I am very disappointed with the latest updates of Lenire's User Experiences thread. Several users have completed their 12 weeks and nothing has changed for them. Even those who seemed to notice improvement in the beginning of the treatment. What a shit.
Lenire — Bimodal Stimulation Treatment by Neuromod
- Thread starter Tinnitus Talk
- Start date
Member- Feb 11, 2019
- 801
- Tinnitus Since
- 01/2014
- Cause of Tinnitus
- Headcold/Flu
To acute:
Thanks for such a blunt, unadorned, honest assessment.
Let's wait to see if further, conclusive reports yield the same results.
Thanks for such a blunt, unadorned, honest assessment.
Let's wait to see if further, conclusive reports yield the same results.
- Jul 17, 2019
- 87
- Tinnitus Since
- 2017
- Cause of Tinnitus
- Idiopathic/Bad shoes?
Goodness almighty. It really doesn't take much for the hysteria to start, does it?
Guys WAIT. Have some patience. Wait until we have 30, 40, 50 reviews before throwing in the towel. Less than a handful of reviews past the 12 week mark and people are losing their minds.
If we get well into the double digits of reviews and Lenire is still coming up with little to no effect then we can talk in a different context.
Although I understand why people are disappointed at reading @BigNick's review and even the man himself being disappointed is understandable. I can honestly take some positives from it. If Neuromod told me that I could be rid of my tinnitus spikes and spasms for €2,000 right now I'd throw the money at them and not look back. It may not be worth it for someone with a severe THI and MML but we already knew that.
Guys WAIT. Have some patience. Wait until we have 30, 40, 50 reviews before throwing in the towel. Less than a handful of reviews past the 12 week mark and people are losing their minds.
If we get well into the double digits of reviews and Lenire is still coming up with little to no effect then we can talk in a different context.
Although I understand why people are disappointed at reading @BigNick's review and even the man himself being disappointed is understandable. I can honestly take some positives from it. If Neuromod told me that I could be rid of my tinnitus spikes and spasms for €2,000 right now I'd throw the money at them and not look back. It may not be worth it for someone with a severe THI and MML but we already knew that.
- May 22, 2019
- 257
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- NIHL & TMJ
So far I count:
No effect: Cojack, ruud1boy
Some effect: BigNick, patient with 10 dB reduction who AliceW met, RedKnight
Unfortunately 2-3 people who reported a good start seem to have dropped off the map. I tried reaching out to DrCross on Reddit and haven't heard anything back.
I'm still optimistic that a good portion of people will get something out of this, though I don't expect the hundreds of 'life changing' reviews to be rolling in anytime soon.
No effect: Cojack, ruud1boy
Some effect: BigNick, patient with 10 dB reduction who AliceW met, RedKnight
Unfortunately 2-3 people who reported a good start seem to have dropped off the map. I tried reaching out to DrCross on Reddit and haven't heard anything back.
I'm still optimistic that a good portion of people will get something out of this, though I don't expect the hundreds of 'life changing' reviews to be rolling in anytime soon.
I've had a really good day today, so don't write it off just yet. I have had some very good periods during the treatment where my tinnitus dropped very low, but like I said it kept coming back.
I saw a different audiologist yesterday and she did give me a bit of hope because she said it sounds like something's happening and she's right, but I was very down as I really thought early on I was going to be totally cured.
I'm back on the original set up which is what I wanted and Jay is also right in that my spikes / spasms have gone away and that is reason to be pleased. So keep the faith, there's still hope X
I saw a different audiologist yesterday and she did give me a bit of hope because she said it sounds like something's happening and she's right, but I was very down as I really thought early on I was going to be totally cured.
I'm back on the original set up which is what I wanted and Jay is also right in that my spikes / spasms have gone away and that is reason to be pleased. So keep the faith, there's still hope X
It would be nice to think that the data would emerge in such a way that everyone sort of comes to the same conclusion, but it rarely works out that way. There's just a breakdown of sentiment pro and con that gradually tilts over. Point being that even after your scenario above comes true there is likely to be a few diehards still just as optimistic as the day the thing came out. And usually what happens is those diehards get more and more combative once they realize they're a dwindling minority. We're already starting to see the tone get a bit testy lately even at this early stage.
The other thing is that any treatment where the benefits fall within the gray zone of placebo is going to only further encourage evangelists to attribute even the mildest perception of improvement to the device rather than everyday variation and subjective assessment. It's this phenomenon that is exactly why Desyncra type devices managed to get sold and continue to sell to this day, or your various herbal remedies, your Ring Ease and whatnot. People misattribute cause and effect all the time.
