Lenire — Bimodal Stimulation Treatment by Neuromod

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

    1. Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      That's not strictly true. Neuromod told me that nearly every other trial patient suffered an increase but everyone who did either improved OR it went back to baseline. Absolutely no one suffered permanent increase.
       
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    2. Agrajag364

      Agrajag364 Member Benefactor

      Tinnitus Since:
      09/2017
      Cause of Tinnitus:
      Unknown
      Worsenings were described in the PowerPoint presentation of the data @annV posted, and they were also described in the video interview done with Neuromod. However in the video interview the Neuromod employee said "most" of those worsenings resolved. I transcribed what he said in the video:

      "Have patients gotten worse? There were a small number of patients who have gotten worse, erm not dramatically, their tinnitus might have gotten, you know, elevated. These patients, they were asked whether they wanted to discontinue the treatment or continue, a lot of them continued. Eh, most of those cases then resolved, so we haven't had any serious adverse events in the study, and eh so we haven't had any very... just very, kind of, yeah well this term "serious adverse events", you know so there aren't any patients we're very very concerned about. And the majority of patients did actually, in patients that, some patients experience some change at the start which is probably to be expected at the start if you are doing something, if you are disrupting this kind of neural processes there is going to be change".



      35 mins 50 secs.
       
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    3. TinMan2019

      TinMan2019 Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Anxiety / Unknown
      I'm about 2 weeks 4 days into my Lenire treatment.

      My tinnitus was spiking for most of the first couple of weeks except a day here and there, but yesterday it was like it went away... well ok maybe to a 1 or 2... which to me is like it's gone!

      It's back today but back to a normal 'pre-level' treatment. So that's a positive sign I guess!

      Although I said a few pages back I wouldn't bother going back, given I'm in the USA and well it's expensive, I'm actually all booked up to return in October. In all honesty though I don't think it'll be for anything more than an audiogram and a quick 15 minute chat and to fill out one of their psychological questionnaires for their future use.

      They also called me to see how things were going. I did mention that I had an increase and they said that was common among the trial participants.
       
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    4. Mathew Gould

      Mathew Gould Member

      Tinnitus Since:
      6/2017
      Cause of Tinnitus:
      Neck/Jaw misalignment
      I have reactive tinnitus too. What does your tinnitus sound like? Does any sound mask it? Does the tinnitus go way up when you hear sound?
       
    5. Fabrikat

      Fabrikat Member

      Tinnitus Since:
      1973
      Cause of Tinnitus:
      Otosclerosis then volume then viral infection
      Which leads to my own theory that if one swapped the tonguetip and plugged in electrodes that attached to the back of the neck, it would be the equivalent of Susan Shore's device.

      Timings should be the same.
      It's just stimulating a different nerve. It'll take a game DIY hacker to test this theory though.
       
    6. ChrisBoyMonkey

      ChrisBoyMonkey Member Podcast Patron

      Location:
      CA
      Tinnitus Since:
      04/2019
      Cause of Tinnitus:
      U.S. Army/Field Artillery Veteran
      Awesome news. That's gonna be where they change the settings.
       
    7. Chriscom

      Chriscom Member Benefactor

      Location:
      Northern Virginia USA
      Tinnitus Since:
      May 2019
      Cause of Tinnitus:
      Likely infection/ear stress after walking pneumonia
      Thanks for this report, and same goes to all who have reported and will do so going forward.
       
    8. foam

      foam Member

      Tinnitus Since:
      7/2019
      Cause of Tinnitus:
      Unknown
      Great to read about Lenire. Being someone that only got tinnitus 40 days ago I seemed to have picked a good moment in time to get it... Well it's been a rough 40 days but I couldn't imagine having it for 20 years with no treatment in the pipeline, although I guess it'll take years to arrive to Australia.
       
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    9. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      It’s probably a bit too pretentious to even think that any tinnitus treatment will be a smooth sailing, for now at least!

      Considering tinnitus complexity and that even what’s on offer as treatment is still pretty much experimental and hit and miss, it’s plain irresponsible not to count on possible worsening, temporary or permanent.

      Personally I would be very suspicious of anyone telling me that my tinnitus DEFINITELY WON’T get worse from a treatment that is still in research phase.

      By saying that I agree with you that anything making it worse is a reason for concern.

      But we are still at least a decade away from anything that will hold absolute certainty when it comes to tinnitus! Until then we need to consider all possibilities!
       
