Lenire — Bimodal Stimulation Treatment by Neuromod

[F-u-T]

A more likely reason is Neuromod just doesn't have as firm a grasp on the underlying science and methodology as they sound--especially given the track-record of their prior failure with MuteButton.

That would be mind boggling to me. Anyone can Google Dr Shore's research and know what timings they found to reduce tinnitus. Why in the world wouldn't Neuromod use the same timing that Shore has proven to reduce tinnitus? I think my guess of Patent protection is the likelier scenario. The whole point of patents is to protect intellectual property. Why would Shore publish her data years before her device is ready to hit the market if it wasn't protected by patent?

 

[mrbrightside614]

Anybody ever heard of MicroTransponder's Serenity?

Targets the Vagus, and instead of the tongue-tip, they use an implantable device (!invasive!)

31% reduction in THI isn't nothing though. Surprised I've never heard of this, ever.

https://www.microtransponder.com/en-gb/tinnitus/physicians/clinical-experiences

 

[Shelly75]

Neuromod has been guilty of opaqueness and doublespeak for some time now. They have created the perception among the public that the probability of statistically significant for anyone accepted for treatment is very high. But when asked, they have categorically refused to release any details other than things about hyperacusis sufferers being super-responders. * The closest to hard data we got was in a Vimeo video from a conference Hubert Lim did which was summarily smacked down by Neuromod. Then they gave all sorts of excuses for the lack of data:

a) peer review will take a long time... because muh data volume
b) data about those now using the device can't be released... because muh privacy

Despite that, they will gladly throw out exuberant numbers one-on-one when you're in the clinic to make sure you write the check.

If the public had nothing go by beyond their word that's one thing. But the user experience reports, limited in number as they may be, act as the verify part of trust but verify.

And how is that going?

Well, if nothing changes, then the conclusion in April will be that the trust can't be verified. There is a disconnect that needs to be explained.

Where should we go when that happens?

At the very least, Tinnitus Talk's data (and based on the preview, it's going to be really well done) should be brought over to them and they should be asked to answer for it in classic 60 minutes fashion. If they slam the door or give increasingly farcical answers then it will be pretty hard to hold onto that initial benefit-of-the-doubt trust.

* At least one (from memory) in the user experience thread reported he/she has hyperacusis but is not a super-responder.

I asked about the hyperacusis/super responder link in my last appointment and they said they are not seeing this being replicated in anywhere near the numbers they were in the trials since it's been rolled out.

 

[UHPTS]

There will be an improved Lenire II, but it's a completely different product that uses Minnesota timing instead of current timing.

Where did you get this information?

 

[threefirefour]

Where did you get this information?

I have some insider information, and it was mentioned in the Tinnitus Talk interview.

 

[Tybs]

Surprised I've never heard of this, ever

Same, had not read about it either. Apparently there already is a topic for it though.

 

[Shelly75]

I have some insider information, and it was mentioned in the Tinnitus Talk interview.

I wonder if they will upgrade us Lenire 1 users for free?

 

[UHPTS]

I have some insider information, and it was mentioned in the Tinnitus Talk interview.

Any idea when this should be done by Lenire?

 

[jmasterj]

I know someone else mentioned this earlier in the thread, but it now appears my Lenire device is having some weird feedback or Bluetooth dropping during treatment. I tried to re-pair the Bluetooth, but it didn't make any difference. The first six weeks it worked fine.

 

[GlennS]

Targets the Vagus,

When I first joined here vagus nerve stimulation (VNS) looked like the most promising treatment (there are threads about it) but the discussion got drowned out by these non-invasive devices.

It would be best to seek out those threads or start a new one because while it's similar it is still a distinct type of treatment with its own pros and cons. I have heard stories of things not going well for one reason or another and causing permanent nerve damage so it has its own risk-factors.

Anyone can Google Dr Shore's research and know what timings they found to reduce tinnitus.

The two treatments are not identical. The site of stimulation isn't the same and the audio stimulation isn't the same. I don't think Shore has documented the audio side of things enough for them to completely copy it. So it may not even be just about the timings. We just don't know. Also remember that Shore's trial sample size was very low and somewhat restrictive. For all we know if you subjected Neuromod's TENT-A2 group to her treatment the results may not have been much better. I know she's running new trials now but even there I don't think the total count of participants will come close to TENT-A2 so we may not know how well her device really works until after it's on the market and we're running our own Tinnitus Talk user experience report on that one. So, not to be a killjoy, but some of the shift in hope over to her device may not be justified in the end.

I asked about the hyperacusis/super responder link in my last appointment and they said they are not seeing this being replicated in anywhere near the numbers they were in the trials since it's been rolled out.

That's a welcome sign of candor.

 

[UKBloke]

I asked about the hyperacusis/super responder link in my last appointment and they said they are not seeing this being replicated in anywhere near the numbers they were in the trials since it's been rolled out.

