Lenire — Bimodal Stimulation Treatment by Neuromod

[Allan1967]

If one has reactive tinnitus which reacts to white noise, and white noise is a component of sound therapy then I'm not surprised tinnitus can spike. None of the other users reported worsening.

That's not strictly true. Neuromod told me that nearly every other trial patient suffered an increase but everyone who did either improved OR it went back to baseline. Absolutely no one suffered permanent increase.

 

[Agrajag364]

At least no worsening.

Worsenings were described in the PowerPoint presentation of the data @annV posted, and they were also described in the video interview done with Neuromod. However in the video interview the Neuromod employee said "most" of those worsenings resolved. I transcribed what he said in the video:

"Have patients gotten worse? There were a small number of patients who have gotten worse, erm not dramatically, their tinnitus might have gotten, you know, elevated. These patients, they were asked whether they wanted to discontinue the treatment or continue, a lot of them continued. Eh, most of those cases then resolved, so we haven't had any serious adverse events in the study, and eh so we haven't had any very... just very, kind of, yeah well this term "serious adverse events", you know so there aren't any patients we're very very concerned about. And the majority of patients did actually, in patients that, some patients experience some change at the start which is probably to be expected at the start if you are doing something, if you are disrupting this kind of neural processes there is going to be change".



35 mins 50 secs.

 

[TinMan2019]

I'm about 2 weeks 4 days into my Lenire treatment.

My tinnitus was spiking for most of the first couple of weeks except a day here and there, but yesterday it was like it went away... well ok maybe to a 1 or 2... which to me is like it's gone!

It's back today but back to a normal 'pre-level' treatment. So that's a positive sign I guess!

Although I said a few pages back I wouldn't bother going back, given I'm in the USA and well it's expensive, I'm actually all booked up to return in October. In all honesty though I don't think it'll be for anything more than an audiogram and a quick 15 minute chat and to fill out one of their psychological questionnaires for their future use.

They also called me to see how things were going. I did mention that I had an increase and they said that was common among the trial participants.

 

[Mathew Gould]

I think it is.

I have reactive tinnitus too. What does your tinnitus sound like? Does any sound mask it? Does the tinnitus go way up when you hear sound?

 

[Fabrikat]

This technology stimulates the DCN through the trigeminal nerve. This is all very similar to what the University of Michigan and Minnesota are doing here in the United States. They are just using different delivery systems for the electrical stimulation (Michigan is using the neck and TMJ area and Minnesota is using the ear).

Which leads to my own theory that if one swapped the tonguetip and plugged in electrodes that attached to the back of the neck, it would be the equivalent of Susan Shore's device.

Timings should be the same.
It's just stimulating a different nerve. It'll take a game DIY hacker to test this theory though.

 

[ChrisBoyMonkey]

I'm about 2 weeks 4 days into my Lenire treatment.

My tinnitus was spiking for most of the first couple of weeks except a day here and there, but yesterday it was like it went away... well ok maybe to a 1 or 2... which to me is like it's gone!

It's back today but back to a normal 'pre-level' treatment. So that's a positive sign I guess!

Although I said a few pages back I wouldn't bother going back, given I'm in the USA and well it's expensive, I'm actually all booked up to return in October. In all honesty though I don't think it'll be for anything more than an audiogram and a quick 15 minute chat and to fill out one of their psychological questionnaires for their future use.

They also called me to see how things were going. I did mention that I had an increase and they said that was common among the trial participants.

Awesome news. That's gonna be where they change the settings.

 

[Chriscom]

Week 3 update:

My tinnitus is almost gone... I did have a worsening of my tinnitus around week 1 or so but it went away for me after 2-3 days.

Thanks for this report, and same goes to all who have reported and will do so going forward.

 

[foam]

Great to read about Lenire. Being someone that only got tinnitus 40 days ago I seemed to have picked a good moment in time to get it... Well it's been a rough 40 days but I couldn't imagine having it for 20 years with no treatment in the pipeline, although I guess it'll take years to arrive to Australia.

 

[valeri]

University of Michigan's device is based on similar technology, they made no warnings about "may cause short term increases!" and nowhere in their literature did I see this. The clinicians I spoke to about the experience of other subjects did not mention any such thing.

It's probably a bit too pretentious to even think that any tinnitus treatment will be a smooth sailing, for now at least!

Considering tinnitus complexity and that even what's on offer as treatment is still pretty much experimental and hit and miss, it's plain irresponsible not to count on possible worsening, temporary or permanent.

