4 ms·

Combining sound with tongue stimulation for the treatment of tinnitus

62 points by nabla9 2y ago

OptionOfT 2y ago
Any people here who tried it and have gotten temporary or permanent relief? What about insurance? Do they pay for it? Last time I checked it was EXPENSIVE.
- Spivak 2y ago
  It's $3500, insurance doesn't pay for it, and it's permanent relief. Don't expect a miracle cure where after you can sit in a totally silent room and not hear the ringing. But it does greatly lower the threshold of noise required for your brain to stop hearing it. Easily worth the money for me even if there will be better treatments down the road. I had to get a bunch of hearing tests done so they could program it for my tinnitus. What the results change in the tones is secret sauce but it's probably minor. I expect there to be a DIY Arduino setup that performs similarly eventually.
  - upghost 2y ago
    Wait what? This is from first hand experience? Do you think you could describe "permanent relief" a little more? That sounds amazing. This is the first I've heard of anyone actually using Lenire, I assumed it was snakeoil.
    - ampiscinbui 2y ago
      I'm not the person you're replying to but I did the treatment, as part of one of the clinical trials in Ireland in 2016 (?). I'd agree with the GP, it lowered my awareness of tinnitus to the point that it no longer bothers me. Hard to say if it made it "quieter", if I focus on I can make it as loud as I want, but I no longer hear it the way you don't hear your fridge even though it's constantly making noise. Prior to the treatment I was extremely distressed and found tinnitus agonizing, I couldn't listen to music for example, even though my hearing is perfect. The treatment is a really weird experience, and it's hard to say of their approach requires all the parts that it used, but it's the only thing that ever improved it. I don't know if their trials are well designed but the people who make it are serious. (by coincidence, their old office was next to mine when they were a tiny operation) For me it was free of course. I think at its present cost it's probably too expensive for most people unless they are desperate. In the trial I spent about 2 months of using the device and the headphones for 2 half hour sessions a day.
      - ampiscinbui 2y ago
        Oh and it's continued to improve in the 8 years since then. I am only aware of tinnitus when someone reminds me now (like reading this thread). This improvement is normal and called habituation, but I feel like you normally need to reach a critical point of acceptance before this happens. If you're primed to be distressed by your tinnitus (e.g. anxiety, depression) you are held back from habituation. I think the treatment was the turning point for me.
        upghost 2y ago
        Thanks, really appreciate the feedback. Mine is loud as all hell, too. I have some good soundprints on some bone conduction headphones that provide significant relief but I'd love for anything to be able to lower the volume on this sucker, or at least be able to ignore it better.
- deleted 2y ago
  [deleted]
PaulKeeble 2y ago
I am extremely sceptical of this because I follow the research for tinnitus and last year a brilliant study came out showing that Tinnitus appears to be caused by the brainstem being overdriven to compensate for nerve damage. I suspect the brainstem being inflamed, which happens in a variety of conditions cause (Long Covid among many others), could likely do this without the nerve damage and also cause auditory sensitivity as a result. People have been trying these movements and other treatments based on the fundamental premise of "brain retraining" and they have never shown and efficacy. Whereas a surgery on a damaged nerve has already been shown to completely eliminate the condition in a person and it looks very likely this will be the answer in the coming years. https://scitechdaily.com/tinnitus-linked-to-hidden-undetected-auditory-nerve-damage-a-step-towards-a-cure/ https://scitechdaily.com/tinnitus-linked-to-hidden-undetecte...
- striking 2y ago
  > they have never shown and efficacy The introduction alone cites 12 other human / animal studies. I don't see why this paper necessarily contradicts your hypothesis (setting aside the fact that evidence of surgery curing tinnitus is not present at the link you included). In fact, later in your link: > “The idea that one day, researchers might be able to bring back the missing sound to the brain and, perhaps, reduce its hyperactivity in conjunction with retraining, definitely brings the hope of a cure closer to reality,” Maison added.
- excalibur 2y ago
  My tinnitus was definitely caused by the same nerve damage that caused my hearing loss. I'd be happy with improvement in either. The article you linked mentions a potential treatment using neurotrophins (drugs) to regenerate the auditory nerve, but you mentioned some sort of surgery. Is that a different surgical approach being developed in tandem?
  - PaulKeeble 2y ago
    It was an injection of stem cells directly on the nerve. They found an appropriate surgical method to put them into the right place. The author of this study contacted me about it shortly after but I can't share the case study yet. There is a group working on it, likely many things it might not pan out and one surgery is not enough to get it approved but its certainly a start. There may be other cheaper ways too with general drugs that are cheaper if they can promote the recreation of the nerves.
hooverd 2y ago
Oh Lenire. I can't believe the FDA approved them with such terrible methodology. More promising IMO is what Auricle/UMich is up to. They have actual controls in their studies for one.
black6 2y ago
I haven't been involved in some time, but I saw a reduction in my tinnitus while experimenting with Steve Gibson's "transcranial neural stimulator." His idea has gone through several revisions (and names) since then, all documented in his newsgroup[1] dedicated to the experiment. It started out as a sleep aid, but as it progressed many ancillary benefits to its use were discovered. 1: https://www.GRC.com/groups/health.tns https://www.GRC.com/groups/health.tns

62 points by nabla9 2y ago

Any people here who tried it and have gotten temporary or permanent relief? What about insurance? Do they pay for it? Last time I checked it was EXPENSIVE.

