Lenire — Bimodal Stimulation Treatment by Neuromod
- Thread starter Tinnitus Talk
- Start date
I was eagerly awaiting the new Lenire clinic in Germany. It would still have been an 8 hour drive one way, but if it had helped, it would have been worth it.
These negative reports of minimal response or even worsening makes me think if I should even bother trying.
These negative reports of minimal response or even worsening makes me think if I should even bother trying.
El BUZZ
Member
Member
- Dec 31, 2017
- 204
- Tinnitus Since
- Mild since 2006. Severe since 2016
- Cause of Tinnitus
- An enthusiastic youth
A really minor ray of hope - I had a really good day yesterday. Better than my 'usual' pre-Neuromod good days. I'd been at work for 2 hours and I suddenly realised I hadn't noticed / heard / thought about my tinnitus for that 2 hours. As soon as I thought that, I could hear it, but it continued to behave itself for the rest of the day. Hope springs eternal.
According to the CEO Dr. Ross O'Neill, Lenire targets several parts of the brain that are responsible for tinnitus. He couldn't get into details though. Dr. Susan Shore's device only targets the DCN.
In a nutshell, I have the impression that Lenire randomly affects different areas in the brain, maybe this is why results are so random.
In a nutshell, I have the impression that Lenire randomly affects different areas in the brain, maybe this is why results are so random.
I'm also scared but I want to try Lenire.
If you want to cancel your appointment, can you please tell Grace to give it to me because your date is earlier? Mine is the 20th of December to pick up the device... so long
According to their interview, it's because the brain adapts to it early on and it loses effectiveness. I think they should let the effectiveness run its course rather than change it every 6 weeks IMO.
- Jul 8, 2019
- 1,162
- Tinnitus Since
- 1991
- Cause of Tinnitus
- Loud Music / family history
Brain-hacking is a risky thing. I would want to know the people behind a device like this really have a firm grasp of cause and effect before I hook myself up to something like this. Leave it to trial participants to take the hit on completely "random" results.
- May 22, 2019
- 257
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- NIHL & TMJ
Let's hope this is the start of some change! Please let us know how this goes over the next few weeks either way.
I remember that someone who was involved in the University of Minnesota trial experienced positive results after the end of the trial. His loud tinnitus improved slowly after the trial and eventually faded out.
Yeah but that's not this. Neuromod targets fusiform cells in the auditory track. The Sonic Labs device targets the inferior colliculus.
I think Clare B - who was in the Neuromod trial - wasn't actually sure if she had improval until after the end of the treatment when it began to improve. Would be interesting to hear how you get on. It can be so hard to tell what this condition is doing sometimes if you're one of the people for whom it naturally fluctuates.
- Apr 25, 2019
- 78
- Tinnitus Since
- 04/2019
- Cause of Tinnitus
- don't know, probably motorsport + headphones for last years
Well, If this was the case, then from where do they have such figures used in the PowerPoint?
Attachments
Did you pick up a Lenire yet? I read in one of your past posts you planned to.
I've been looking over the first Lenire user reviews on Tinnitus Talk, and looking through this thread for how people who have tried Lenire feel about it. The results are underwhelming for sure, but I think it's mostly been more success than non-success. So I did some statistics based on site reviews, and another chart with anecdotes from these reviewers, and some on r/tinnitus but not on Tinnitus Talk. I divided the subject pool into 4 parts:
-Worsening: Tinnitus has worsened, probably as a result of Lenire.
-Not Improved: Subject didn't experience any definitive improvement from Lenire.
-Improved: Subject experienced some improvement. Whether it be less tinnitus variance, softer tones, less volume, etc.
-Great: Subject had great improvement as a result of Lenire.
Using these categories, here's what I got using reviews from Tinnitus Talk users only:
Using anecdotes from Lenire users, and another user on r/tinnitus, I can add 4 more improvements. I haven't found a second hand experience talked about where the person didn't improve, but maybe that's because the Lenire users don't want to discourage others. So if you're a Lenire user who talked to another one in the lobby who didn't experience an improvement, feel free to reply telling me about it.
Graph with anecdotes:
Not exactly rigorous but that's what I got so far. Lenire says they had a clinically significant improvement rate of 66%, and statistically significant improvement rate of 80%. As we add more data we climb closer to the 66% rate. Now why this number isn't reflected on Tinnitus Talk is probably for one of three reasons:
-We got statistically unlucky, and many who don't improve just happen to be Tinnitus Talk users, over representing the unlucky pool.
