Lenire — Bimodal Stimulation Treatment by Neuromod

Good point and it's worrying there are only two data points at baseline THI 90. That could mean a lot of severe cases dropped out before completion due to worsening.

 

Quite possibly. I can't even begin to imagine what temporary worsening would be for those with a THI score of 90. Poor souls.

 

FAO Neuromod:

Just a thought...

 

I can’t think of anyone that has had any improvement on Lenire’s second six week setting. Am I wrong and if so, does anyone have any stats on how many people have had any improvement?

 

Apart from being indecisive about trying Lenire, AFAIK, Hannover facility has not contacted anyone beyond those generic "be patient" emails.

I was added to their waiting list early December and it's now March.

It would also be great if they were upfront about the total cost of the treatment.

 

I was also advised to take a five day break from Lenire. I am going through a spike and the audiologist thought that Lenire may be over-stimulating my auditory system and preventing the spike from calming down.

This is interesting because I thought that Lenire would perhaps soothe spikes by calming the DCN.

 

Hello @Clearance,

Are you still on Tinnitus Talk? You have not posted at any point in the last two months. I do not want to hound you, but I'm having a doggone hard time adjusting to my noise induced tinnitus (crummy pun).

First of all, how is your tinnitus level now? Is it lower? Is it gone? Did Lenire work a third time?

I really hope it did for both our sakes because I express some strong interest in undergoing the process itself. Although I do not live in Ireland, I would be willing to travel to the country JUST to get some relief!

Thanks so much,
Douglas

 

Honestly, from what I've seen in the User Experiences thread, if I decide to go for Lenire (still waiting, although the new sound that popped up in my formerly good ear three weeks ago isn't helping with patience), if the first settings help, I might make up an excuse to avoid changing to the second programming in six weeks. It seems to have every single person who's had improvement worsen and right now it kinda looks like Neuromod are just changing the timings up throwing shit at the wall and seeing what sticks. I'm not paying for another plane trip/AirBnB just to have it worsen and then do it again to go back to the first round of timings.

 

This is the same advice I'd give to my younger self. If you react during the first 6 weeks just keep going. There is value in returning to Neuromod after 12 weeks, at least to get a MML reading, but I think we can do very well without the 6-week checkup. At least until they put some proper data behind the choice of second timing instead of just blind trial and error.

 

And the worst part about this is that changing up the profile was Hubert Lim's idea. He is supposed to be the "expert".

 

Where did you find that info?

 

Anyone knows if the clinical trials with the testimonials, especially with Patricia, included this stimulation change at week 6 or was it without? She said her tinnitus was gone after about 2 months, but was that with the updated settings or with the original ones?

Maybe @threefirefour has a good overview? Thanks!

 

Hi folks,

My name is Doug and I have been dealing with tinnitus caused by a loud concert mixed with severe wax buildup for about five months now. An ENT took good care of the wax buildup long ago, but the noise induced tinnitus remains. The volume has dropped off substantially, to the point where I can only hear it in quiet rooms (I got there in about 0.5-1 week tops). Over the last five months, the tinnitus has gone from being about as loud as a jet engine to being about as quiet as a loud, (yet annoying) mosquito.

I understand that some users report meaningful improvement in the volume of their tinnitus, while some users such as Clare B, Clearance, and Kelpiemsp have had their tinnitus eliminated using Lenire's technology.

My tinnitus has gotten more maskable, and I have no hyperacusis or hearing loss of in any amount of measurable decibels. My hope is that since my onset is recent; and the volume seems to have plateaued at the last 5-10%, that neuromodulation would be the final kick that would send the last of it away for good.

I know that travel and treatment would be kinda, expensive for me (I live in the us). But, I would be willing to fork over the money for this, rather than wait a year or two for Dr. Susan Shore's patients to come through [and my recent onset advantage, (if such a thing exists) to go away].

Thanks,
Douglas

 

It was in the now deleted but infamous Vimeo video of Lim's convention presentation.

 

Mate, if you can only hear it in quiet rooms already, you’ve got a great chance of it fading to insignificant or going over time. If it was me I would not risk a possible worsening with Lenire.

The only counterpoint is people with new onset tinnitus seem more likely to have Lenire improval, but that might be coincidental.

 

Agrajag364: I have an appointment with Neuromod currently made for late May, early June. If it goes away by then, I'll just cancel the appointment. That being said, I don't think that I'm one of those people who's tough enough to habituate.

 

You will, especially if it’s mild...

 

I had loud tinnitus that dropped in volume. In my experience and from years of talking to tinnitus sufferers, I think if it's remained at that level for 5 months then it is as good as it gets and you won't get any improvement by doing nothing.

That being said, habituation does happen for low and moderate cases.

The good news is that companies are trying hard to get an effective treatment out there because there is a tonne of demand for it.

 

I have watched new tinnitus treatments get hyped, come and go over the years.

I am struggling to be as enthusiastic as I was with Lenire.

I was expecting way better results. I take mild improvements as placebo. If you read about placebo, you'll see how truly effective it is.

But then on the other hand, I feel I owe it to myself to get treatment. I have always been a 'solutions' person, not a put up and shut up.

Hubert Lim will have to try harder to get my y fronts in the post.

 

Hi Paulmanlike,

Forgive me for correcting someone more knowledgeable on this topic, but "...I think if it's remained at that level for 5 months then it is as good as it gets and you won't get any improvement doing nothing" doesn't necessarily describe my scenario. I am not saying that I have been at the mosquito stage for five months, I am saying that I have gone from the jet engine stage TO the mosquito stage IN five months. If I had a five month long plateau at the mosquito stage, that would be one thing. But rather, I have had a five month long drop off from point a to point b.