Spivak 2y ago
It's $3500, insurance doesn't pay for it, and it's permanent relief. Don't expect a miracle cure where after you can sit in a totally silent room and not hear the ringing. But it does greatly lower the threshold of noise required for your brain to stop hearing it. Easily worth the money for me even if there will be better treatments down the road. I had to get a bunch of hearing tests done so they could program it for my tinnitus. What the results change in the tones is secret sauce but it's probably minor. I expect there to be a DIY Arduino setup that performs similarly eventually.
- upghost 2y ago
  Wait what? This is from first hand experience? Do you think you could describe "permanent relief" a little more? That sounds amazing. This is the first I've heard of anyone actually using Lenire, I assumed it was snakeoil.
  - ampiscinbui 2y ago
    I'm not the person you're replying to but I did the treatment, as part of one of the clinical trials in Ireland in 2016 (?). I'd agree with the GP, it lowered my awareness of tinnitus to the point that it no longer bothers me. Hard to say if it made it "quieter", if I focus on I can make it as loud as I want, but I no longer hear it the way you don't hear your fridge even though it's constantly making noise. Prior to the treatment I was extremely distressed and found tinnitus agonizing, I couldn't listen to music for example, even though my hearing is perfect. The treatment is a really weird experience, and it's hard to say of their approach requires all the parts that it used, but it's the only thing that ever improved it. I don't know if their trials are well designed but the people who make it are serious. (by coincidence, their old office was next to mine when they were a tiny operation) For me it was free of course. I think at its present cost it's probably too expensive for most people unless they are desperate. In the trial I spent about 2 months of using the device and the headphones for 2 half hour sessions a day.
    - ampiscinbui 2y ago
      Oh and it's continued to improve in the 8 years since then. I am only aware of tinnitus when someone reminds me now (like reading this thread). This improvement is normal and called habituation, but I feel like you normally need to reach a critical point of acceptance before this happens. If you're primed to be distressed by your tinnitus (e.g. anxiety, depression) you are held back from habituation. I think the treatment was the turning point for me.
      - upghost 2y ago
        Thanks, really appreciate the feedback. Mine is loud as all hell, too. I have some good soundprints on some bone conduction headphones that provide significant relief but I'd love for anything to be able to lower the volume on this sucker, or at least be able to ignore it better.
deleted 2y ago
[deleted]

PaulKeeble 2y ago

I am extremely sceptical of this because I follow the research for tinnitus and last year a brilliant study came out showing that Tinnitus appears to be caused by the brainstem being overdriven to compensate for nerve damage. I suspect the brainstem being inflamed, which happens in a variety of conditions cause (Long Covid among many others), could likely do this without the nerve damage and also cause auditory sensitivity as a result. People have been trying these movements and other treatments based on the fundamental premise of "brain retraining" and they have never shown and efficacy. Whereas a surgery on a damaged nerve has already been shown to completely eliminate the condition in a person and it looks very likely this will be the answer in the coming years. https://scitechdaily.com/tinnitus-linked-to-hidden-undetected-auditory-nerve-damage-a-step-towards-a-cure/ https://scitechdaily.com/tinnitus-linked-to-hidden-undetecte...

striking 2y ago
> they have never shown and efficacy The introduction alone cites 12 other human / animal studies. I don't see why this paper necessarily contradicts your hypothesis (setting aside the fact that evidence of surgery curing tinnitus is not present at the link you included). In fact, later in your link: > “The idea that one day, researchers might be able to bring back the missing sound to the brain and, perhaps, reduce its hyperactivity in conjunction with retraining, definitely brings the hope of a cure closer to reality,” Maison added.
excalibur 2y ago
My tinnitus was definitely caused by the same nerve damage that caused my hearing loss. I'd be happy with improvement in either. The article you linked mentions a potential treatment using neurotrophins (drugs) to regenerate the auditory nerve, but you mentioned some sort of surgery. Is that a different surgical approach being developed in tandem?
- PaulKeeble 2y ago
  It was an injection of stem cells directly on the nerve. They found an appropriate surgical method to put them into the right place. The author of this study contacted me about it shortly after but I can't share the case study yet. There is a group working on it, likely many things it might not pan out and one surgery is not enough to get it approved but its certainly a start. There may be other cheaper ways too with general drugs that are cheaper if they can promote the recreation of the nerves.

hooverd 2y ago

Oh Lenire. I can't believe the FDA approved them with such terrible methodology. More promising IMO is what Auricle/UMich is up to. They have actual controls in their studies for one.

black6 2y ago

I haven't been involved in some time, but I saw a reduction in my tinnitus while experimenting with Steve Gibson's "transcranial neural stimulator." His idea has gone through several revisions (and names) since then, all documented in his newsgroup[1] dedicated to the experiment. It started out as a sleep aid, but as it progressed many ancillary benefits to its use were discovered. 1: https://www.GRC.com/groups/health.tns https://www.GRC.com/groups/health.tns