a highway.

      As a bonus over the tinnitus, I also have misophonia, crappy balance, and need absolute silence (except the tinnitus, of course) to sleep, so life gave me a pretty banged-up auditory system.

      At least my audiogram is healthy.

      First impressions: I've used the device a few times. I might be imagining this, but... following treatments, the tinnitus is already a bit quieter. The treatment uses a lot of white noise as background which always makes my tinnitus reactive but not with Lenire. Because of work, I'm also sleeping little and on stimulants, which would normally spike the tinnitus, but not this time. There's definitely something going on here :) A good omen.

      I'll be posting my updates every three weeks, which is the same cadence Neuromod uses to follow its patients up.

      Wishing everyone a "good-T" day for tomorrow! :)
       
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    12. Ivkopivko
      Speechless

      Ivkopivko Member Podcast Patron

      Tinnitus Since:
      04/2019
      Cause of Tinnitus:
      don't know, probably motorsport + headphones for last years
      Just wanted to share a few sentences about my appointment experience at Neuromod. I was there last Friday, 8th of November between 12:15-14:00.

      Grace warmly welcomed me, completed a THI questionnaire and asked for a signature that I allow them to process my data via some Apple tablet and then I went directly to Caroline. We did the quick assessment that could be compared to the standard ENT assessment, but with some marginal differences - we did a hearing test up to 16 kHz and she has been super very professional, polite and caring about how my tinnitus started and tried to collect more information.

      What caused me a little stress was a 15 dB drop at 8 kHz in my right ear (last audiogram from June 2019 and April 2019 showed a 5 dB drop), so I asked her If we can repeat that one as this one surprised me a lot and the best we could measure was 10 dB loss :(. Nevertheless she said even with this one I have actually very good hearing and it might be caused by flying and is typical that our hearing threshold may wary day by day. The truth is maybe somewhere in between as I was stressed by this trip, starting with waking up to catch the plane in the middle of the night and much more on that day.

      I was forwarded to Ciara who explained how to use the device and what the treatment is about. She wasn't surprised that I knew all of this and I think many people actually knows maybe more about them, than they actually do (joke). I asked about worsenings, about demand and much more, but they're well trained what they can and can't say. There was a young lady watching what's going on and then confirmed they're training more staff to provide more appointment options even in Ireland.

      I must have appeared very distant, because I'm kind of resistant to someone selling me something, maybe because of my mentality or that I work half in sales and doing the same tricks to my customers, but at the end I explained that I might wait a little longer to get the treatment option closer to my location, to see more experiences from current users and who knows, maybe they find way to even improve the treatment. They're completely fine with that, don't try to pressure or ask for a commitment.

      It was a lovely visit, everything was transparent, but they should seek for some more representative premises, not these rented old worn out rooms, even though the Hermitage Medical Clinic looks very modern, stylish and clean.

      To be honest, I don't know what to do... I would love to try it and see what happens, but at the same time something tells me that they're not ready yet, or I should wait as returning 4 times to Ireland is quite an investment both time and money-wise.

      My girlfriend took a part in this trip, we extended the trip until Sunday evening and really enjoyed the Dublin with all its goods.
       
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    13. Josh1994

      Josh1994 Member

      Tinnitus Since:
      2018
      Cause of Tinnitus:
      unknown - started after a period of balance issues
      Hi,

      I'm quite dormant on Tinnitus Talk, I only really post if I am in real need of answers but I thought it was only fair to share my experience with using Lenire.

      This is my 12 week update.

      Some important background information

      I am 25 years old. I have had tinnitus for 17 months, which began after a period of balance issues. I have no hearing loss all the way up to the hearing threshold (a full hearing test beyond the standard test was done with Lenire at my first appointment), however I should mention that I have been going to nightclubs, music festivals and generally listening to music way too loud for 8+ years.

      My tinnitus is in both my head and my right ear. The head tinnitus is normally a high pitched tone or a high pitched hiss on a good day. The right ear tinnitus sounds like a toilet extraction fan. Overall my tinnitus is mild with some moderate days, however as it is such a high pitch it is difficult to mask. I also have daily fleeting tinnitus which can occur 2-3 times a day.

      Mentally I’ve been in a dark place since developing tinnitus, although I was starting to improve slowly. As a result of the above along with starting a new job after university, I was on the verge of commencing a course of antidepressants.

      Treatment Process

      During the first 4 weeks I didn’t really see any change, however my fleeting tinnitus went away completely. My tinnitus was always elevated for about 1 hour after treatment but then subsided to the baseline level.