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    10. acute
      Depressed

      acute Member

      Location:
      Spain
      Tinnitus Since:
      04/2019
      Cause of Tinnitus:
      Loud music. Stress, long taking meds, Invisalign ?
      Happy to read this.
       
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    11. dayma
      Frustrated

      dayma Member Benefactor

      Tinnitus Since:
      1/6/2018
      Cause of Tinnitus:
      UNKNOWN
      I don’t think anyone knows how the timing compares. Michigan published theirs at one point but I never saw Neuromod’s or Minnesota’s. The timing is the key to all of this and why the DYI stuff fails mostly.
       
    12. Chris809

      Chris809 Member

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      noise-induced
      Same, and he also said he had very reactive tinnitus, which two of the testimonials had, so this should give us hope that if the device is set with the right sounds it should eventually desensitise our ears!
       
    13. Sytex75
      Wisdomatic

      Sytex75 Member

      Location:
      Merritt Island Florida
      Tinnitus Since:
      1/1/15
      Cause of Tinnitus:
      Working aircraft on tarmacs
      20150121_122428 (1).jpg

      I know it's way too early to do a happy dance, but for those that are feeling some improvement this is one fella who across the pond is is giving two thumbs up. Hope it continues for you.
       
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    14. Hanna2019

      Hanna2019 Member

      Tinnitus Since:
      8 weeks ago
      Cause of Tinnitus:
      Not sure maybe TMJ related
      Can I ask what is the cause of your tinnitus? Is it nerve damage? TMJ? Not known?

      I was thinking of doing the Shore trial which is a flight away on a weekly basis which is a lot as I don’t live in the area and wanted to ask how helpful was it for you? And for how long did you need to come in?

      Thank you so much.
       
    15. Fifth Business

      Fifth Business Member Podcast Patron

      Tinnitus Since:
      2018
      Cause of Tinnitus:
      Deafening applause (ppl clap loudly after reading my posts)
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    16. Simon Czt

      Simon Czt Member

      Location:
      France
      Tinnitus Since:
      06/2018
      Cause of Tinnitus:
      Acoustic trauma
      Do you think Lenire could also help people with pulsating tinnitus whose cause is unknown?
       
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    17. AliceW

      AliceW Member

      Location:
      France
      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      Acoustic trauma - loud noise
      I was talking with a researcher specialized in TTTS and hyperacusis in CNRS (Marseille, France):

      He thinks that Lenire really can help TTTS, by its action on the trigeminal nerve ganglion, normalizing the inputs. That's probably why @Clare B and @kelpiemsp saw their sensitivity to sudden noises disappear as the tinnitus was improving.

      He wants to measure my ears' reactions before and after Lenire treatment.
       
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    18. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I'd be surprised if it worked with PT, given PT's origins.
       
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    19. Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      A high pitched ssssssszzzzzzzz.

      Depending on what bastard of a mood it's in, some sounds can mask it. When I listen to Lenire it's like a gradual increase and it just stays with me for the day.

      I'm hoping with the removal of the hiss/rain like effect I can commit to 2 x 30 minute sessions and start to see some improvements. I can handle the dum dum DUM dum DUM DUM dum DUM dum DUM piano & chirps.
       
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    20. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

      Location:
      temporarily banished from this plane of existence.
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      karma
      Primarily noise damage. History of severe childhood ear infections leading to scarring of the ear drum on the worse ear, though; also history of drug exposure.
      I did it because I had a ton of disposable income at the time and it was a way to get out of the city I was in (which I hated) and treat myself to mini vacations to Ann Arbor to get treated, get hope for the future, and also just enjoy hanging out in a cool town as a (temporary) bachelor. I would fly in on a Thursday, be seen, stay through the next Tuesday, be seen again, then go home until the next Thursday and do it all again.

      The frequency I was seen at may be different than the current trials (which I believe are longer?) and I also saw elsewhere in this thread that they are simply not accepting travel candidates at all at this point, but I do not know if that's true.

      I'd say if you have the cash to burn and wanna see a relatively cool part of the country, do it -- and make sure to spend some time in Detroit! But, it's not going to fix you long term or do anything besides maybe shine a light on if tech like this will work for you once it is available.

