Q&A: Tinnitus Hub Meets Neuromod (Lenire)
- Thread starter Tinnitus Talk
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MemberAw I wasn't laughing in a mean way, just at the silence silence post. I am amused at how we are all so incredulous/gobsmacked that someone has actually got proper silence because tinnitus is normally such a relentless river of shit.
LMFAOOOO I feel yah! It's SHOCKING & good newssss!! It's still a bit unbelievable until we actually have improvements with our tinnitus. Hopefully it's all a SUCCESS!!
- May 29, 2018
- 1,161
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- Neck/stress
If I ever met @Clare B I think I would just stare at her in amazement for several minutes.......The miracle woman.
If I'm honest though I do suspect she might have just naturally lost her tinnitus and the device was coincidence. As much as I don't want to believe that!
From what I understood the device does not have any impact on sound sensitivity. But it seems to have cured your hyperacusis as well as tinnitus? Gives me some hope... (my tinnitus is there, but hyperacusis is my problem).
I see from Clare's post history that she had her tinnitus for 1.5 years.
@Clare B has been so helpful I'm sure if she comes back she won't mind telling us how long she had tinnitus before she began to use the trial device and whether she feels it was definitely the device, or whether she had prior improvement and it might have been a natural improvement over time.
She had unrelenting tinnitus for years. Had the therapy applied and it went away right afterwards. Yes, it might have been just a coincidence, but Occam's Razor says that the tinnitus went away because of the therapy that was specifically designed and proven to treat tinnitus, not because of a freak coincidence.
It's hard to believe after so many bleak years, but there's real reason for optimism and hope here.
This is totally confusing now, because in the interview they say that they are not adjusting it to the patient's tinnitus, but to their audiogram? Or am I missing something?
I watched the interview, looks pretty promising.
One thing that I was not sure got cleared up -- they do a profile of your audiogram and use that and only that.
Yet they state that they do not exclude any type / frequency of tinnitus, however, if an audiogram does not go higher than 8 kHz, how do they address high-frequency tinnitus, above 8 kHz?
Am I correct that this was not addressed or did I miss something?
One thing that I was not sure got cleared up -- they do a profile of your audiogram and use that and only that.
Yet they state that they do not exclude any type / frequency of tinnitus, however, if an audiogram does not go higher than 8 kHz, how do they address high-frequency tinnitus, above 8 kHz?
Am I correct that this was not addressed or did I miss something?
I agree that it's vague. All I've been able to glean is that the treatment regimen itself, even if it's one-size-fits-all, has gone through refinements over time, which would make sense with something this experimental. This is why I believe that the results they publish at any one time should not be viewed as a final verdict on this class of treatment.
This is getting down into the weeds but what I don't particularly understand is the actual cause and effect mechanism. If they are acting under the assumption that stimulating a frequency and matching it with a pulse through the tongue trains the brain not to fire off tones in (adjacent?) frequencies impacted by tinnitus then it would make sense to constrain the device to tones in and around the tinnitus range. If you stimulate on a frequency that is not impacted by tinnitus then you're just eating up time during the 30/30 min sessions doing nothing which would mean it might take more sessions total to get the same result vs. more precise stimulation. How much that time-wasting factor matters I don't know. Maybe having it randomly cycle through a broad range generally known to be where tinnitus happens is more of a "nuke it from orbit" approach to insure everything is covered since otherwise you're relying on the subjective mapping of tinnitus frequencies of the patient. With white noise it's hard to isolate individual exact frequencies.
They do this test to get a rough measure of how loud, in dB, you perceive your tinnitus vs. to the actual tinnitus loudness, they probably did the same test after treatment to see if there are any changes in perceived loudness.
It is a pretty rough estimate as it is very difficult to match the exact frequency, but at least they get an idea.
Yes this is unclear to me, too. My understanding is that the tongue stimulation primes the brain to listen for a sound that it should ignore, then the audio signal shows it the sound that needs to be ignored. It's like "Listen, ignore this!" "BEEP" "Listen, ignore this!" "BEEP" looped round and round. However, reality seems to be more complex.
- May 29, 2018
- 1,161
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- Neck/stress
I'm not so sure. She and what sounds like fairly mild intermittent beeping tinnitus for 18 months. It could easily be coincidence I'm afraid.She had unrelenting tinnitus for years. Had the therapy applied and it went away right afterwards. Yes, it might have been just a coincidence, but Occam's Razor says that the tinnitus went away because of the therapy that was specifically designed and proven to treat tinnitus, not because of a freak coincidence.
It's hard to believe after so many bleak years, but there's real reason for optimism and hope here.
- May 29, 2018
- 1,161
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- Neck/stress
I've collected quite a lot of stories about going away after longer than a year. Tend not to be longer than four years.
@Steve, @Markku,
There is one thing I am wondering about in the video.
Neuromod says (at minute 15:35) that they see hyperactivity in the brain (in auditory brain stem structures) etc.
I am wondering if they have also checked the brain again for people who had an improvement. If tinnitus gets lower, the hyperactivity should get lower and that should be seen in brain scans, too. This would be proof the device works.
Steve, did they mention something about this?
Thanks in advance.
There is one thing I am wondering about in the video.
Neuromod says (at minute 15:35) that they see hyperactivity in the brain (in auditory brain stem structures) etc.
I am wondering if they have also checked the brain again for people who had an improvement. If tinnitus gets lower, the hyperactivity should get lower and that should be seen in brain scans, too. This would be proof the device works.
Steve, did they mention something about this?
Thanks in advance.
When Neuromod launched MuteButton in 2016, it was at Hermitage clinic in Dublin.
Perhaps they will do the same thing with new device this year...
Does any Irish people here (@RCP1 or others) know this clinic and can get more details from them directly if they will collaborate again together (the ENT unit)? And if we can book an appointment yet?
@Clare B: Did you go in a clinic/hospital or directly in Neuromod's office to make the trial?
Perhaps they will do the same thing with new device this year...
Does any Irish people here (@RCP1 or others) know this clinic and can get more details from them directly if they will collaborate again together (the ENT unit)? And if we can book an appointment yet?
@Clare B: Did you go in a clinic/hospital or directly in Neuromod's office to make the trial?
Maybe @Steve should have a go first? Steve you about? I am happy to drive down to their clinic if need be...
They followed my progress for just the 12 month period, that was the length of the trial. My tinnitus had completely gone by that last check up at 12 months. They are not contacting me now for outcome data or for anything else. The last time they contacted me was last November to invite me to a presentation of results of the Neuromod device, I wasn't able to attend unfortunately.
I had my tinnitus for a year and a half before using the device.
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