MemberIt's a bit mind boggling that in this day and age you can't just hook up the device via usb to your laptop and download the new program. Perhaps the device needs to be checked, calibrated or something to that effect?
Lenire — Bimodal Stimulation Treatment by Neuromod
- Thread starter Tinnitus Talk
- Start date
- Aug 28, 2019
- 1,496
- Tinnitus Since
- -
- Cause of Tinnitus
- -
Founder@PeterPan has just finalized it. It's now being circulated within a private feedback group for any last minute feedback.
This Sunday I, Hazel and PeterPan will meet up to discuss the collected feedback and then we'll publish it as soon as we can.
Guys - PeterPan has done a hell of a job with this one. We're talking hundreds of hours of unpaid work. I just want all of our members to think, would you volunteer your time and expertise as generously to our shared cause? If we had more PeterPans, I can only imagine where that could lead us.
I think this whole project requires some sort of case study at the end of it. I want to highlight PeterPan's efforts and show people what it really took to project manage it.
For people who joined the Lenire User Experience Group and reported TFI (29 people), 14 people or 48% reported a clinically significant change (reduction of 13 or more points). This reduces to 40% when we include people who dropped out due to adverse outcomes (6 people or 17%). We saw some correlations with some patient factors as well.
The report should be out soon.
Hi Daniel. I flew with Ryanair, they had direct flights between Dublin and Budapest. Since I really didn't want to be late for any of the appointments I flew in the night before and spent the night there so that I would have some buffer in case of a flight delay.
(Which, by the way, never happened, Ryanair was very reliable on all 8 flights.)
Since Neuromod was talking about clinically significant improvement for 67%, the 40-50% figure is pretty reasonable, especially considering the low sample size and the possible selection bias (as Tinnitus Talk tends to attract the worse cases).
To me this further proves that Lenire really does work for many people. As far as I know it's the first tinnitus treatment in history that actually is effective and not just pure snake oil.
It's a Generation 1 product, Generation 2-3 bimodal treatments will undoubtedly be better, so even if someone's unconvinced about Lenire itself, watching the bimodal stimulation space will be well worth it.
Off to my morning tongue-zapping!
I see my hope that the Tinnitus Talk report would end the controversy here was overly optimistic...
I await the report but I still stand by it being a glorified placebo machine with an unacceptably high number of people made worse off.
Unless there were more participants in the user study than those who posted in the thread with better results, the improvements they reported do not seem worth the tangible risks of worsening and the high cost at present of travel to and from Dublin (assuming no COVID-19 restrictions). That is a subjective call and hence everyone will never agree. But it sure trumps semantic arguments on whether Lenire should or shouldn't be classified as "effective". It's certainly not results meeting the initial hype that brought me here in the first place, and NO, I was not expecting Lenire to make tinnitus symptoms completely go away so let's not go through another round of strawman arguments.
I await the report but I still stand by it being a glorified placebo machine with an unacceptably high number of people made worse off.
Unless there were more participants in the user study than those who posted in the thread with better results, the improvements they reported do not seem worth the tangible risks of worsening and the high cost at present of travel to and from Dublin (assuming no COVID-19 restrictions). That is a subjective call and hence everyone will never agree. But it sure trumps semantic arguments on whether Lenire should or shouldn't be classified as "effective". It's certainly not results meeting the initial hype that brought me here in the first place, and NO, I was not expecting Lenire to make tinnitus symptoms completely go away so let's not go through another round of strawman arguments.
My opinion is that Lenire should not categorically be rejected. Yes, maybe their treatment hasn't lived up to our expectations. Yes, they were also creating such expectations, but what do you expect of a company that has to make profits? I am happy they exist because that alone increases our chances of getting something much better in the coming years. Ok yes, Shore device and maybe Minnesota are gonna come out first and they seem much more promising at the moment. But maybe Shore and Minnesota will use the already established distribution channel of Lenire...?
Don't know though how I should consider the potential worsenings that come from Lenire (which drove Allan1967 over the edge)...
Don't know though how I should consider the potential worsenings that come from Lenire (which drove Allan1967 over the edge)...
- Jul 8, 2019
- 1,160
- Tinnitus Since
- 1991
- Cause of Tinnitus
- Loud Music / family history
Another very pressing concern is what happened with @AliceW.
She reported an onset of trigeminal neuralgia just after starting with Lenire that forced her to stop the treatment. She hasn't (to my knowledge) returned here since to update. I hope things settled down for her.
- Feb 11, 2019
- 801
- Tinnitus Since
- 01/2014
- Cause of Tinnitus
- Headcold/Flu
Very valuable, insightful commentary UKBloke:
I mentioned that case to my ENT Doctor and he replied that tinnitus is a mosquito bite itch compared to the relentless pain from trigeminal neuralgia (such that it is also on various websites described as "the suicide disease".)
I mentioned that case to my ENT Doctor and he replied that tinnitus is a mosquito bite itch compared to the relentless pain from trigeminal neuralgia (such that it is also on various websites described as "the suicide disease".)