This is exactly why I shrugged off what some here classify as positive testimonials to placebo. They may not be placebo but the effect is so mild that there's no way to determine it conclusively, and so I can't really latch onto such ho hum reports as a validation of Lenire, just as the video testimonials from back in the day were oddly underwhelming. We need more definitive testimonials where people using it can say with no ambiguity that their tinnitus got noticeably better and stayed better. And by better I am not saying it has to be gone completely. There's a wide range in the middle where it's better than placebo but not a complete cure.
"Guys WAIT. Have some patience. Wait until we have 30, 40, 50 reviews before throwing in the towel. Less than a handful of reviews past the 12 week mark and people are losing their minds."
(6 weeks from now)
"Guys WAIT. Have some patience. Wait until we have 50, 60, 70 reviews before throwing in the towel. Less than a handful of reviews past the 18 week mark and people are losing their minds."
(12 weeks from now)
"Guys WAIT. Have some patience. Wait until we have 70, 80, 90 reviews before throwing in the towel. Less than a handful of reviews past the 24 week mark and people are losing their minds.
(1 year from now)
"Guys WAIT. Have some patience. Wait until we have 300, 310, 320 reviews before throwing in the towel. Less than a handful of reviews past the 64 week mark and people are losing their minds."
Okay, we have like what, 10 people reporting regularly on here? Even if we had 30 people, that is still small relative to the proportion of tinnitus sufferers, but it would be 3x more reliable than the sample size of 10. See where I'm going here?
If you've ever taken a basic statistics class, you would know that our sample size is pretty insignificant, to the point that it nearly has no reliability. Good reviews, bad reviews, it's still too small of a sample. I always saw it as a courtesy that the users are letting us know how it is going for them. Obviously they're not obligated to anyone to report anything.
When we have that overall user experience data that is being collected on this forum available to us, the ones that don't report on the threads but fill out the surveys, then we will have a better data set to work with. Maybe still not a great one, but it will surely be more reliable. I'm thankful we have that going on, and don't get me wrong, I really appreciate when the users take the time to write about their experience on the threads for us to see.
I want to find more people's reviews, I've tried googling and checking on other sites and social media apps that might have info, but sadly I could only find a few users that we already have posting here, so no new "n"s (statistics variable for total subjects / sample size) to consider. I'll probably be in the next wave for invites, but I'm also pretty frugal about my money (especially at this time) and don't want to go through the trouble of getting this treatment if it's not going to be of any help. All I can say right now is that it's too soon to make a definitive call, especially if the 12 weeks alone are not exactly a limit to seeing benefits.
Like most of here, I'm in a position where I can wait and see (for a more reliable data set) before committing as I still don't know when my appointment would be, just like everyone else waiting on the list.
Hi Krolo,
That's exactly what we're doing as part of the analysis of the Lenire User Experience Survey results!
PeterPan
- Jul 8, 2019
- 1,148
- Tinnitus Since
- 1991
- Cause of Tinnitus
- Loud Music / family history
@BigNick thanks for posting this. It might be an obvious question to ask but, when the audiologist said it sounds like something's happening, was her remark based on your own account of the current situation, or does she also have some additional data to go on?
All my optimism has dissolved, my gut feeling from the testimonial videos has proven probably realistic.
It's a case of if something looks too good to be true it's unlikely to happen. Here we are. Maybe in a year some hope may come out of this thing, hurry up Dr. Shore. I'm half optimistic with her device.
It's a case of if something looks too good to be true it's unlikely to happen. Here we are. Maybe in a year some hope may come out of this thing, hurry up Dr. Shore. I'm half optimistic with her device.
- Jun 18, 2019
- 294
- Tinnitus Since
- 05/24/2019
- Cause of Tinnitus
- Chronic headphones use and acute noise induced trauma.
I'm sure you will have improvements continuing the treatment.
When you say that your tinnitus spikes and ear spasms stopped, what does is it mean really?
Before Lenire, you had your tinnitus spiking to some external noises? And how were your ear spasms exactly? On the eardrum? All the time? In response to some sounds? In both ears?
Thanks for your answer
Well it was obvious to her I was pretty down but as the conversation went on I mentioned some of the things that had happened along the way, like it dropping to almost silent on more than one occasion (that never happened before). She said well something's happening in your brain and it takes a long time to re-train the brain, so keep going etc. That kind of cheered me up a bit.
There wasn't any data but she said Caroline's opinion was that patients will improve if they keep going.
Agreed. Just reading the latest Experiences.
Doesn't look really promising.
So now waiting another 1-2 years for the device from Dr. Susan Shore?
Or hoping that some other patients using Lenire report success. But they seem to be not on Tinnitus Talk...
