Lenire — Bimodal Stimulation Treatment by Neuromod

Not clinical hyperacusis. Just people on the spectrum. (I was part of Hubert Lim's bi-modal stimulation trial). I was a super responder, as you put it.

 

"You mean you'll do a Nintendo 64 and buy-in if that happens?"

 

What do you mean by that?

 

Agreed. In fact I'm more stoked about the research paper than about the product release. If the study says that the stuff works, then commercialization will happen just as surely as night follows day, thanks to the wonderful logic of capitalism. If, however, the study shows lackluster results... even the shiniest, most perfect product release won't really mean anything.

BTW @Paulmanlike I noticed over the course of these very long Neuromod/Lenire threads that we have a quite similar (generally optimistic) outlook on Lenire, and also our situation with tinnitus is pretty similar (blessed with fairly low volume and good habituation). Just wanted to ask: despite good habituation, do you still get bad moments or bad days with tinnitus? And is the promise of Lenire also an important coping mechanism for you when this happens? Sorry if too personal.

 

@kelpiemsp Are you still experiencing close to silence?

 

Hi @hans799

Not at all too personal, I’m very happy to discuss my experiences with tinnitus. We’re all in this together, after all!

I’ve experienced both what I would describe severe tinnitus that had multiple tones coming from all over my head and ears and the state now that has remained pretty much constant. I have a whine in my left ear that can be masked as well as ‘head tinnitus’ that can’t be masked - like this particular form of tinnitus is way down there in the auditory system. While I don’t describe my current chronic tinnitus as severe now (because I know what severe sounds like), my emotional reaction to it in the past has been severe. Tinnitus was a contributing factor to my depression that led to a hospital stay.

To answer your question whether I still have bad days is I guess part of the whole ‘suffering with tinnitus’ rather than ‘living with tinnitus’, is the fear of it actually getting worse and those negative reactions to it coming back. If I lived with this volume for the rest of my life with a guarantee it wouldn’t get worse, I’d cope. I wouldn’t like it but at least the fear associated with the condition would be gone. But the fear is always there. I guess with tinnitus and its unpredictable nature and a noisy world, that fear of it getting worse can sometimes fuel my anxiety towards it. That for me is a difference between suffering with it and living with it. So yes, I do get some bad days but for me it isn’t a changed increase in volume but rather the negative reactions to the tinnitus.

As far as the actual volume, mine does not fluctuate in volume although sometimes my perception of it changes. It kept me awake in the past and I had to always use a bedside noise generator. Now because I’m so used to the noise, I sleep without the generator.

Habituation for me is that I have accepted the noise level, however I still struggle with the associated anxiety of the unknown.

Now as for Lenire as a coping mechanism and the promise of 80% achieving benefit. I have followed tinnitus research for years. Not just Lenire, but any other promising avenues of treatments coming to market have always been a coping mechanism to me. I’m not at a point where I once was where I was vulnerable to scams (I bought several things that were scams but desperation fooled me). I know members here who have spent thousands on products with little to no evidence behind it. That’s what desperation does. But that point with me has ended - I am optimistic about Neuromod but I am also cautious and will be waiting on the papers and the evidence to build up so I can make an informed decision to purchase it. At one point I would have just bought this, but desperation achieves nothing. I will also be disappointed if it doesn’t live up to the hype, but I’ll bounce back and continue to keep up with the research. Also, not just a coping mechanism, dare I say, I actually enjoy reading about it and discussing it. It gives me a nice feeling of hope and something to want. When the day comes that a real treatment surfaces that helps most - what a feeling that is going to be, a feeling that somebody who has never suffered from tinnitus is probably never going to understand.

Cheers Hans. Hope that answers your questions.

 

Life is good. I had a tinnitus spike a few weeks ago but it only lasted a few hours. It's getting quieter and quieter. Need to be wearing 26 dB NRR muffs for 30 minutes to have it be noticeable.

 

The more I hear about your improvements the more amazed I am. Incredible.

 

I don't know if you can answer this, but might as well ask. My tinnitus is super reactive... and I've got decently bad enough hyperacusis. I still think this could help me tremendously (potential super responder!) but I do have some concerns that prolonged headphone use could make my tinnitus worse... when I tried white-noise generators for two days the tinnitus increased significantly. I generally don't use headphones any more since getting tinnitus, only for transcribing interviews for work.

Think this will work for me, or is there legitimate "danger" in headphone use making my reactive tinnitus worse? I'd happily put up with short-term spikes if it puts me on the way toward long-term relief.