This is very significant and something we need to keep an eye on.

 

[Ruse]

I asked about the hyperacusis/super responder link in my last appointment and they said they are not seeing this being replicated in anywhere near the numbers they were in the trials since it's been rolled out.

Dr. Hubert Lim also mentioned this in his leaked talk.

 

[threefirefour]

Dr. Hubert Lim also mentioned this in his leaked talk.

That I didn't see. I wonder why it doesn't replicate as well in the wild.

 

[El BUZZ]

Folks, my current situation is as follows:

For some reason my tinnitus has been worse for almost two months now. It had spiked before and it took even a month to resolve, but I think two months of it being extraordinarily loud is enough to consider it a permanent worsening. Thing is I have some good days in which it sounds at half its volume but those are really rare.

I have my first appointment next April 2nd. I am desperate enough to give it a try but also very scared to have the slightest worsening as I wouldn't be able to manage such a scenario.
My tinnitus sounds like an angle grinder, white noise, dental drill and glass rim being rubbed. Even the shower is starting not to drown it. Feeling really down.

I don't know what to do.

 

[EDDTEKK]

I am a severe case and decided to try Lenire.

So far no spikes, but no improvements either.

 

[pinklights98]

I know someone else mentioned this earlier in the thread, but it now appears my Lenire device is having some weird feedback or Bluetooth dropping during treatment. I tried to re-pair the Bluetooth, but it didn't make any difference. The first six weeks it worked fine.

Hi! I have this issue. Make sure you are away from any electronic devices that could be interfering with the device before you start. I go into a room away from my TV, my phone, my computer. But I've encountered this issue a lot, I think Lenire is particularly sensitive to interference.

 

[jmasterj]

Hi! I have this issue. Make sure you are away from any electronic devices that could be interfering with the device before you start. I go into a room away from my TV, my phone, my computer. But I've encountered this issue a lot, I think Lenire is particularly sensitive to interference.

The thing for me is that I do the treatment in pretty much that same location daily. The only variable would be that both the battery charge on the headphones and device may have been lower since I haven't charged it yet for the week. I did a treatment this morning and it was perfectly fine. I will keep monitoring and let Neuromod know next time I travel back.

 

[El BUZZ]

I am a severe case and decided to try Lenire.

So far no spikes, but no improvements either.

For how long have you been using it?

 

[alex1975]

Folks, my current situation is as follows:

For some reason my tinnitus has been worse for almost two months now. It had spiked before and it took even a month to resolve, but I think two months of it being extraordinarily loud is enough to consider it a permanent worsening. Thing is I have some good days in which it sounds at half its volume but those are really rare.

I have my first appointment next April 2nd. I am desperate enough to give it a try but also very scared to have the slightest worsening as I wouldn't be able to manage such a scenario.
My tinnitus sounds like an angle grinder, white noise, dental drill and glass rim being rubbed. Even the shower is starting not to drown it. Feeling really down.

I don't know what to do.

You can always email them and see if they have an earlier appointment? They were able to change mine fairly easily.

For your spike, have you gotten on any medication or perhaps changed medication? I know some have an effect on worsening tinnitus.

Sorry to hear about your spike. You're right about our tinnitus sounds sounding similar... What a sucky sound to be stuck with:-/

I listen to this track on bad days, it's the only one that can drown it out (maybe it can help you)



This one helps a bit as well but definitely not as effective:

 

[GlennS]

Hi! I have this issue. Make sure you are away from any electronic devices that could be interfering with the device before you start. I go into a room away from my TV, my phone, my computer. But I've encountered this issue a lot, I think Lenire is particularly sensitive to interference.

Assuming there is a Lenire 2.0 it should use wired headphones, period.

 

[Ruse]

Assuming there is a Lenire 2.0 it should use wired headphones, period.

But... but... Medtech?

 

[RCP1]

Dude, not the time.

Understood.

 

[El BUZZ]

You can always email them and see if they have an earlier appointment? They were able to change mine fairly easily.

For your spike, have you gotten on any medication or perhaps changed medication? I know some have an effect on worsening tinnitus.

Sorry to hear about your spike. You're right about our tinnitus sounds sounding similar... What a sucky sound to be stuck with:-/

Thanks a lot for your feedback and input. Can't trace any real reason which could have triggered this worsening. Prior to it I was able to function at work, meet friends, read books... I was somehow habituated and could keep moving forward despite the random spikes here and there. Now I am a complete mess. And again, can't afford any slightest worsening but at the same time Lenire is like a last resort as I am plagued with really dark thoughts and suicidal ideations.

 

[alex1975]

Thanks a lot for your feedback and input. Can't trace any real reason which could have triggered this worsening. Prior to it I was able to function at work, meet friends, read books... I was somehow habituated and could keep moving forward despite the random spikes here and there. Now I am a complete mess. And again, can't afford any slightest worsening but at the same time Lenire is like a last resort as I am plagued with really dark thoughts and suicidal ideations.