- Feb 11, 2019
- 801
- Tinnitus Since
- 01/2014
- Cause of Tinnitus
- Headcold/Flu
To Bndsmheowque:
That's exactly how I conned myself about Desyncra until so much time elapsed that I finally had to relinquish any belief in its effectiveness.
That's exactly how I conned myself about Desyncra until so much time elapsed that I finally had to relinquish any belief in its effectiveness.
"If you've ever taken a basic statistics class, you would know that our sample size is pretty insignificant, to the point that it nearly has no reliability."
Denial is a hell of a drug.
I used to get random spikes for no reason, so intensity would hit another level, that was very distressing, then after a few hours it would drop off. All of that has completely stopped now. My ear spasms were a thumping sensation that would sometimes last the whole day, it would spasm 30-40 consecutive times, stop for a few seconds, the start again, that has almost stopped completely, but I get the odd day with very mild ear spasms. When I first got tinnitus they would react to music and certain sounds, cutlery etc.I'm sure you will have improvements continuing the treatment.
When you say that your tinnitus spikes and ear spasms stopped, what does is it mean really?
Before Lenire, you had your tinnitus spiking to some external noises? And how were your ear spasms exactly? On the eardrum? All the time? In response to some sounds? In both ears?
Thanks for your answer
Despite, these improvements I'm still very, very depressed, so my THI score is unchanged.
I don't regret spending the money etc. I just hoped for more by now, maybe I'll have a happy ending, it's not over yet X
- Aug 3, 2019
- 30
- Tinnitus Since
- 1/1/15
- Cause of Tinnitus
- Working aircraft on tarmacs
The dose of reality that we all need to see are the results that Neuromod will post of a lot more people that have bought and used Lenire.
Our survey here is limited to say the least but still useful for some to decide if they want to give it a try, but in reality I think we all have our own number of people that we consider significant in terms of making a decision on its effectiveness... And obviously we all have to be realistic with both the amount of time and number of people that have used Lenire.
Our survey here is limited to say the least but still useful for some to decide if they want to give it a try, but in reality I think we all have our own number of people that we consider significant in terms of making a decision on its effectiveness... And obviously we all have to be realistic with both the amount of time and number of people that have used Lenire.
My £3000 is staying in my pocket. I have to have more than desperation and hope, I want to see evidence on these forums.
When are TENT-A2 results released?
With moderate hearing loss and bad tinnitus you just get to a point where you are stuck with this shit life; the light at the end of the tunnel is very dim.
When are TENT-A2 results released?
With moderate hearing loss and bad tinnitus you just get to a point where you are stuck with this shit life; the light at the end of the tunnel is very dim.
Judging by that response, it looks like you haven't.
I'm not rooting or booing for this. I'm waiting and seeing. Chill out. Resorting to call me some sort of "deniar" so quickly. Pitiful.
Are you guys accounting for age?
I'm very curious about this one. I don't have much to work with but I think I'm seeing a tendency.
- Jul 8, 2019
- 1,148
- Tinnitus Since
- 1991
- Cause of Tinnitus
- Loud Music / family history
Dropping down to almost silent on more than one occasion seems very encouraging. Do you take or have you thought about taking any supplements to compliment the treatment? This, Curcumin as an anti-inflammatory thing, has really tweaked my interest. Anyhow's, good luck going forward; I'm rooting for you.
- Dec 7, 2018
- 554
- Tinnitus Since
- 03/2018
- Cause of Tinnitus
- Unknown
Sorry to hear that it didn't go as well as expected. What is your THI score if you don't mind me asking?
Even if you take the small sample size into account, the results aren't encouraging at present.
If an uptick in testimonials is to happen either due to the device taking longer to have an effect or seeing more people participate in the user reports, I don't think it should take much longer to manifest. If we're in this same exact position in another 3-6 months it's just going to be literally impossible to reconcile against Neuromod's statistics. And if we get to that point then...
They've already recorded a recent interview for Tinnitus Talk, right? We need to see that interview, STAT.
Ditto. I got a tip that Reddit has some chatter. I see you and some other Tinnitus Talk members have been there too. I checked it out and found only one person not on Tinnitus Talk who reported mild improvement (of which I classify as in range of placebo).
JohnK
Member
- Nov 10, 2015
- 311
- Tinnitus Since
- 10/26/2015 (habituated) 5/13/2019
- Cause of Tinnitus
- Doxycycline (2015) Otimize ear drops [neomycin] (2019)
Director- Oct 24, 2017
- 848
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- one-sided hearing loss (of unknown origin)
The interview will be released to our Tinnitus Talk Podcast Patreons (including yourself, thanks for your support!) very likely this weekend, pending just us adding a little intro and outro to it. You'll get a notification email from Patreon once it's up.
For those who didn't want to support our work with $2 or more, we'll make it available about a week or so later.
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