Personally I would be very suspicious of anyone telling me that my tinnitus DEFINITELY WON'T get worse from a treatment that is still in research phase.

By saying that I agree with you that anything making it worse is a reason for concern.

But we are still at least a decade away from anything that will hold absolute certainty when it comes to tinnitus! Until then we need to consider all possibilities!

 

[acute]

Week 3 update:

My tinnitus is almost gone.

It flairs a little from high volume white noise, like road noise when driving fast, but it's very temporary now and it's extremely mild; hardly annoying at all.

I've had a week of almost silence now and every day is minutely quieter than the day before.

The sound that is still there is barely audible and I only ever hear it when I listen for it.

A good headache or noise exposure, I have no doubt would bring it back for a while, but I've had neither this week.

I did have a worsening of my tinnitus around week 1 or so but it went away for me after 2-3 days.

A

Happy to read this.

 

[dayma]

Timings should be the same.
It's just stimulating a different nerve. It'll take a game DIY hacker to test this theory though.

I don't think anyone knows how the timing compares. Michigan published theirs at one point but I never saw Neuromod's or Minnesota's. The timing is the key to all of this and why the DYI stuff fails mostly.

 

[Chris809]

Happy to read this.

Same, and he also said he had very reactive tinnitus, which two of the testimonials had, so this should give us hope that if the device is set with the right sounds it should eventually desensitise our ears!

 

[Sytex75]

I know it's way too early to do a happy dance, but for those that are feeling some improvement this is one fella who across the pond is is giving two thumbs up. Hope it continues for you.

 

[Hanna2019]

Yes I was in the phase-I and if you dig through the UMich thread back to ~4 years ago when the trial was ongoing I had a lot to say.

The tl;dr of my experience is that I found it significantly helpful and look forward to this tech becoming accessible. That said it was not a cure and I definitely still had tinnitus during the peak effect (which was weeks 3 & 4 of the trial for me, it takes a couple weeks for the effect to start to become noticeable)

Can I ask what is the cause of your tinnitus? Is it nerve damage? TMJ? Not known?

I was thinking of doing the Shore trial which is a flight away on a weekly basis which is a lot as I don't live in the area and wanted to ask how helpful was it for you? And for how long did you need to come in?

Thank you so much.

 

[Fifth Business]

@Redknight hell yes!

 

[Simon Czt]

Do you think Lenire could also help people with pulsating tinnitus whose cause is unknown?

 

[AliceW]

I was talking with a researcher specialized in TTTS and hyperacusis in CNRS (Marseille, France):

He thinks that Lenire really can help TTTS, by its action on the trigeminal nerve ganglion, normalizing the inputs. That's probably why @Clare B and @kelpiemsp saw their sensitivity to sudden noises disappear as the tinnitus was improving.

He wants to measure my ears' reactions before and after Lenire treatment.

 

[GregCA]

Do you think Lenire could also help people with pulsating tinnitus whose cause is unknown?

I'd be surprised if it worked with PT, given PT's origins.

 

[Allan1967]

I have reactive tinnitus too. What does your tinnitus sound like? Does any sound mask it? Does the tinnitus go way up when you hear sound?

A high pitched ssssssszzzzzzzz.

Depending on what bastard of a mood it's in, some sounds can mask it. When I listen to Lenire it's like a gradual increase and it just stays with me for the day.

I'm hoping with the removal of the hiss/rain like effect I can commit to 2 x 30 minute sessions and start to see some improvements. I can handle the dum dum DUM dum DUM DUM dum DUM dum DUM piano & chirps.

 

[linearb]

Can I ask what is the cause of your tinnitus? Is it nerve damage? TMJ? Not known?

Primarily noise damage. History of severe childhood ear infections leading to scarring of the ear drum on the worse ear, though; also history of drug exposure.

I was thinking of doing the Shore trial which is a flight away on a weekly basis which is a lot as I don't live in the area and wanted to ask how helpful was it for you? And for how long did you need to come in?

Thank you so much.

I did it because I had a ton of disposable income at the time and it was a way to get out of the city I was in (which I hated) and treat myself to mini vacations to Ann Arbor to get treated, get hope for the future, and also just enjoy hanging out in a cool town as a (temporary) bachelor. I would fly in on a Thursday, be seen, stay through the next Tuesday, be seen again, then go home until the next Thursday and do it all again.

The frequency I was seen at may be different than the current trials (which I believe are longer?) and I also saw elsewhere in this thread that they are simply not accepting travel candidates at all at this point, but I do not know if that's true.