I went through a similar rough patch last year. I had a pretty nasty spike from August to about mid December. I think it was due to going to a concert with faulty ear plugs, but not entirely sure. My sleep pattern wasn't good at the time since I was traveling a lot so maybe it could have been that as well?

I went to the doctor's corner, here on the forum, with a few questions for the doc and one major thing that I changed, that the doc recommended, was sleeping with pink noise (sounds of rain on my ipad). It took me a bit to get used to cause my tinnitus was reactive to it, but I'm fairly confident it is what has helped my tinnitus. After a couple of weeks of doing that I started getting less bothered with it and have a lot less loud days and has only improved since then. Hope any of this might help if you haven't tried already.

 

[KyleM]

I had an appointment for Lenire but I decided to cancel it. Felt like way too much investment required for something I am not 100% sure would work. Financially speaking I just did not want to pay for all the trips, the device, the return trips, etc...

With the talk in here of a Lenire 2.0 I am glad I decided to pull the plug and wait.

 

[ChrisBoyMonkey]

Folks, my current situation is as follows:

For some reason my tinnitus has been worse for almost two months now. It had spiked before and it took even a month to resolve, but I think two months of it being extraordinarily loud is enough to consider it a permanent worsening. Thing is I have some good days in which it sounds at half its volume but those are really rare.

I have my first appointment next April 2nd. I am desperate enough to give it a try but also very scared to have the slightest worsening as I wouldn't be able to manage such a scenario.
My tinnitus sounds like an angle grinder, white noise, dental drill and glass rim being rubbed. Even the shower is starting not to drown it. Feeling really down.

I don't know what to do.

Your sounds like mine in terms of loudness. That damn OTO-313 drug permanently worsened the tinnitus so that it is about that loud, where pretty much only the shower masks it.

I've been using Lenire for about 4 weeks, at only 30 minutes a day. I feel like doing the hour makes it temporarily louder so I just do one session. What I've noticed so far is it helps tame it from spiking. Before starting the treatment it would randomly be spiked about every other day for no reason but not anymore since using it the last three weeks. It might be able to help you in that same way.

Of course, I plan to keep using it to see what more can it do for me.

 

[UKBloke]

@El BUZZ I've also been struggling recently with some nasty spikes that were getting really intrusive at times. At one point it was like six bad days followed by one OK'ish day. And then out of nowhere, everything settled down to a reasonable level again.

I've tried to understand what changed and to be honest it was staring me in the face. We've been moving house, and as much as I think I'm quite good at handling stressful situations, (I genuinely didn't "feel" stressed), it's become abundantly clear to me now that the move is complete that it was stressing me out no end (it was quite a complicated deal we had to complete). The stress was really negatively impacting my tinnitus.

I would hazard a guess and say that even if you've not got these kind of potentially stressful things going on in your life at the moment, the Lenire experience has become quite stressful for us sufferers. Everyone's on tenterhooks watching and waiting for the positive news to come in. There's the uncertainty with the mixed reports from the field, then there's all the travel arrangement etc for you guys that live far away from Ireland. I would say this in itself has all the potential to exacerbate tinnitus in some of us.

I'm not saying don't consider trying Lenire, but sometimes stress, which absolutely can and does spike tinnitus, can often originate from where we didn't at first think. Perhaps the anticipation of Lenire coupled with the mixed feedback has created a level of stress that it might be worth trying to give your mind a break from for a while to see if things settle down a bit. I hope you find some relief man.

 

[KyleM]

Of course, I plan to keep using it to see what more can it do for me.

I do hope it has a positive effect for you. I want you to know that your unfortunate sacrifice with OTO-313 may have saved my ass and I am forever grateful for the warning you gave. Also I love the new avatar.

I am really hopeful for Lenire and any treatment like it (such as Susan Shore's device). As soon as something is commercially available in the USA I think I would make the jump for it. Has there been any update on Lenire being available in America? Perhaps they are waiting for this rumored Lenire 2.0 now?

 

[threefirefour]

I had an appointment for Lenire but I decided to cancel it. Felt like way too much investment required for something I am not 100% sure would work. Financially speaking I just did not want to pay for all the trips, the device, the return trips, etc...

With the talk in here of a Lenire 2.0 I am glad I decided to pull the plug and wait.

I'm glad you made your choice but Lenire 2.0 is expected to release in 2027.

Consider better alternatives to Lenire 1.0 releasing earlier.

 

[KyleM]

Consider better alternatives to Lenire 1.0 releasing earlier.

Hey I'm all ears (pun intended) for accessible treatments. Like I said in the previous post the main thing holding me back is the financial investment required for the consistent travel. Has there been any news about Lenire making it to America?

As for Lenire 2.0 not being out until 2027, at least it's something to look forward to!