Lenire — Bimodal Stimulation Treatment by Neuromod

You have to keep reading. Here is the rest of the quote:

"Hearing ototoxicity from oral absorption of Neomycin has been reported (Rappaport et al, 1986) and there may also be toxicity from ear drops in patients with perforated ear drums."
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What you were quoting was not referring to your particular scenario (i.e. drops with no perforation). Ototoxicity from Neomycin via systemic absorption is scientifically established (although you'd have to have repeated dosage, as you mention in your quote).

Per research, it seems extremely unlikely that the drops you took, while your ear drums were intact, were ototoxic to you.

Why were you prescribed those drops? This could simply be a case of correlation vs causation.

 

My guess is it will take at least a year still before appearing in the US.

I really appreciate the fact some people are going in and trying this thing but given the results aren't living up to the hype (IMHO) it would be best to wait and see what the emerging dataset tells us--and also to see if Lenire actually improves the efficacy of the device in some way through tweaking parameters.

 

It may sound odd but the silence almost made me jump, I am so used to hearing the sound of tinnitus.

 

Unfortunately, nobody knows exactly when it's coming to the USA. All we know is that it's high on their priority list and something that they are working towards as much as possible.

 

I completely get that..

About three years ago I had some silence for the first time in three or so years following a Beach Boys outdoor concert of all things! It only lasted a couple of hours but was completely, incredibly overwhelmingly unbelievable!! I can still remember how astonished I felt to have some peace... was it some sort of residual inhibition? No idea... but I've never been able to replicate the effect, no matter how many Beach Boys songs I listen to unfortunately!! I think it does show our brain can still surprise us...

 

I did ask about this again at my appointment last week. They told me they are focusing all their efforts on getting the peer review papers published. I don't see a US release in the near future.

 

The sooner Lenire is available in the US, the better. Hopefully sooner and by that time we hear more promising results and it gives Neuromod time to Tweet, if necessary. God Bless Us All. Peace.

 

Hey guys, I appreciate the comments and suggestions I received a lot. I’m going to continue using the device for as long as I can in hopes of improvement.

At the end of the day, I guess it’s true that I don’t have much to lose, as I’ve already lost college and my job due to tinnitus. It’s been the hardest time of my life to say the least.

I wanted to add that I’m 99.9% sure that I have DCN tinnitus, because even when I slightly rest the back of my head on anything—wall, pillow, arm, my tinnitus elevates. Can anyone confirm or deny whether Lenire is supposed to work on DCN tinnitus?

Thanks again for all the support. Someone recently asked me if I had a strong support team and I immediately thought yes because I truly feel Tinnitus Talk has my back.

 

That’s a huge shame. It seems as if we’re completely behind on tinnitus research over here.

 

Wow, I have the exact same experience with resting my head! I wasn’t sure what to do with this information in respect to Dr. Shore—do I target the nerve in the neck, where I suspect this effect would be at play, or the nerve in my jaw that amplifies my (lower, not intrusive) pitched tinnitus when I yawn?


I’m thinking/hoping that any site we applied the electrodes(?) to, would result in T diminishing. Shore herself suspected that her device may help the noise-induced tinnitus community at large. Anything that would diminish the hyperactivity of the DCN, I would think, improve T in a lot of cases.

 

Appointment the day after tomorrow. Looking forward to it.

 

I'm amazed how eager people are who have appointments coming up.

I have one coming and I've got to say I'm less than enthusiastic. There is no feedback giving me a positive vibe, and I certainly don't need my tinnitus getting worse.

As things stand, due to having to pay for this device, I'm thinking of making a much later appointment, to see the peer review results first.

 

What’s the point in waiting to see other people's successes or not? No one responds to the same treatments. Everyone is different. You have to take any chance given to you.

 

Hello,

Just a short note to let you know where we are up to in the Lenire User Experience Group Study.

The Lenire User Experience Group is a group for people who have purchased or are purchasing the Lenire in the near future and wish to share their experience in an objective manner.

We are collecting data on participants' tinnitus experience prior to treatment and at the 6 and 12 week milestones with the objective of understanding if people are improving and if so, if the improvers share any common characteristics.

The cut-off for participants in the present study is end of January, but we will continue to collect data beyond this point and update the study results from time to time.

We presently we have 38 people who have started the survey, and have 4 more prior to end of January for a total of 42. If you are one of the last 4, please make sure you get your surveys in prior to end of January if you can!

At the end of April (12 weeks on from end of January) all the participants should have finished the 12 weeks of treatment and we will publish the results on efficacy.

