Q&A: Tinnitus Hub Meets Neuromod (Lenire)

Discussion in 'Treatments' started by Tinnitus Talk, Nov 13, 2018.

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    1. Paulmanlike

      Paulmanlike Member Hall of Fame

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      Mid-September for European release date sounds likely as I guess they are waiting for the peer reviews to come in before selling it to patients.

      That way they have a point of sale based on proof of efficacy, because at the moment they don’t apart from their word if that makes sense.

      Still will be waiting for the evidence base to build up though, because it is tinnitus after all.
       
      • Agree Agree x 2
    2. drivera2592
      Nerdy

      drivera2592 Member

      Location:
      Garden Grove CA
      Tinnitus Since:
      12/10/2017
      Cause of Tinnitus:
      Concert
      I was in Baltimore on February 10th. How did I miss it??
       
    3. Helheim
      Stressed

      Helheim Member Podcast Patron

      Tinnitus Since:
      01/2017
      Cause of Tinnitus:
      Infection
      I really do wonder how many of us will travel to Ireland when it finally launches though.
       
    4. Bill Bauer
      No Mood

      Bill Bauer Member Hall of Fame

      Tinnitus Since:
      February, 2017
      Cause of Tinnitus:
      Acoustic Trauma
      They sent that notification on February 11. If they were to do it earlier, it would be posted here earlier, and one of us would be able to let us know some of the results being reported...
       
    5. dayma
      Frustrated

      dayma Member Benefactor

      Tinnitus Since:
      1/6/2018
      Cause of Tinnitus:
      UNKNOWN
      A few of us. Just waiting on pins and needles so I can book flights.
       
    6. Krolo

      Krolo Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      1999 , Worse in September 2018
      Cause of Tinnitus:
      Loud Volume
      Yes I read the report. It will be interesting to see how it is applicable to Neuromod even if he is only an advisory.
       
    7. EDDTEKK

      EDDTEKK Member

      Location:
      Belgium
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Infection
      September? Oh my god... I can’t survive that long anymore.
       
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    8. dayma
      Frustrated

      dayma Member Benefactor

      Tinnitus Since:
      1/6/2018
      Cause of Tinnitus:
      UNKNOWN
      That’s nothing official and does not reflect release dates overall.
       
      • Agree Agree x 1
    9. Aklara319

      Aklara319 Member

      Tinnitus Since:
      09/2018
      Cause of Tinnitus:
      Noise
      As I wrote elsewhere, in the Q&A, Dr. O'Neill says that they're looking at an initial release in Ireland and "thereafter, [they're] looking at a number of European countries."

      This seems to suggest a preliminary Ireland release. If anything, it's good news that their European release is in September. They'd likely want to focus dedicatedly on Ireland a few months prior.

      The Irish HPRA approval process for medical devices is separate from the CE mark certification process for wider EU distribution. A separate clinical trial process is not necessary for the latter, which expedites it.
       
      Last edited: Feb 12, 2019
    10. spedgas
      Gloomy

      spedgas Member Benefactor

      Tinnitus Since:
      09/2018
      Cause of Tinnitus:
      Unknown
      My biggest question about this beside efficacy is how people in the US plan on getting one before they are sold in the US. When somebody has a story about traveling to get one and returning to the US I'd love to hear it. I feel like there are many hurdles here to overcome.
       
      • Agree Agree x 1
    11. Arseny
      Wishful

      Arseny Member

      Tinnitus Since:
      2018
      Cause of Tinnitus:
      Possibly from problems with blood flow
      You put headphones on your neck so you look like a basic person.

      You place the electrode with other charging cables in your baggage so it doesn't stand out and looks like just a bunch of USB cables clumped together on the x ray.

      And you place the device in your pocket.

      At the airport security you just place it on the tray along with your phone, keys and headphones and just say it's an mp3 player if anyone asks about it.

      No one will bat an eye.
       
