Q&A: Tinnitus Hub Meets Neuromod (Lenire)
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MemberI went back and watched the first few minutes of the new Q&A video and while the physical hardware in the device may not be different from the one in 2015, the stimulation settings are.
It really sounds to me that they have been guilty of spit-balling and jumping the gun with all this trademarking and marketing rather than slowing down to do thorough trials and fine-tuning.
The other term that comes up a lot is "compliance". That means how faithfully the patients are performing the treatment. If all treatment is done in a clinic, that's one thing, but when you take it home, you're counting on them doing it right. Sure, it would be a convenient excuse to blame the patient for, let's say, not positioning the tongue properly, but at the same time, I'm sure that details like this genuinely do matter.
Simply getting a gross count of those who claim it helped vs. those who don't is really not enough to pass a verdict on this, especially not a verdict on this entire novel class of treatment.
The most frustrating thing is how limited these trials have been. They founded the company in 2010 and have had what, less than 1,000 people use this kind of device?
Good analogy, I'm glad I was given a short sentence, about a year and a half. 2018 is my first full year completely free from tinnitus.
I've really just tried to forget tinnitus was ever in my life! Coming back here to comment (since I saw the video in my inbox) is the first time I've thought about tinnitus for a while now.
Also it's good to note that my tinnitus has stayed away for at least a year now, which is a pretty good result.
One other piece of information. I was invited to go to a presentation of Neuromod Tinnitus Clinical Trial Results in Dublin, it was on the 11th of December 2018.
Unfortunately I was unable to go, it was the same day as my mom's birthday and on the other side of the country.
Speakers were Mr Brendan Conlon, Prof. Berthold Langguth, Prof. Hubert Lim. I was also given an invitation for my GP (doctor).
It mentioned that GP's may be interested in learning about the design and outcome of the trial as well as information about the treatment.
I think this event is a good sign that they will be launching the device hopefully in the near future.
Unfortunately I was unable to go, it was the same day as my mom's birthday and on the other side of the country.
Speakers were Mr Brendan Conlon, Prof. Berthold Langguth, Prof. Hubert Lim. I was also given an invitation for my GP (doctor).
It mentioned that GP's may be interested in learning about the design and outcome of the trial as well as information about the treatment.
I think this event is a good sign that they will be launching the device hopefully in the near future.
Hi Glenn, where do you see that in the video?
They actually built in technology to track compliance. They even had sensors to report whether the device was making good contact with the tongue (see video @ 13:20).
Yup if they launch it internationally but I guess that would take a lot of time.
In the meanwhile I would like to read more about the device's success stories from this forum members like yourself.
Although I do not wish the tinnitus to go away completely, I just want the device to reduce the tinnitus severity to a lower level because I am very much habituated to a low-level tinnitus, but the loud frequencies are somewhat annoying - not all the day, just when I'm about to hit the bed.
ruben ruiz
Member
This is wonderful. People, is there any device or med that works for everyone who uses it. No.
Yet it has worked for many people. Fantastic!
The price will be associated to how successful the device is. The more people it is able to assist the higher the price. Economics 101. If it's high time to borrow money.
What would be nice is if the device was able to be calibrated to more than one person and that different calibrations are allowed to be used.
That way maybe two or three people could buy it and all could use it. But I doubt this will happen. I can't wait...
Yet it has worked for many people. Fantastic!
The price will be associated to how successful the device is. The more people it is able to assist the higher the price. Economics 101. If it's high time to borrow money.
What would be nice is if the device was able to be calibrated to more than one person and that different calibrations are allowed to be used.
That way maybe two or three people could buy it and all could use it. But I doubt this will happen. I can't wait...
@2:38 "A number of different stimulation settings on the device and looking at the effects of those settings."
@3:46 "There's a lot of literature emerging that different parameters might drive different effects..."
@4:35 "We've also had some learnings about stimulation settings we can drive further benefit from"
@3:46 "There's a lot of literature emerging that different parameters might drive different effects..."
@4:35 "We've also had some learnings about stimulation settings we can drive further benefit from"
It's hard to connect these statements to the timeline vis a vis MuteButton vs. this newest trial but it suggests that the way the tones and stimulation are configured is a continual work-in-progress. And really, it makes sense. They only have two ways of improving the results: experiment with the treatment regimen and narrowing the types of patients who receive the treatment. Although the video focuses on the latter (with all the talk about hyperacusis) it sure seems like they've also attempted to find better stimulation settings.
These are some excellent points! With what you wrote in mind, I wonder why O'Neill didn't emphasize the stimulation settings as a difference between MuteButton 1 and MuteButton 2. One can only speculate. Either way I think a lot of things fall into place in my mind now. Thanks for your response!
Sorry, I don't know, they never told me a specific frequency. I never really thought to ask that.
Yes, they did have technology to track compliance. I REALLY wanted it to work so I never missed a session, ever! Yes, there was a sensor that detected proper tongue contact, if I remember correctly, there was an alert or beep and the session was paused until proper contact was made again.
- Feb 17, 2017
- 10,400
- Tinnitus Since
- February, 2017
- Cause of Tinnitus
- Acoustic Trauma
Hi Clare, I hope you don't mind me asking but did the onset of your tinnitus coincide with pregnancy or delivery? If so, I think there are some young moms that could benefit from your experience. TC
You, my friend, are a smart one. If I have the opportunity to try this product and it is efficacious - imma treat it like fcking gold.
Alex Matyjasek
Member
According to Ross O'Neill yes, the nature of tinnitus is not an issue from what I understand.
- Feb 17, 2017
- 10,400
- Tinnitus Since
- February, 2017
- Cause of Tinnitus
- Acoustic Trauma
Is it the case that the sooner after onset one tries it, the better is the expected outcome?
No, time was not a factor either, though they had a trial criteria of max 5 years of tinnitus which does make me a bit nervous because I have had it for 6 years.
I wouldn't be worried. If you've had tinnitus for 5 years I'm sure one more doesn't make a big difference.
- Feb 17, 2017
- 10,400
- Tinnitus Since
- February, 2017
- Cause of Tinnitus
- Acoustic Trauma
If it was as effective after 5 years as after 1 year, it is reasonable to expect that it ought to be effective after 6 years...
My tinnitus started 15 years ago but about 2 years ago I was rewarded with a new tone, mainly in the right ear... constant 4300 Hz... if I could just treat this one tone, it would be enough to make me happy... I guess the 5 year limit was also to preserve the output of their trial... Plasticity might take more time to show results when it's already been 15 years your brain feeding it.
I just hope a few months more of stimulation would show results.
That depends on how much they feel their reputation was being damaged by the MuteButton trial. If they felt they pulled back early enough to avoid bad publicity then they wouldn't feel like they have so much to answer for.
The general vibe I'm getting is that researchers still don't know exactly how this treatment works well enough to tailor the tones and simulation down to a laser-like focus per-patient. It just seems to be more like a buckshot approach and hence the results are still all over the map--hence them trying to identify groups that just happen to respond to the treatment as-is.
Patent issues aside, staying vague on their methodology may be a way to avoid admitting the above.
drivera2592
Member
I really hope everything you are stating is true and that there is some real help on the way.
I agree.
And remember that Clare B said the treatment began to take effect in the last sessions.
Maybe we should prepare to read negative testimonies during the first weeks. :S
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