-Lenire doesn't work as well as Neuromod claims it does.
-There's another reason. Maybe people who use Tinnitus Talk are more likely to have loud invasive tinnitus, meaning they don't experience as much of a reduction as a moderate sufferer would. Also there's a lot of hearing loss on here, and the better your hearing, the more likely Lenire will help you.
-Worsening: Tinnitus has worsened, probably as a result of Lenire.
-Not Improved: Subject didn't experience any definitive improvement from Lenire.
-Improved: Subject experienced some improvement. Whether it be less tinnitus variance, softer tones, less volume, etc.
-Great: Subject had great improvement as a result of Lenire.
Using these categories, here's what I got using reviews from Tinnitus Talk users only:
Using anecdotes from Lenire users, and another user on r/tinnitus, I can add 4 more improvements. I haven't found a second hand experience talked about where the person didn't improve, but maybe that's because the Lenire users don't want to discourage others. So if you're a Lenire user who talked to another one in the lobby who didn't experience an improvement, feel free to reply telling me about it.
Graph with anecdotes:
Not exactly rigorous but that's what I got so far. Lenire says they had a clinically significant improvement rate of 66%, and statistically significant improvement rate of 80%. As we add more data we climb closer to the 66% rate. Now why this number isn't reflected on Tinnitus Talk is probably for one of three reasons:
-We got statistically unlucky, and many who don't improve just happen to be Tinnitus Talk users, over representing the unlucky pool.
-Lenire doesn't work as well as Neuromod claims it does.
-There's another reason. Maybe people who use Tinnitus Talk are more likely to have loud invasive tinnitus, meaning they don't experience as much of a reduction as a moderate sufferer would. Also there's a lot of hearing loss on here, and the better your hearing, the more likely Lenire will help you.
Thanks very much for that @threefirefour.
Off topic, but your tinnitus disappeared didn't it? What did you do to make that happen if anything? I don't think we ever heard your success story.
Great job putting this together!
Let's hope the data keeps looking in line with Neuromod's claims as we add more to it.
As I've been saying, the sample size is still very small, but it's nice too know you found some more subjects to add. For what it's worth, it's still better to at least have some idea of effectiveness as we go instead of just being blinded completely until we have a larger sample size, people have appointments coming up. This data is most valuable in helping them make the decision.
It didn't disappear completely, just near completely. I got a mouthbrace and began wearing it at night. My teeth and jaw are still misaligned and I actually had a small spike a while ago because my tooth crown fell out on my molar and chewing made my jaw hurt but overall this is definitely behind me.
I was planning on making my success story "the success of the whole community" once Lenire released, but I want to wait to see if it's any good before I do that.
I believe it was said somewhere in this thread that it's because of diminishing returns. You somehow habituate to the program.
- May 22, 2019
- 257
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- NIHL & TMJ
For those who weren't existing Tinnitus Talk members prior to treatment I question whether one is more likely to create an account to leave a review if they have had a negative experience, rather than say a positive one in which they would simply 'get on with life'.
- May 22, 2019
- 257
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- NIHL & TMJ
You're back on the timings which had an initial effect on you correct?
Let's hope this is having a compounded effect here!
That's what most people do review wise, tinnitus or not. It's the bad experiences that more often make people really want to talk about it. That's probably what's happening here too.
Especially with tinnitus, something that can be so horrifying and traumatizing, I'm not gonna blame anyone that takes off if they get better in any way, Lenire or not. The ones that stick around for support anyways are like heroes.
That could be true. A few of those positive experiences that were on the thread like Lucky97 weren't mentioned on the Lenire User Experiences thread. Him and Liz Winzor were asked on this thread how they were doing and they said they felt an improvement. There was also Clearance but I did not add her to the data set because I want to examine her case a bit more.
Basically, it's likely some of the repliers were having a bad day and were reminded of their tinnitus, and thought to themselves "Oh yeah, I should update Tinnitus Talk how I'm doing, and today was a bad day". But maybe the opposite is true and users having a good day though "Wow today is great, no tinnitus, I'm going to tell Tinnitus Talk". So you know, there's lies, damned lies, and statistics.
That goes without saying.
But even among the users that were already on here we should be seeing a similar trend. If you look at the user reviews, it's a closed system with neither positive nor negative comments coming from outsiders. Just about everyone who has undergone treatment was on this forum before. We should still see similar numbers once we get a large enough user group.
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