      Throughout week 4-6 I started to notice my tinnitus become more of a high pitched hiss. The volume lowered somewhat to the point I was becoming less and less aware of my tinnitus throughout the day/night. I was also beginning to be able to ‘relax’ and forget about my tinnitus for the first real time since developing it. On 2 occasions I have noticed my tinnitus has pretty much disappeared when going to bed. Overall no change to the tinnitus in my right ear.

      After having my 1st check up appointment with Lenire my device was updated to a new treatment plan. For the first 2 weeks after the update I would say my tinnitus was slightly worse/more noticeable, however Lenire has made me aware that this may happen.

      During weeks 8-10 my head tinnitus began to improve to a constant high-ish pitch hiss, with a bad day (not often) being a higher pitched hiss. My fleeting tinnitus comes back and stays as it was prior to the treatment. The right ear tinnitus has not changed since starting treatment. I’m beginning to be able to relax on a consistent basis, which has brought my anxiety down and I’m beginning to feel like I’m on the way to habituating. I have had another night in which my tinnitus has basically disappeared.

      During week 10 I had a cold so that week was a write off.

      Final 2 weeks and my tinnitus went back to what it was before having the cold, however I feel like I have plateaued. The fleeting tinnitus and the right ear tinnitus are the same as before starting treatment.

      Overall I would say that the pitch of my head tinnitus has lowered a fair bit and it is definitely a hiss now compared to the pure tone it once was. It’s difficult to quantify the reduction in sound level as my tinnitus was quite mild. To me I would say it has reduced a bit, however to someone new to tinnitus it may feel like nothing. During the final assessment with Lenire, they tested the dB level of my tinnitus and said it had reduced. My right ear tinnitus has not changed at all throughout the treatment, this doesn’t bother me too much anyway. The fleeting tinnitus is as it was prior to starting the treatment (very odd that it went away during the first 4 weeks).

      Mentally I am definitely in a better place. Obviously I still have anxiety and feel down here and there, but I can now relax and enjoy down time such as watching TV. I can definitely say I won’t be starting a course of antidepressants.

      I have been asked to continue the treatment with a new setting for a year or as long as I feel fit. I will continue until my tongue tip dies (6 weeks from now) and then stop, unless I see a dramatic change.

      There is one caveat to this whole process. Since starting the treatment I have also started full time work after graduating from university (a very stressful period of my life). Working has definitely given me a chance to forget about my tinnitus and has improved my confidence/mood and social/work life to no end. I feel that this has a major part to play in the improvement over the past 12 weeks. I'm not saying that Lenire has not helped, but I feel settling into a working life has indirectly played a bigger part to my improvement than I thought.

      Sorry for the long post, I hope I haven’t droned on too much.

      I’m happy to answer any questions in the main Lenire thread, however I will be trying to take some time off this forum so apologies if I don’t reply immediately.

      Josh
       
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    14. hans799
      Mellow

      hans799 Member Benefactor

      Location:
      Hungary
      Tinnitus Since:
      Born with it
      Cause of Tinnitus:
      Worsened Dec 2016 by headphones
      Hope I'm not breaking thread rules by replying to another member - although it's a reply, it's a Lenire experience, so should be on-topic.

      Just wanted to say that this is also what I experience - following treatments, the tinnitus is elevated for a while. For me it's just a few minutes and not a full hour, but I definitely noticed the increase. At first it scared me but then I noticed that it is temporary and always returns to baseline and sometimes below baseline so it's nothing to be scared about.

      Old news to you Josh but might reassure someone who's just starting treatment :) Thanks for returning and posting!
       
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    15. Redknight

      Redknight Member Benefactor

      Location:
      Lisburn, N.Ireland
      Tinnitus Since:
      03/2019
      Cause of Tinnitus:
      Unknown
      15 Week Update:

      My 2nd review meeting was last week. Caroline and I had a long and very positive discussion. I have been moved back on to PS1 from PS4, which is the same set of parameters I started out with, and had such positive results with.

      PS1 for the first 6 weeks greatly reduced the volume and frequency of my tinnitus. I was able to start performing well in work again and felt I could habituate to the new lower intensity and volume.

      PS4 for the second 6 weeks really did nothing for me, I just stayed at that same level. In fact, I felt I was perhaps slipping a little backwards because I would get at least 1 day a week where my tinnitus was pre-treatment loud again and my stress was a little raised.

      That said, I was in a much better place and was happy with the treatment results.

      I'm now back on PS1 for a week and a half and I have had another significant reduction in volume and frequency (of noticeable tinnitus). For me, PS1 is working and I don't think I'll switch settings again unless Caroline suggests it.

      Funnily enough, I got the same symptoms as I did in weeks 1 & 2 again; temporary worsening of T after each session and moderately painful headaches, for a few days. These have subsided like they did before and my tinnitus is really almost gone. These symptoms did not occur on PS4, but then again, neither did much else.