Edit: I will add that while my T is very reactive on a daily basis, it always eventually goes back down to its baseline -- and this is the same whether I have a spike for a day, a week, or a month.

 

@kelpiemsp always coming around and dropping hope bombs. Love it.

 

Imagine, as Neuromod say, that there are responders and super responders out there just like @kelpiemsp, but they aren’t allowed to talk about their results or they just don’t come on Tinnitus Talk. I can’t wait if it happens to see Tinnitus Talk flooded with success stories, what a breakthrough it will be. I just don’t know how I will be able to thank Neuromod if this happens...

 

@kelpiemsp
Hi - so are you saying Lenire really helped you? Sorry for asking but I haven't seen many of your posts.

Also - do you know what the exclusion criteria will be for the released device?

 

You keep asking this @Allan1967 and nobody knows for sure as of yet as Neuromod have not released this information.

But I would assume objective/pulsatile tinnitus is excluded and any obvious reason for tinnitus. This is because a physical cause for tinnitus exists and modulating the brain won’t do anything.

For the most part subjective tinnitus is idiopathic.

What are you worried about?

 

I think Neuromod may have a suggestion ££££££££.

 

Here's @kelpiemsp's story in full. Same technological basis as Neuromod, different team:

https://www.tinnitustalk.com/thread...rch-with-acoustic-and-body-stimulation.28022/

@kelpiemsp Thank you for continuing to post here even after your tinnitus has diminished. Your posts over the past year or so are the reason I have hope. Your tinnitus as you described it was as bad as mine is now. My current life has shrunk to the size of a postage stamp. I never leave the house except to work (at a library, which is still too loud quite often), my best friends are earplugs and a pair of massive grey 3M Peltor ear muffs, music or films only at home at the lowest audible volume with a wired volume potentiometer in my hand at all times. Constant ear pain except while drinking. It gets old. I want a new life. I want to make my own music again.

You make it seem possible.

 

This! If I was given a choice between a 50% chance of the tinnitus disappearing completely, or a 100% guarantee that it wouldn't get worse, I think I would chose the 100% guarantee of it not getting worse.

Most of us have the ability to get used to something over time, but when that something is constantly fluctuating and you're worried that there isn't a ceiling for how bad it can get, it takes away that ability I think.

Imagine if one day we can have a spike, roll our eyes and blow the dust off our tongue zappers like we're popping an aspirin

 

And this:
from an original position of over 85 dBs.
‘WOW - incredible!’

 

Oh man that's a shame if that's the case. I have hearing loss and ETD, however, I attribute my tinnitus to loud music, but can't rule out that the hearing and ETD is also contributing to the tinnitus. I'd try anything at this rate, so I'm cautiously optimistic about it all x

 

That's the dream x

 

Didn't some people on the Neuromod trial have their tinnitus get worse as a result of using the device, and leave the trial?

 

Neuromod said that those who responded best was those with hyperacusis. It doesn't help hyperacusis though, but Neuromod has never claimed this.

 

Now I am once again worried if those of us with worse than mild hyperacusis cannot use Leniere

 

Should that not read “If the day comes...?”
At this point in time there is no certainty, is there?
Not wishing to upset anybody here, by the way.
Just promoting caution.

 

I don't think it's a pipe dream to expect a cure for tinnitus at some point in human existence, unless the world is coming to an end imminently (which in fairness it might)!

And even if that day doesn't come - as Bill said once, hope is the last part of a human to die. I would hate to have this condition without it!

 

Noooo, don't tell me that!

I think there is a breakdown somewhere of how well people responded - a small number of people said their tinnitus got slightly worse, but I always thought that might have been because they were monitoring it more, expecting an improvement. So if that is the case, they might hopefully just be non-responders...

I don't think anyone said it got significantly worse - but someone feel free to correct me on that!

 

In the interview O'Neill said: "There were a small number of patients who have gotten worse. Not dramatically, their tinnitus might have gotten elevated. These patients were asked whether they wanted to discontinue the treatment or continue. A lot of them continued, most of those cases then resolved. So, we haven't had any serious adverse events on the study. There aren't any patients that we were very concerned about."

 

Most?! Not all??

Now, I am seriously getting worried.

 

Well I'm worried about not being suitable. I imagine people who are pregnant won't be eligible or people who wear pacemakers. But there might be more.

 

I still can't get past those testimonials. Out of all of the "successful" results those are the best they could find?

 

It's not going to be that simple and it's certainly not going to be an instant relief. It takes months for neuroplastic changes to occur. Also, Neuromod isn't going to protect us from further damaging our synapses between our supporting cells and auditory nerves.