We will also publish a report at the end of January describing the characteristics (in aggregate) of the characteristics of the participants at baseline (i.e. prior to starting the treatment).

I hope it will be useful (although I think most people will be interested in the end of April report).

PeterPan

 

I delayed my Lenire treatment plan. I paid up front but have no appointments scheduled until I decide to start.

I sought the treatment when I had a new sound and after several weeks off work and a terrible time we decided we had nothing to lose. In August my sound faded and tinnitus returned to baseline so I decided to leave it, a week after I got the machine and we were abroad.

Although my tinnitus was loud I could function again gradually and wasn’t going to risk aggravating and the other sound resurfacing. At that time I had read posts about new sounds or old one resurfacing with Lenire.

I have two kids who depend on me. My tinnitus goes though phases of loud, very loud and a few ok days. If the bad days become more frequent I’m going to have to make a call again. It’s clear to my that everyone’s tinnitus is reacting differently to the treatment so it’s a risk.

I was also confused as to what happened to the peer review publication etc...

I am doing CBT which I started this summer and it’s costing me a fortune. I feel like I walking a tight rope but I'm surviving. I can’t have any major crisis again for a while or it will affect my family and my job... (nearly had one two weeks ago).

It’s tough, today my ears are raging, my kid is off school with a tummy bug and it’s cold.

 

Thank you for your time and efforts with the survey. It's going to be interesting to see an independent patient perspective.

This question may have been asked before but I've not been able to find any reference to it; will the survey results account for, or reference, time since tinnitus onset?

 

For me the major point of waiting and reading experiences here is to see if anyone else gets permanently worse. I feel the risk of symptoms getting worse is understated in many clinical trials of various interventions, and for Lenire there is as yet no published - peer reviewed - clinical trial.

 

Frankly, for people more than a mild tinnitus like me, I couldn’t imagine the tinnitus getting any worse.

 

That’s where I am at exactly.

That being said in the past month or so I have really started approaching a new stage in habituation where even though I still hear it loud 24/7 over everything it is bothering me a lot less, just in time to start stirring the neural pot with my fresh out of the box Lenire.

At least I am used to it being severe, so how much worse can it get? Ha ha famous last words.

 

@AfroSnowman,

How much time has passed between your first appointment and the day you received the device? Thank you.

I wish you success with Lenire.

 

I am similar, had this crap for ages, all of a sudden it's sailing left and right. I just want it back to where it was before-I'll be fine. FML

 

Less than a week. I told them I was flying in from Indonesia, almost a 70-hour round trip and 2000 a ticket, and asked if there was anyway they could see me within a week's time span, so I could do it in a single go. They found a way to accommodate me. Thank God.

 

Some users described an increase of their tinnitus, could it be because the sound level of Lenire is too loud? I am wondering if the sound level is adjustable.

 

Yes definitely. You'll see all the questions we asked in the report at end of January.

 

Yes the sound level is adjustable. I suspect that the “disimprovement” is to do with the treatment as a whole rather than sound levels.

 

That is a scary thought that Lenire could be making tinnitus worse. I wonder if it would do the same for hyperacusis. I hope it just a situation where it needed to be adjusted to the proper setting. I hope this is not another device like TRT generators where success may rely heavily on clinician's expertise in setting up the devices.

 

What concerns me about the Lenire worsenings is that Dr. Shore's published research shows that the timing settings can either reduce or increase tinnitus. Her data shows that sound before shock stimulation by only 5 to 10 ms reduced tinnituz. The reverse settings of shock stimulation before sound by 5 to 10 ms increased tinnitus.

We don’t really know what settings Lenire is using because they have not published this data. For all we know they could be using settings that are borderline of making tinnitus better or worse. A couple milliseconds one way or the other between sound and shock stimulation could mean the difference of reducing tinnitus, no changes, or worsening tinnitus. Hard to say one way or the other but it certainly could explain the results we are seeing.

I am a firm believer in bimodal stimulation but am finding it hard to get past the worsenings of Lenire when the Dr. Shore trial did not have any. (To be fair the Dr. Shore trial only had 20 participants though.)

 

What modeling are any of these timings from? It all seems like guesswork.

 

I would imagine it's based mainly on the latency period between a sound being triggered and the body's perception of it. It's likely these figures change from person to person hence some flexibility in the treatment timing options available. A bit of trial and error it seems.

 

We do actually know this. It’s definitely in the leaked slides and possibly even in some of their papers.

From memory I believe that they found synchronised timings to be more effective, with delays being slightly more effective initially though ultimately not leading to long term effects.