      I plan on continuing the treatment until this tongue tip runs out and then taking a break for at least 6 weeks before opening another tongue tip to start another 6+6 treatment.

      My current situation is:
      • Tinnitus only noticeable about 2-3 times per day. Mostly in bed.
      • Little stress or anxiety because of tinnitus.
      • No longer get angry at my kids for making noise.
      • No longer experience misophonia.
      • No reduction in clarity due to tinnitus.
      • Work is going great, I am performing well and enjoying it.
      • My life is piecing itself back together.
      • Volume is about 5-10% of what it once was on average, although it's worth pointing out that my tinnitus has always fluctuated throughout the day/week and still does.
      • Buzziness/hissing is still there, but lighter.
      • Headaches still increase my tinnitus volume.
      • Tinnitus is still somatic, with jaw.
      • No trouble sleeping.
      I now have significant periods of silence throughout the day. I had zero tinnitus at my last review meeting with Caroline, so she didn't do a MML test, because the result would have been 0 dB. Silence is not placebo in my opinion and if it is then I'll take it.

      When it's not silent it is very very quiet with occasional periods of fleeting tinnitus. It's rare to have bothersome tinnitus for more than an hour or so now.

      Can't think of much else for now.

      Hope this helps. I know the main thread has been very negative recently and I do not intend to get involved in that, but I wanted to close out my experience review before getting on with my life.

      A
       
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    16. Liz Windsor

      Liz Windsor Member Benefactor

      Tinnitus Since:
      10/2012
      Hello.

      I just wanted to post my twelve-week update for Lenire, as promised. I went back to Neuromod on Tuesday 12th November, for my fourth, and final appointment. As with the previous times I filled out a questionnaire regarding my tinnitus in the reception area prior to meeting with Ciara and then Caroline, the Audiologist.

      Apart from one occasion when Caroline was on holiday, I have always been looked after by the same Neuromod team, which makes the whole experience very user-friendly, as they always seem so keen to help and are interested in any progress, or otherwise. It never feels as though they are just ‘going through the motions’ as might be the case, probably of necessity, in a much larger organisation.

      I don’t really have any major changes to report but following a long discussion with Caroline, she decided to change my device back to the original PS1 settings which I had during the first five-six weeks of using the device. These were changed at the second six-week period to PS4, which I believe only made a very slight change to the timing of the tongue tip. I have described this in more detail in my previous posts on the ‘Lenire User Experiences and Reviews’ if anyone is interested, rather than repeat it all here. She stressed that it was the ‘change’ of settings that is important, so your brain doesn’t get used to what it’s hearing, and this then drives further neuroplasticity. There are ten or so settings I believe, but if the white noise element of PS1/PS4 doesn’t spike anyone’s tinnitus, these are apparently settings which achieved good results in their trials which is why they start off with them.

      I feel that everything has settled down in my brain after giving up using my hearing aids, nearly seven weeks now. I no longer have the sensation of excessive noise around me, so that’s great. I believe that I can now judge better what changes Lenire is potentially causing to my tinnitus. I have to say that it is in no way any worse. I do notice subtle changes. Odd things like I am definitely sleeping better. Not every night, but often enough to really notice a benefit. Sometimes I sleep for five, six, or even seven hours without waking up for hours at a time in the night, which hasn’t happened in seven years. I can only assume that this is due to Lenire as I have no other explanation for it. Maybe it changes my reaction to tinnitus even when I’m asleep? The other thing is that my tinnitus has always filled my whole head, as though there wasn’t a millimetre of space that wasn’t full of noise, so impossible to tune out or ignore, for me anyway. I now feel as though the sound has shifted ‘outward’, more towards my ears or something, not exactly like it’s an external rather than an internal noise, but definitely more bearable.

      The volume doesn’t feel any different as such but just doesn’t drive me quite so mad. I know this must sound terribly vague but, at the moment, that is just how it feels to me. I feel I’m in it for the long-haul, but I have never really expected any instant results. It’s been with me non-stop for over seven years. I don’t think it’s going anywhere in a few weeks.

      Caroline said that even though my ‘official’ treatment period was at an end, so to speak, although of course I haven’t yet used the device for the final six week period on the new/old settings, that I am always able to speak to them at any time for advice, or email them or go back and see them, should I wish to. I have a follow up appointment in a year’s time. Everything I explained about my reactions to Lenire Caroline said was quite familiar. So, I know I’m not imagining these changes. Just that for some people they respond more quickly, within the six or twelve-week period, other people need longer and, of course, some people may not be helped at all. I’m still pleased I decided to give myself the opportunity to try Lenire and am optimistic that more changes may occur further down the line.