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    12. dayma
      Frustrated

      dayma Member Benefactor

      Tinnitus Since:
      1/6/2018
      Cause of Tinnitus:
      UNKNOWN
      This.
       
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    13. Drone Draper
      Jaded

      Drone Draper Member

      Location:
      U.K.
      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      NIHL, ETD and work stress
      Would they really give it that much scrutiny?
       
    14. dayma
      Frustrated

      dayma Member Benefactor

      Tinnitus Since:
      1/6/2018
      Cause of Tinnitus:
      UNKNOWN
      You mean TSA and customs? Even if they know what it is there is not really a reason to stop it from being brought into the US. The definition in the rules / law is a bit grey though.
       
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    15. Helheim
      Stressed

      Helheim Member Podcast Patron

      Tinnitus Since:
      01/2017
      Cause of Tinnitus:
      Infection
      Probably not, but with the prices of medical devices it's still a pretty big gamble.
       
      • Helpful Helpful x 1
    16. Bob den Hartog

      Bob den Hartog Member

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Noice induced
      Wow. OK, probably late to the game, but although I was aware of this, I thought up until now this would be mostly beneficial to the more 'typical' type of tinnitus that most have, the unchanging tone, and was wary of the possibility that it potentially wouldn't benefit those with 'reactive tinnitus' / hyperacusis like me.

      But just saw the video, and it turns out 'reactive tinnitus / hyperacusis' is actually the most beneficial group! This is SO encouraging (especially after my throwback Tuesday of last night)! :beeranimation:.

      Being 3 months in, this means I have the next months to see if spontaneous recovery sets in, and if it doesn't, that's when this thing releases! And wouldn't mind a trip to Dublin for this, tinnitus/hyperacusis allowing it.
       
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    17. Cal18
      Nerdy

      Cal18 Member Benefactor Advocate

      Location:
      San Diego
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      2010 / 2016 Both SSRI Withdrawal and Mild Hearing Loss
      Is there something very specific that happens when one is getting fitted for the device in regards to settings, etc.? Aside from it only being approved in the UK and having to purchase it in Ireland, what's the benefit, if any, of getting this device from an ENT?
       
    18. Bob den Hartog

      Bob den Hartog Member

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Noice induced
      From what I understood from the Q&A the only important thing is that your hearing picks up on all the auditive signals. So what the audiologist would do to personalize, is check in which frequencies you have (possible) hearing loss, to turn the volume up on those frequencies, to make sure you’re getting the full range. That is mainly why the audiologist is needed. After that, it comes down to check-ups to monitor results.
       
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    19. Rafaa

      Rafaa Member

      Tinnitus Since:
      2012
      Cause of Tinnitus:
      Who knows? I have Patulous ET and ETD + Other things
      How can this be suitable for people with hearing loss if the person cannot hear the sound the Neuromod is putting out?
       
    20. Bob den Hartog

      Bob den Hartog Member

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Noice induced
      Usually, when there’s hearing loss, it’s a (significantly) reduced hearing in those specific frequencies, not a complete deafness to the tone. In this case they’d turn up the volume of those frequencies for you to hear them better.

      If the hearing loss is so severe you are completely incapable of hearing it, no matter the volume, it might reduce chances of the therapy having an effect.
       
      • Agree Agree x 4
    21. EDDTEKK

      EDDTEKK Member

      Location:
      Belgium
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Infection
      I watch the testimonies so often and pray they are not fake. What do you guys think about it?
       
    22. Paulmanlike

      Paulmanlike Member Hall of Fame

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      They look very similar to the DeSyncra (Acoustic CR neuromodulation) testimonies when there was hype about that. Years later, I struggle to find personal testimonies. This is why I keep saying I will be waiting for the evidence base to build up online and beyond before shelling out. If you go to DeSyncra Page they say 4,000 people have been treated with some reporting complete elimination of it. Yet without the evidence, I say hold back.