I'd say if you have the cash to burn and wanna see a relatively cool part of the country, do it -- and make sure to spend some time in Detroit! But, it's not going to fix you long term or do anything besides maybe shine a light on if tech like this will work for you once it is available.

I figure I spent about $10,000-12,000 doing the travel and everything else related; if I had been more budget conscious, maybe I could have done that for 5-6 (though I often stayed at an AirBnb that was only $35/night, and I didn't go too insane with fancy dinners or anything). For that cost, at this point, I think you could also probably just go get an appointment with Lenire, do your 4 visits in Ireland, and try that. I trust UMich's data more, but, with Lenire if it works for you, then you just have it.

So, what are you looking for? You wanna pay to be a lab rat to help the US tech be better, if and when it's available? Or do you want to buy a commercial product that's available now? Either of these things seem like low-five-digit investments.

 

[linearb]

Depending on what bastard of a mood it's in, some sounds can mask it. When I listen to Lenire it's like a gradual increase and it just stays with me for the day.

Have you tried listening to it without using the tongue piece? That would give you a pretty good idea if the spikes you're getting are purely noise related, or not.

 

[Mathew Gould]

A high pitched ssssssszzzzzzzz.

Depending on what bastard of a mood it's in, some sounds can mask it. When I listen to Lenire it's like a gradual increase and it just stays with me for the day.

I'm hoping with the removal of the hiss/rain like effect I can commit to 2 x 30 minute sessions and start to see some improvements. I can handle the dum dum DUM dum DUM DUM dum DUM dum DUM piano & chirps.

Some noises like rain or the shower mask mine, even white noise sort of... However the TV and my loud furnace make it louder or reactive.

 

[Redknight]

A high pitched ssssssszzzzzzzz.

Depending on what bastard of a mood it's in, some sounds can mask it. When I listen to Lenire it's like a gradual increase and it just stays with me for the day.

I'm hoping with the removal of the hiss/rain like effect I can commit to 2 x 30 minute sessions and start to see some improvements. I can handle the dum dum DUM dum DUM DUM dum DUM dum DUM piano & chirps.

Dum Dum DUM dum DUM sums it up well @Allan1967.

 

[ChrisBoyMonkey]

Dum Dum DUM dum DUM sums it up well @Allan1967.

South Park mormon music reference?

 

[Dizzyhead888]

I have an appointment on September 10th and I would gladly swap for that.

My appointment is September 13th.

Are you Irish citizen or traveling to Ireland like me?

 

[Redknight]

Have you tried listening to it without using the tongue piece? That would give you a pretty good idea if the spikes you're getting are purely noise related, or not.

You can't, it shuts off after 30 seconds.

 

[Krolo]

My appointment is September 13th.

Are you Irish citizen or traveling to Ireland like me?

I will be travelling in. Where are you travelling in from?

 

[ruud1boy]

I personally think it's the white noise hiss/rain effect which my tinnitus is reacting to. I'm told this can be removed.

That does make me question why the white noise / rain sounds are in there in the first place? If they can be removed, what are they supposed to be doing while they're in the mix?

 

[Phi]

You can't, it shuts off after 30 seconds.

Hi,

I noticed your positive post in the user experience thread. I'm glad to see you are getting relief. I will receive my device in November. Do you mind me asking how long you have had tinnitus and has it ever improved to this extent before you started using Lenire?

 

[PeterPan]

Hello,

It's PeterPan here again, the volunteer who is helping with the User Experience Group.
We (@Markku, @Hazel and I) had a strategy session yesterday, and also reviewed the progress to date.

To date we've had 177 sign-ups, with 33 confirmed appointment dates and all of these dates are prior to the end of the year. We will be publishing the results of the survey on Tinnitus Hub (in aggregate form, no personal information) 12 weeks after this which means around the end of March, 2020. 12 weeks is the duration of the treatment. We anticipate a sample size of about 30, which should be reasonable.

We're also getting some interesting information about pre-treatment Tinnitus and how it is correlated with various other parameters.

For example, to date we can see that the TFI score (the score used to assess the severity of tinnitus) is:

• TFI is strongly correlated with perceived loudness (as expected)
• TFI is negatively correlated with duration (as expected)
• TFI is negatively correlated with the extent of hearing loss (not expected!)

We only have a sample size of 13 completed initial surveys to date, but we should have a reasonable sample at the end of the year. At the end of the year (say in early January) we will publish this type of information.

If you have an appointment, but haven't signed up yet, it would he fantastic if you could as this will really help the tinnitus community. If you have signed up and given us a date, it would be a great help if you could do your surveys on time.