      If anything of interest happens, I will put it here in the Lenire User Experiences and Reviews thread.

      Thanks.

      Liz
       
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    17. Krolo

      Krolo Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      1999 , Worse in September 2018
      Cause of Tinnitus:
      Loud Volume
      Hey all,

      So, Day 1. Picking up the Lenire.

      Super professional experience, went through the unit etc and had a 15 minute try out to see how it felt. I feel that the sounds are quite relaxing and not really annoying at all. I actually have had a reaction to beeps during Audiology testing but the sounds in Lenire are nice.

      Just came back to the hotel and did a 30 minute session. Somehow I have a good and positive outlook on this.
      No feeling of a heightened tinnitus after first session.

      Since a lot of people have come further than me in the treatment I will post an update at my 6 week check-up unless something happens earlier than that. That´s all for now folks.
       
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    18. jmasterj
      No Mood

      jmasterj Member Benefactor

      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Acoustic?
      Finally got back to the States and wanted to update you all on my appointment.

      My hearing test came back pretty similar to what my test was in the last year. I have perfect hearing up to about 2000 kHz and then it starts a gradual drop down to 40 dB loss at 8000 kHz for the most part it is the same in both ears. My tinnitus is primarily in my left ear and is very somatic and I can fluctuate the tinnitus by neck, jaw, and pressing on areas of my face.

      I saw a new audiologist at my appointment as they have added another one for upcoming appointments due to the demand. They have also added another device fitter as well. They are just trying to find more space for the extra staff and additional appointments.

      The audiologist at Neuromod suggested as a possibility at looking at hearing aids. I did some tests here in the States where you listen to numbers in a noisy environment and I had better that average hearing for my age. I am 41. I don't think hearing aids would do much for me since my tinnitus is above 8 kHz. My MML was 58 dB.

      As far as my tinnitus background I initially got very mild tinnitus in 2011 and I was able to habituate rather quickly. I had a major increase in September of 2018. I have no real cause of it and I just woke up with it one day. Possibly my computer volume one day went to max after a restart and I put on earbuds to listen to a web presentation and an automatic video ad played on a website.

      In the end they recommended me for treatment. I will get my device on January 10th of 2020 unless I change my mind.

      I will say that the staff at Neuromod were all very friendly and helpful. They were very clear that many experience tinnitus increases in the early stages of treatment. I never felt pressure to buy the device and they were very transparent that this may not work for everyone.

      I did learn that the tongue tips are made by a small Irish manufacturer and the player device itself is assembled at the Neuromod office. This may be the reason that supply is low or takes time. I don't think they anticipated the desire for this device and don't have a lot of automated manufacturing.
       
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    19. Drone Draper
      Jaded

      Drone Draper Member

      Location:
      U.K.
      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      NIHL, ETD and work stress
      Hello all,

      I've had a break from posting on this forum, initially from a spike that sent me into a bit of a breakdown. I also don't think it's healthy for me to post here longer term.

      I've been using Lenire and would like to share my experiences in the first 12 weeks.


      Background

      My tinnitus started after an acoustic trauma during a very stressful work period in December 2018, so I had suffered from tinnitus for about 8 months prior to starting Lenire. I'm now 39 and otherwise healthy and fit. My tinnitus is bilateral, one ear worse than the other.

      Prior to visiting Neuromod I'd seen my GP, a patronising ENT, whose advice was a leaflet from 2009 (nothing new in the last 10 years, apparently!) and four audiologists (one public, four private). They all offered different insights, most of them said I had a notch at 4kHz, although the extent of that is not 100% determined (we'll get to that in a bit). One said I had a retracted eardrum in my bad ear, so I used decongestants to help with this. One offered me hearing aids with masking, which I had some benefit from initially, as wearing them would let external sounds drown out the tinnitus.

      I've been taking antidepressants (Mirtazapine, 30mg) and occasionally sleeping medicine (Zopiclone, 7.5mg). I've also been seeing a psychologist.


      First visit

      I flew out to Dublin for my first appointment, with the view that I'd fly back the same day. In case any of you are considering this, here's some travel tips:

      1) You are going to Hermitage Medical Clinic, a private hospital on the outskirts of Dublin. Neuromod themselves have offices in the tech centre of Dublin, but that is not where you're going. Hermitage Medical Clinic is in an area called Lucan. You won't see any of actual Dublin on the way there. Therefore, I would suggest getting a taxi, which takes about 30-40 minutes and costs about €35. There's a courtesy telephone on the right-hand side of the main entrance to get a taxi back.