Just this morning I asked her if she still has neuralgia.
She didn't answer me yet. I'll keep you informed.
Trigeminal neuralgia is the main reason why I didn't want to try Lenire.
We also used TFI rather than THI which Neuromod used. According to the medical literature, a 7 point difference in THI represents a clinically significant change, whereas for TFI it is 13. THI and TFI are supposed to be very closely correlated, so not sure why there is a difference. I can redo the numbers using 7 instead of 13. I suspect the results would be around the 67% mark using 7 (can check later...!).
- Apr 15, 2017
- 1,419
- Tinnitus Since
- 2008
- Cause of Tinnitus
- Noise
@PeterPan
Thank you so much for your time and work on this project. As a member of Tinnitus Talk for several years, I for one truly appreciate it.
I have watched the Neuromod story since the beginning.
I agree with Hans but I also agree with GlennS too.
It may very well be the early days of neuromodulation and there are Susan Shore's and the Minnesota device following, along with Hubert Lim at Neuromod perhaps advancing this technology.
I do however understand the cynicism from GlennS too. Believe me, I have more knowledge on this condition than the average person and it's incredibly complex.
Let me give you an example of one product a good few years ago.
TinniTool, now I know this is not in the same league as Neuromod but there was a study on its effectiveness and similar results were found by shining a light in the ear for a few months.
The placebo effect is very, very strong and measuring real tinnitus improvements is very difficult. That's why researchers needs to objectively be able to determine the level of tinnitus and you all know this is not possible.
I look forward to reading your work @PeterPan.
Thank you so much for your time and work on this project. As a member of Tinnitus Talk for several years, I for one truly appreciate it.
I have watched the Neuromod story since the beginning.
I agree with Hans but I also agree with GlennS too.
It may very well be the early days of neuromodulation and there are Susan Shore's and the Minnesota device following, along with Hubert Lim at Neuromod perhaps advancing this technology.
I do however understand the cynicism from GlennS too. Believe me, I have more knowledge on this condition than the average person and it's incredibly complex.
Let me give you an example of one product a good few years ago.
TinniTool, now I know this is not in the same league as Neuromod but there was a study on its effectiveness and similar results were found by shining a light in the ear for a few months.
The placebo effect is very, very strong and measuring real tinnitus improvements is very difficult. That's why researchers needs to objectively be able to determine the level of tinnitus and you all know this is not possible.
I look forward to reading your work @PeterPan.
- Jul 8, 2019
- 1,160
- Tinnitus Since
- 1991
- Cause of Tinnitus
- Loud Music / family history
Mmm. Juicy. I can't wait for a followup Tinnitus Talk interview with Neuromod. If I can't get my ears fixed I'll at least amuse myself with lurid corporate drama.
It looks like he is still there.
Chief Scientific Officer
Neuromod Devices
Sep 2017 – Present 2 years 9 months
Dublin, Ireland
But of interest it looks like he is also the Chief Scientific Officer at a Minneapolis company called Second Wave which states "SecondWave Systems is developing a novel, ultrasound-based wearable neuromodulation platform that will give patients and their physicians a new option for treating debilitating or life-threatening disease."
Are you sure? It seems he just has 2 jobs now. His job at Neuromod doesn't have an end date:
https://www.linkedin.com/in/hubert-lim-profile
- Jul 8, 2017
- 711
- Tinnitus Since
- 6/2017
- Cause of Tinnitus
- Neck/Jaw misalignment
How can he work for his competitors? That's like someone working for Coke and Pepsi. In my next life I'm going to get one of these fancy degrees and show no production.
Wasn't Hubert Lim working on the UMinn device? I doubt he's leaving the field of neuromodulation, just Neuromod maybe.Indeed, not a good sign...
Yes, but it's still strange that he's leaving two neuromodulation jobs in a row.
Why? Because he realized the devices were going to fail?
If Lenire is destined for success then why leave? Maybe he just got tired of the Irish gloomy weather? Who knows...
Maybe, but who should be held responsible? As learned through the Vimeo video, it was Lim's idea to change up the stimulation parameters at midpoint to drive more improvement. This impressed me when I watched the presentation but it seems to have backfired in the field. I don't recall reading a single report of the 2nd half of the treatment improving things. It either did nothing or even reversed previous gains. So I personally don't view him as a magical guru anymore.
- May 2, 2020
- 202
- Tinnitus Since
- 01/2019 T, 04/2020 H
- Cause of Tinnitus
- Headphones/Car Alarm/Immune Response?
Very true. So many stories on here talk about how the change had a negative effect.
Personally I will wait for drug treatments with well-understood effects. This neuromodulation business seems to be very risky.
We have to be lucid, the hair cell regenerating drug won't be on the market for at least 10 or 15 years minimum.
Neuromodulation could be a good alternative to relieve us while we wait for the medication, but indeed the side effects are not negligible; the most terrifying being trigeminal neuralgia.
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