Additionally, I want to ask you about what you mean when you use the word habituation.
1. If, by habituation, you mean get used to the ringing and let it fade into the background, then I do not think that I could do that.
2. But, if by habituation, you mean always have a masker in a quiet room and then just get back to living my life, then I could probably do that.
3. Lastly, are you yourself "habituated"?
4. I feel like, for the sake of everybody suffering from tinnitus, I kind of owe it to them to go to Neuromod just so that they learn what happens to me. In your opinion, should I bother going?
4.5 I have heard of some cases where people habituate and then it goes away after they've habituated. Could that possibly happen to me?

 

Hi realdougconnolly.

I thought it had remained at mosquito stage for some time. I had a debate with somebody who told me long lasting tinnitus always fades very, very slowly. I disagree with this from my own experience and speaking with many tinnitus 'veterans' over the years. I believe tinnitus lasting longer than 3 months will mostly be permanent unless an underlying cause can be found, which in many cases it can't. The most common cause of tinnitus is noise induced. There are however some cases like yours on a couple of threads where uncommon cases have faded over a long period of time, but in my opinion it's uncommon. That's just my opinion though and I have read countless things on tinnitus and spoke with many sufferers.

1.) You are new to tinnitus. Many newbies come here and I will put it like this. When I had depression I was told I won't feel this way forever. I didn't believe them. But I got better. Same as tinnitus.

2.) You have a mild case of tinnitus where it's only audible in a quiet room. The need for a masker is to hide the noise. Why is that? It's because of the emotions you feel when you hear the noise - negative thinking. I am sitting in a quiet room now and I can hear mine, but the emotions I have felt with the noise in the past were very negative. Now, the noise is something that is just there. I have no emotion to the ringing (apart from occasional moments)

3.) I am mostly habituated. I don't have to sleep with a masker anymore. I don't obsess over the noise. I have no depression associated with it. The only thing I have associated with it is anxiety (however I have an anxiety disorder) that it will get worse. That's my only concern but bear in my I am an obsessive compulsive and sometimes the fear of suffering is sometimes worse than the actual suffering itself.

4.) Honestly I would not recommend Lenire but I have not tried it. My reason is that I have followed new treatments over the years and saw all the hype, the buzz, the dissatisfaction over the years and Lenire so far is going the same way in my opinion. However, if you're prepared to spend 3000 Euro on a treatment that has received little press, no publication of peer review and not so many positive comments on here then it's a huge gamble. You don't owe it to the community, but you do owe it yourself to find peace, whether that is trying Lenire is your call. Also I have spent money before on therapies and the gut wrenching heartache when the tinnitus stayed the same was heart breaking.

5.) People will say tinnitus goes away once they habituate. My friend told me his went away but in most cases that doesn't happen. What really happens is that your brain becomes so used to it, the attention to it becomes less and less. Like the sound of a fridge, you don't hear it because you're so used to it or the noise doesn't signal any importance. That's what habituation is... you just learn to live with it.

I regularly talk to somebody with tinnitus who can always hear it over his truck diesel engine driving and he only 'hears' it when we talk about it because he's that used to it.

You'll be fine.

 

[QUOTE="Paulmanlike, post: 512965, member: 23965"The good news is that companies are trying hard to get an effective treatment out there because there is a tonne of demand for it.[/QUOTE]
Am I missing something? Tinnitus and companies trying hard to find help just does not sound right!

 

So a 4 for you is really a 10 if your 10 was "concert loud" with 30 tones...

 

Eh, tbh the costs of a Neuromod trip just to get a MML measurement aren't really worth it IMO - if it works, I'll know, if it doesn't, there's no sense in measuring some arbitrary values. I've had this thing long enough to tell in various environments if it's being masked better or not and I don't really care about attaching a number to it. Especially if that number costs me what I make in one month, you know?

 

My tinnitus reacts to white noise so any MML reading for me is a load of tosh.

Does anyone know if this reading is used for the white noise level on the device?

 

Good question. There is a component of white noise and the fitter said all the sounds are part of the treatment. If you have reactive tinnitus, I suggest wait a few more years for neuromodulation technology to mature. My opinion is that it still is in beta mode.

 

Agree. They're definitely on to something but it's very crude.

At least we have SOMETHING actually released (instead of the usual "scientists made miracle discovery which will cure tinnitus as soon as it hits the market in just 5-10 years!").

 

Otonomy, Frequency, Regain, Neuromod, Susan Shore, Hough.

I agree though. Certainly from an investment side, I would not touch any tinnitus treatment with a barge pole because of the sheer complexity of it. It would not make sense given its mechanism of action is not fully understood. :-(

How are you doing @hans799? It's been a while. Would you say Lenire works? I see you rated it 4/10 before, then maybe 2 or 3 after. For me it's not very convincing, some days I would rate mine 2, other days 4. It doesn't come across as significant enough for me.

I agree they are onto something, but because everybody is different, I don't think we will see consistent strong results across the community.

 

It definitely does something... just not always in the right direction. First 6 weeks were great, noticeable reduction. Then the timing switch screwed it up, the 2nd timing caused a spike. They put me back on the 1st timing but it didn't cure the spike. I'm currently taking a few days' break from the treatment on Neuromod's recommendation. After the spike's finally cleared I'll get back on the 1st timing again.

So it definitely affects tinnitus. But apparently, they can't predict well enough what a given timing will do for a given patient. I think that over time, Neuromod and similar companies will gather enough data for this to be a reliable treatment method but these are early days.

 

I have the same experience. Although I got a persisting spike after just 3 days of using Lenire. I believe that they knowingly are doing a “one size fits all” although that is clearly not how signal timing in neuromodulation works. Timing is unique for each individual and a true treatment must entail a much more thorough examination and setup. I suspect Neuromod is skipping past essential aspects of true neuromodulation in a race to being first to market.