      2) Neuromod is located on the second floor, Suite 38. When you get into the building, walk to the right of reception and get the lift to the 2nd floor.

      upload_2019-11-26_20-8-45.png

      upload_2019-11-26_20-9-17.png

      Ah yes, awful carpet. This offends me on so many levels.

      3) My four meetings with Neuromod were on a Tuesday or Friday. If you are day tripping to Dublin, I would recommend you get as many Tuesday meetings as possible. Friday is a busy travel day, meaning you will have much less leeway traveling to and from the Hermitage Medical Clinic. One of the taxi drivers told me there are two big flights coming in from JFK about mid-day on a Friday and, if you’re unlucky, you could be leaving the airport at the same time as them and be stuck in bumper to bumper traffic. I actually missed my final flight due to this traffic and had to stay overnight in a hotel near the airport – d’oh!

      Once in the suite, I filled in a THI questionnaire and met with an audiologist, who was shadowed by a colleague from Germany. We discussed my tinnitus history, as expected. They had a look at my ears and said I had some wax buildup, but nothing to require sending me away. I would have been gutted if I had been turned away on this account, so my suggestion to anyone considering an international trip is that you get a local audiologist to look at your ears shortly before you go.

      I was also asked about any therapies or drugs I was undergoing. I explained that I was seeing a psychologist and using Mirtazapine (30mg). I know I'd answered this in the questionnaire before this trip, so I was not anticipating a rejection on this basis. I also made it clear that I want to get off this drug ASAP, but that doctors typically will get patients to taper off going into summer, not winter, so I will likely be on this until spring 2020.

      We then did a hearing test. This would be my sixth since getting tinnitus, but only my second in an actual soundproof booth. The other four tests, I was asked to turn around and face away from the audiologist or ENT. I always felt this was kind of BS. I get that they can get decent reads outside of a booth, but is that going to be accurate enough to identify the extent of a hearing loss?

      To my surprise, I didn't show a dip beyond the “normal” hearing threshold at 4kHz. I do have some at 16kHz, but that is in line with my age. Considering the NHS audiologist told me I needed to wear hearing aids for the rest of my life, I was happy to hear this, though I'm well aware of the problems with a PTA test to gauge hearing loss.

      I'd been wearing Widex hearing aids with masking sounds for 6 months at this point, which I had to constantly turn off due the noise being too much, especially when exposed to sudden increases, like someone yelling on their phone. I was in a restaurant once and a gaggle of obnoxious women were screaming during someone’s 40th birthday celebration and I had to take the hearing aids out. I have since stopped wearing and returned the hearing aids.

      I was then sent to meet the Lenire technician and explained the various payment options. I was told that I would need to come back in about 4 weeks to pick up the device, should I decide to go through with it.

      To be honest, this annoyed me a bit. ln future, I think it'd be good to be able to buy the device on initial visit, having to fly back and forth is a bit of a hassle. I know it’s fitted to your hearing profile, but I don't think it requires a lot of changes for each individual. Remember, adjustments to your device on subsequent visits are done on the spot during a 1 hour visit.


      Second visit

      I flew out again a few weeks later to pick up the device. This time I filled in a THI questionnaire and one about my sleep. I then met a different audiologist, and we did the hearing test again. Same result. I even got a printout. I think it's quite depressing that the NHS audiologist told me to wear hearing aids for the rest of my life without showing me an audiogram that would have potentially shown evidence to the contrary. Hearing aids only help for hearing loss up to 6kHz, so it's little wonder I didn't get much benefit.

      I then met with the technician and she showed me how to use the device. To be honest, I thought this was a bit overkill. It's pretty simple to use. I guess they have to have standardised instructions so that some of the fogies who don't know how to use a smartphone can use this correctly, but to me the instructions were a bit patronising. I also used the device for about 5 minutes.

      When given the device, I was presented with a lot of packaging. I got the box for the headphones, the outer packaging for the Lenire device and it was presented in a gift bag. As I was travelling with Ryan Air, I didn’t want to pay more for taking an extra bag. Luckily, there’s a recycling bin on the 1st floor near the lift. Most of the packaging ended up in there and never left the building.

      upload_2019-11-26_20-9-50.png

      Seriously, look at all this waste.

      The treatment itself is pretty boring. My recording has the sound of rain, wind, a piano doing scales and something like an electric chirp tremolo picking the same notes as the piano. I even figured out how to play the music on my guitar.