      I figure I spent about $10,000-12,000 doing the travel and everything else related; if I had been more budget conscious, maybe I could have done that for 5-6 (though I often stayed at an AirBnb that was only $35/night, and I didn't go too insane with fancy dinners or anything). For that cost, at this point, I think you could also probably just go get an appointment with Lenire, do your 4 visits in Ireland, and try that. I trust UMich's data more, but, with Lenire if it works for you, then you just have it.

      So, what are you looking for? You wanna pay to be a lab rat to help the US tech be better, if and when it's available? Or do you want to buy a commercial product that's available now? Either of these things seem like low-five-digit investments.
       
    21. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

      Location:
      temporarily banished from this plane of existence.
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      karma
      Have you tried listening to it without using the tongue piece? That would give you a pretty good idea if the spikes you're getting are purely noise related, or not.
       
    22. Mathew Gould

      Mathew Gould Member

      Tinnitus Since:
      6/2017
      Cause of Tinnitus:
      Neck/Jaw misalignment
      Some noises like rain or the shower mask mine, even white noise sort of... However the TV and my loud furnace make it louder or reactive.
       
    23. Redknight

      Redknight Member Benefactor

      Location:
      Lisburn, N.Ireland
      Tinnitus Since:
      03/2019
      Cause of Tinnitus:
      Unknown
      Dum Dum DUM dum DUM sums it up well @Allan1967.
       
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    24. ChrisBoyMonkey

      ChrisBoyMonkey Member Podcast Patron

      Location:
      CA
      Tinnitus Since:
      04/2019
      Cause of Tinnitus:
      U.S. Army/Field Artillery Veteran
      South Park mormon music reference?
       
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    25. Dizzyhead888

      Dizzyhead888 Member Benefactor

      Tinnitus Since:
      2015
      Cause of Tinnitus:
      unknown
      My appointment is September 13th.

      Are you Irish citizen or traveling to Ireland like me?
       
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    26. Redknight

      Redknight Member Benefactor

      Location:
      Lisburn, N.Ireland
      Tinnitus Since:
      03/2019
      Cause of Tinnitus:
      Unknown
      You can't, it shuts off after 30 seconds.
       
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    27. Krolo

      Krolo Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      1999 , Worse in September 2018
      Cause of Tinnitus:
      Loud Volume
      I will be travelling in. Where are you travelling in from?
       
    28. ruud1boy

      ruud1boy Member Benefactor

      Location:
      Huddersfield, UK
      Tinnitus Since:
      c.2006
      Cause of Tinnitus:
      An enthusiastic youth
      That does make me question why the white noise / rain sounds are in there in the first place? If they can be removed, what are they supposed to be doing while they're in the mix?
       
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    29. Phi

      Phi Member

      Tinnitus Since:
      02/2016
      Cause of Tinnitus:
      Loud Noise
      Hi,

      I noticed your positive post in the user experience thread. I’m glad to see you are getting relief. I will receive my device in November. Do you mind me asking how long you have had tinnitus and has it ever improved to this extent before you started using Lenire?
       
    30. PeterPan
      Nerdy

      PeterPan Member Advocate

      Location:
      Sydney
      Tinnitus Since:
      09/2016
      Cause of Tinnitus:
      Heat Exhaustion
      Hello,

      It's PeterPan here again, the volunteer who is helping with the User Experience Group.
      We (@Markku, @Hazel and I) had a strategy session yesterday, and also reviewed the progress to date.

      To date we've had 177 sign-ups, with 33 confirmed appointment dates and all of these dates are prior to the end of the year. We will be publishing the results of the survey on Tinnitus Hub (in aggregate form, no personal information) 12 weeks after this which means around the end of March, 2020. 12 weeks is the duration of the treatment. We anticipate a sample size of about 30, which should be reasonable.

      We're also getting some interesting information about pre-treatment Tinnitus and how it is correlated with various other parameters.

      For example, to date we can see that the TFI score (the score used to assess the severity of tinnitus) is:
      • TFI is strongly correlated with perceived loudness (as expected)
      • TFI is negatively correlated with duration (as expected)
      • TFI is negatively correlated with the extent of hearing loss (not expected!)
      We only have a sample size of 13 completed initial surveys to date, but we should have a reasonable sample at the end of the year. At the end of the year (say in early January) we will publish this type of information.

      If you have an appointment, but haven't signed up yet, it would he fantastic if you could as this will really help the tinnitus community. If you have signed up and given us a date, it would be a great help if you could do your surveys on time.
       
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