      From a veteran tinnitus sufferer who’s wasted money in the past on new tinnitus treatments.

      Cautiously optimistic yet vigilante. Yeah mother fucker.
       
      • Agree Agree x 1
    23. Drone Draper
      Jaded

      Drone Draper Member

      Location:
      U.K.
      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      NIHL, ETD and work stress
      I think they seem genuine enough. There's one person on the board who cured her mild tinnitus with it. I think they probably wanted a mix of moderately positive results to show us.
       
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    24. Jack Straw
      Balanced

      Jack Straw Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      The mechanism of bimodal stimulation works for sure. There have been many reports of forum members getting changes in their tinnitus from it. @kelpiemsp even gained complete silence for a short while after never hearing it his entire life before.

      Whether Neuromod works or not doesn’t reflect on bimodal stimulation as a whole. This is a viable treatment. We just have to wait when the most effective one becomes available.
       
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    25. Watasha
      No Mood

      Watasha Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      @Jack Straw, did @kelpiemsp's silence go away?
       
    26. DaveFromChicago

      DaveFromChicago Member

      Tinnitus Since:
      01/2014
      Cause of Tinnitus:
      Headcold/Flu
      I enrolled in the Desyncra Program and very dutifully wore their soundpitched headset 5 hours a day for 36 consecutive weeks. I reported to them that it had as little effect on my tinnitus as shining a flashlight on my head would have had. They said they were sorry but were nonetheless totally noncommittal. This "therapy" cost over $5,000.00 and was not covered by any American Health Insurer.

      I am therefore necessarily wary of any newly hyped treatment.

      However, the fact that MuteButton utilizes electrical stimulation appears to be very promising (given that similar Vagus Nerve Stimulation has been significantly beneficial for the treatment of Epilepsy).

      The fact that all of us are able to be functional in spite of this monstrously invasive condition only proves that great quote from Dostoevsky: "I will give you a definition of humanity. Humans are creatures who can accustom themselves to anything."

      Finally, it has oftentimes felt as if the Glaciers formed the Great Lakes in less time than it is taking Medical Science to develop a truly effective drug and/or treatment for this.
       
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    27. Bam

      Bam Member Benefactor Hall of Fame

      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      Neck/stress
      I never could have imagined that I would have lasted this long in such a state of constant unbearable torture. Every single day I am amazed, horrified and saddened in equal measure that I’m still alive. It’s a fucking surreal condition and creates a stew of emotions that is impossible for others to even begin to understand.
       
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    28. Jack Straw
      Balanced

      Jack Straw Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      It was temporary. He is also in clinical trials so they do different testings, not always having the goal be tinnitus reduction.

      Seeing that it gave him complete silence I can only imagine they are very close to having this be as effective as possible.
       
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    29. Watasha
      No Mood

      Watasha Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      Thanks! So I am guessing his status is stale and he has either come out on the board saying that he is no longer experiencing the silence or you are in contact with him off the board? I hadn't seen an update on it.
       
      • Good Question Good Question x 1
    30. Drone Draper
      Jaded

      Drone Draper Member

      Location:
      U.K.
      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      NIHL, ETD and work stress
      Very interesting, Sir.

      I've been to see two audiologists, one that used to sell the Desyncra Program and one that currently sells it.

      The one who used to sell it said the efficacy of it was "meh" and good results were very hard to get consistently and that people had to sign a huge 23 page disclaimer saying that they wouldn't discuss the program on social media.

      The one who currently sells it said the system works if compliance is high, but that I wouldn't be a candidate as my tones change constantly. Apparently you need a stable set of tones for the tinnitus to die down. He also handed me a leaflet with stats of a very small study of 24 people along with a price list.

      I think maybe the system only works if your audiologist does a great job of matching your tinnitus, but even then, I do wonder.

      One thing I'm wondering about Neuromod - would a customer need to be seen by one of their specific audiologists? Is there no way we could get a local audiologist to send on an audiogram?
       
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