      I never learned how to read sheet music, but for those of you who are familiar with guitar tabs, it's basically this:

      e e e e e e e e q e e e e q e e e e q
      e|----------------------|-----------------|--------------|
      B|----------------------|-----------------|--------------|
      G|---------3-----4-3----|-3------4-3---3--|--------------|
      D|-----3-4----6---------|-----6-----------|-6--4--3----3-|
      A|---6----------------6-|-------------6---|----------4---|
      E|----------------------|-----------------|--------------|

      e e e e e e e e q e e e e q e e e e q
      e|----------------------|-----------------|--------------|
      B|----------------------|-----------------|--------------|
      G|---------3--6--4-3----|-3---6--4-3---3--|--------------|
      D|-----3-4--------------|-----------------|-6--4--3----3-|
      A|---6----------------6-|-------------6---|----------4---|
      E|----------------------|-----------------|--------------|


      It sounds like the most depressing video game music you can think of. I liken it to funeral music in a Final Fantasy game.

      The tongue tip definitely feels like popping candy. I found my tongue a bit sore the first few times I used it, but I guess the tongue got used to it.

      Post-treatment, I do feel an increase in tinnitus, but it's temporary and fades within 30-90 minutes. It's hard for me to articulate how this increase manifests, I would say my tinnitus becomes more like a ring and is louder.

      I was told that more patients than not perceive an increase in tinnitus during the initial period of their treatment, I am happy to say I did not experience an upwards trend.

      In terms of fitting the treatments in, I've found lunchtime to be the best time to do them. In the morning, I'm usually busy getting ready for work and drinking coffee, both aren't great for using Lenire. I don't really want to get up earlier just to do the treatment, either, as I'm usually up very early for work anyway.

      I did try doing treatments in the evening, however, I found that it left too short of a window between the post-treatment spike and the need to sleep. So lately, I've just been doing the treatments at work. I work for a big bank and the building I work in is huge with an atrium. I just sit down by myself and use Lenire while I work on my laptop immediately after lunch. Nobody's asked what the tongue tip is (yet), but if they asked, I would just tell them. I know some have said they'd be too shy to use this in public, but really... why? Most people are too busy staring at their phones to care what you're doing, and even if they did, what's the big deal? It's not like this is something obscene. You've got a USB connected to your mouth. Whooptie-doo. This also allows me to do something a bit mundane (work) while doing the treatments. Because believe me, the treatments are BORING.

      The first 6 weeks saw some improvement in my tinnitus. I wouldn't say I thought it was getting quieter, but it was more stable. My tinnitus has fluctuated a lot since the onset, and the troubling thing has really been the undulating nature of it. At times, it's sounded like an angry wind, at other times like an alarm going off. I'm a firm believer that pitch and tonality matter as much as volume for tinnitus distress, and I have to say that the tinnitus sound has been more manageable with a steadier, more maskable sound. Of course, longer term sufferers may point out that my tinnitus has been recent and that the improvement could be due to natural healing.

      In the interest of fairness, I think Neuromod has had some positive impact, but prior to using Neuromod, I had seen some improvement. Part of me would like to better understand how much was Neuromod and how much was natural, but part of me also doesn't care. An easier time with tinnitus is always good.


      Third visit

      I was cutting times a bit fine with my flight out to Dublin the third time and I ended up being 15 minutes late for my appointment. D'oh! They still saw me, which was nice of them.

      As usual, I first met with the audiologist, who asked how I was getting on with the treatment and then we did a masking test. As I suspected, my tinnitus volume had not decreased, but the tonality and pitch definitely had. Sitting in the soundproof booth with the headphones on, it was clear the signal was more stable. I then met with the technician, who had adjusted my device for me while I was with the audiologist. The sounds were pretty much the same as before, maybe with a smidge more bass in the background. I went from PS-1 to PS-4 (I think that’s what the treatment protocols are called). I asked how long I should expect to use this device after my 12 weeks were over and was told that patients can continue to use it long term and visit annually for a checkup.

      Being honest, I really do not like flying and will probably hold off on flying back after my final 12 week visit, unless there's some sort of urgent need, like a spike or a technological breakthrough from Lenire. I do think I could use this for a longer period and then see how things evolve. About a year seems like a good time period to categorically say whether I think this treatment has worked for me or not. I was also informed that some patients who live far away may not find it practical to fly to Dublin 4x in 3 months, and for those patients, staying with the initial set of treatment sounds may be an option.


      Fourth visit

      Between my third and fourth visit, I had my ears cleaned, as the wax buildup was noticeably impacting my hearing. I don’t think this impacted my tinnitus, but I do think it helped my hearing. I can hear music more clearly and pick out instruments a bit better.

      For my fourth visit, I again filled in a THI questionnaire and one about my sleep. I think the biggest improvement for me in the last 12 weeks has been in sleep quality. I sleep with earplugs and the tinnitus is much more manageable when I need to catch some shut eye. I often wake up with mild tinnitus these days, though my tinnitus has always been milder upon waking.

      I met with a third audiologist this time around, and we did a minimum masking level test. Between my third and fourth visit, my tinnitus had actually increased by 2 dB. The device technician then adjusted my treatment plan back to the first one.


      Conclusion

      My tinnitus has improved while using Lenire, but it was already improving by the time I started the treatment. After the initial onset in December 2018, my tinnitus got worse and worse for the first 4 months, after which I saw a general, though not linear, improvement. In fact, I thought about not going to my initial appointment, because I wanted to see how much my condition could improve on its own. I quickly reconsidered, when I realised I may not have the chance to go again as easily. I started Lenire about 8 months in, so relatively early on compared to long term sufferers.

      My tinnitus has improved more in terms of pitch and tone than actual volume, which is good. I remember in March, I was sitting in a quiet meeting room with colleagues (about 30-40 dB) and my tinnitus was undulating like an ambulance siren (baa-boo, baa-boo) and thinking “I can’t believe I’m the only person in the room that can hear this, I’m going to go insane!”. Thankfully, that level of noise is not one I experience regularly anymore.


      Would I recommend you try Lenire? It depends.

      First, can you get to and from Dublin relatively easily? For me, Dublin is a 50 minute plane trip away. I don’t know that I would want to travel across the Atlantic to do this treatment. If you live further away, I would consider waiting until the system is available locally.

      Second, do you have realistic expectations of the treatment? While many of us want this treatment greatly reduce our suffering, going into this expecting a full remission of your tinnitus is likely a mistake. Most of the users I’ve come across have had some improvement, like me, but nothing miraculous. You should accept this if you are interested in Lenire.

      Third, do you have the money for the treatment? €2,500 is not a fortune, but it’s not peanuts, either. The average salary in the UK is only £28k, so that’d be 7.6% of your gross salary. Ouch.


      If you have further questions about Lenire, please ask.

      Wishing you a quiet future.

      - D
       
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    20. Krolo

      Krolo Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      1999 , Worse in September 2018
      Cause of Tinnitus:
      Loud Volume
      Week 2 Day 1 - I was thinking long and hard if I am supposed to write but since it´s the 2nd day of same behavior I will share with you.

      My regimen when it comes to Lenire has been 2x30 Morning / Evening. No missed treatments but time has differed a bit. Also sometimes I have been under the influence of some beers when doing the evening one. I do this by sitting with closed eyes and just trying to do a semi meditation of breathing and focusing on the high tempo bleeping tones that are there.

      For the last 3 days my tinnitus has kind of changed. It´s different. In a positive way. Most of all I feel that Lenire is a real cricket sound killer since that sound has become lower. Tinnitus sound fluctuates quite a bit from morning to evening with some different sounds coming and going. Basically in my mind I am instinctively telling myself this is a good rewiring response. All in all a good start and if it all ends up with being on this level I would already feel that the money is well spent so above all this is a lovely bonus that I do hope to be able to get :)

      Cheers.
       
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    21. Drone Draper
      Jaded

      Drone Draper Member

      Location:
      U.K.
      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      NIHL, ETD and work stress
      Just to add.

      Here's a picture of Hermitage Medical Clinic from the 2nd floor. The 1st floor has the staff canteen and on the opposite side of a huge glass wall is a pool.

      upload_2019-11-27_18-48-45.png

      I've also tried to record some of the Lenire "music" and have attached it to this post. My recording couldn't quite pick up the intro properly, but this should give you an idea of the R2D2 bleed that I think is most common.
       

      Attached Files:

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    22. Liz Windsor

      Liz Windsor Member Benefactor

      Tinnitus Since:
      10/2012
      Just to let you know the canteen isn't just for staff. Anyone can use it. I've had several cups of coffee there as I always arrive about two hours before my appointment.

      EDIT: That sounded a bit pompous and abrupt, sorry! I did put a smiley face on but it didn't appear!
       
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    23. Drone Draper
      Jaded

      Drone Draper Member

      Location:
      U.K.
      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      NIHL, ETD and work stress
      Haha, no worries. I actually had a cup on one of my trips. It was... mediocre, as you'd expect from a hospital canteen.
       
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    24. Mentos

      Mentos Member Benefactor

      Location:
      Cracow, Poland
      Tinnitus Since:
      03/2015
      Cause of Tinnitus:
      Noise induced, loud rock concert
      Hi all, I picked up my device today in the morning and I already did my first session in the clinic canteen. No spike after the session, I found the sounds of Lenire soothing, obviously no improvement noticed either. I will keep you informed about my progress in the upcoming weeks.
       
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    25. BigNick

      BigNick Member Podcast Patron

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Unknown
      Week 16

      Spikes and spasms remain gone.

      My tinnitus still fluctuates, it can be softer, it can be intrusive but in the big picture, things are a bit better.

      In hindsight I was pretty depressed at the 12 week mark but I think I'd almost forgotten how bad it was before I started Lenire and just hated the fact I still had bothersome tinnitus at times, but bothersome tinnitus is a whole lot better than suicidal tinnitus.

      I would now recommend Lenire but approach it with realistic expectations. It's hard to quantify but I'd say I've had a 30% improvement.

      I'm still using the device every day and will update if / when there's anymore to report.

      Big hug to everyone, you're not alone X
       
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    26. hans799
      Mellow

      hans799 Member Benefactor

      Location:
      Hungary
      Tinnitus Since:
      Born with it
      Cause of Tinnitus:
      Worsened Dec 2016 by headphones
      3 week update.

      Tinnitus volume seems to be slowly trending down. I get more good days than I did before. I'm having one right now - the tinnitus is maybe 15-20% quieter than it normally is. The name of the product is apt - Lenire means "to soothe" and that's exactly what it seems to be doing. The character of my tinnitus is the same but it's calmer. Quieter. A better neighbor to have in my head. :)

      Sometimes after using the device, the tinnitus gets temporarily worse. But it always resets shortly (by the next morning at the latest). My tinnitus has always been reactive to white noise; maybe this temporary worsening is caused solely by the white noise component of the treatment. I wonder what will happen if I switch to a non-white noise based timing at 6 weeks.

      No adverse events (besides these temporary worsenings) to report. I either meditate or read during the treatments and I began to look forward to these short bits of serenity.

      I remain cautiously optimistic and continue the treatment as planned.
       
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    27. jacob21
      Amazed

      jacob21 Member Benefactor

      Tinnitus Since:
      2008 > 2009 "cured" >2nd onset June 2016
      Cause of Tinnitus:
      Noise Induce ( loud music )
      I stopped using Lenire 2-3 weeks ago, probably because my tinnitus was generally better (good and bad days), with bad days more manageable but still bothersome.

      Hard to say if it was due to Lenire?

      I got 3 bad days last week and decided to start using Lenire again, at least 30 minutes/day for the next few weeks.

      I will keep you posted of the evolution and see if Lenire has a real impact on my tinnitus.
       
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    28. AliceW

      AliceW Member

      Location:
      France
      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      Acoustic trauma - loud noise
      Hello everyone!

      I'm back home with my Lenire device.

      Months and months of waiting and I’m finally able to start the treatment!

      I did three one-hour sessions in a row these last 3 days but tomorrow I will do 30 minutes in the morning and 30 minutes in the evening at the same time each day.

      The first sessions went well, I do not notice an increase in my tinnitus after the sessions. The tonguetip delivers little cracklings, sometimes I feel like small peaks of electricity in areas of the face during the session but not all the time...

      The person who explained me the use of the device told me not to use my phone or screen during my sessions and not to sleep either.

      So I put myself in relaxation mode during my session and I concentrate on the music which by the way is rather relaxing (a mixture of white noise, drops of water, piano notes and sounds like sci-fi "tududu")

      In other news, Neuromod is opening a suite dedicated to them in the clinic in order to offer 5 days of appointments per week. I think this is really good news, the demand is high and I think that if the device did not work they would not open new appointments.

      I cross my fingers for positive results! I will keep you informed as I progress with my treatment.

      Wishing courage to all and keep up the hope!
       
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    29. Mentos

      Mentos Member Benefactor

      Location:
      Cracow, Poland
      Tinnitus Since:
      03/2015
      Cause of Tinnitus:
      Noise induced, loud rock concert
      I just finished 2nd week of my treatment.

      I have noise induced tinnitus after a metal concert I attended nearly 5 years ago. Before Lenire my tinnitus was a head cricket, level 2-3 on a scale of 1 to 10, rather stable. In recent week it started to fluctuate between 1 (very faint sleeping cricket) and 4 (herd of angry crickets).

      After a Lenire session it sometimes spikes for 1-2 hours, then it settles back down. I think these fluctuations can be attributed to Lenire, but it may also be that I check my tinnitus more often expecting changes, it's hard for me to judge since it's so subjective.

      Fact is that before the treatment I was always using in-ear maskers, currently on better days I am able to function without them.

      If it stays on level 1 then it was worth the money spent, but I'm not happy about these fluctuations as I never know to which level I will wake up in the morning.
       
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    30. Drone Draper
      Jaded

      Drone Draper Member

      Location:
      U.K.
      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      NIHL, ETD and work stress
      Stay the course, Mentos. My tinnitus is a lot better now than when I got it a year ago. Part of that is likely due to Lenire.

      I've been using Lenire post-12 weeks, but I've missed a few days here and there due to work. I'll continue.
       
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