Lenire — Bimodal Stimulation Treatment by Neuromod

#3,661
I suppose we can have optimism that this thing takes a while to work... from what I understand of changing neuroplasticity is that it takes time with continued usage for the brain to 'rewrite itself'.

Those that have got a Lenire and not seeing results yet just keep using it and see what happens. We are all rooting for you to succeed.
 
#3,662
JohnAdams said:
I know it is not easy and there is no easy answer, but you have to dig deep and keep pushing forward in life. Imagine my horror looking at my 2 year old sleeping on the couch, fresh into this, in absolute shock and horror about how this would affect my ability to be a good father. 1 + year later, and I have improved a lot and life is getting easier. Hang in there friend.
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@Kam75
I think what John says is true for most tinnitus sufferers. I had a 3 month old baby when my tinnitus started. I was suicidal and thought my life ended. The tinnitus was really driving me crazy. For me it was a slow healing and habitation process, it took almost two years.
Now, almost 5 years later I still want a cure, but I can live with it and live a happy life despite the tinnitus (and hyperacusis).

You have to be strong and work through this period, it will get better! Believe me.

I am posting this because if you spend time on tinnitus forums you forget there are a lot of people with tinnitus who live pretty normal and happy lives.
 
#3,663
#optimism

Another post from @Clare B:

« Nearing the end of the time period of using the device I had some fluctuation in my tinnitus that I hadn't had before, some higher pitch sounds, some louder days. It wasn't until shortly after the end of the trial that I noticed the tinnitus quietening and having my very first day of silence for a very long time, then it came back and went away again. It was very gradual, I didn't just wake up one morning and it was completely gone, not at all. It just gradually tapered off and then went for good ».

And Ken:

« Hi Alice, i got my tinnitus from loud factory nice and have lost a little hearing in the high pitched range. It has definitely helped me cope with the sounds that I hear and has reduced the volume to an acceptable level. Probably reduced by one third and the terrible spikes have gone completely ».
 
#3,664
I don't understand the people who have travelled and are now giving up after a short time.

There are thousands of us who would happily follow the procedure exactly as we're told, and even without relief would still continue the trial so the results count toward a future treatment that will actually work.

To deviate from the commitment you made is far more of a waste of money than staying committed and giving a real contribution to treatment research.
 
#3,666
Quetiapine_Kid said:
I don't understand the people who have travelled and are now giving up after a short time.

There are thousands of us who would happily follow the procedure exactly as we're told, and even without relief would still continue the trial so the results count toward a future treatment that will actually work.

To deviate from the commitment you made is far more of a waste of money than staying committed and giving a real contribution to treatment research.
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Yep, same here. I guess some people just have too much money on their hands.
 
#3,667
John, regarding your deleted post - I wish I was a Neuromod staff member because then I'd actually have access to Lenire. Alas I am not here to prey on the innocent. The market for tinnitus is very niche and there's far more dollars to be made in more widely spread incurable illnesses.
 
#3,668
Quetiapine_Kid said:
John, regarding your deleted post - I wish I was a Neuromod staff member because then I'd actually have access to Lenire. Alas I am not here to prey on the innocent. The market for tinnitus is very niche and there's far more dollars to be made in more widely spread incurable illnesses.
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Very niche? You know 1 in 10 people experience chronic tinnitus, and if I remember correctly 1 in 100 suffers from it. I think you underestimate how big the market is.
 
#3,669
Quetiapine_Kid said:
To deviate from the commitment you made is far more of a waste of money than staying committed and giving a real contribution to treatment research.
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People who are trying to travel and buy-in at this point aren't contributing to research; they're consumers spending their own money trying to manage their health conditions. It seems silly to me to spend the money and then not stick with it for a month or two (if there's really people doing that, which I don't see much evidence of?) -- but it's not harmful. They didn't make a "commitment", they spent money. People being seen in clinics will not be part of future research, unless they're specifically contacted for followup (in which case, people who say they stopped using it quickly just get dismissed into a "doesn't matter" cohort).
Quetiapine_Kid said:
The market for tinnitus is very niche and there's far more dollars to be made in more widely spread incurable illnesses.
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This seems myopic; just looking at the VA healthcare system, tinnitus costs them more than nearly anything else (and hearing conditions overall cost the most out of any condition the VA treats, because anyone who shoots a lot of guns will have these problems). Beyond that, 1% of people with severe tinnitus is roughly the same statistic as the number of people with schizophrenia, a condition which has certainly gotten a lot of drugs and treatments thrown at it. As your username is testament to...
 
#3,670
BigNick said:
I met a Canadian chap when I was there on the 6th. Don't know if you're on the forum?!
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That was me at the office on the 6th. I am actually going back this coming Tuesday to pick up the device.

How are things going after 2 weeks of treatment?

As an aside, can anyone tell me where the device is manufactured? I am just trying to get things lined up to ensure I have no issues bringing it back in to Canada, with respect to paying duty or taxes.
 
#3,671
linearb said:
People who are trying to travel and buy-in at this point aren't contributing to research
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The current total number of test subjects across all neuromodulation approaches to tinnitus has been what, less than 1,000? That's pretty small considering a condition as variable as tinnitus.

Neuromod really barely gathered enough data to be able to demonstrate credible trendlines, and with stricter exclusion criteria than are currently in place. That makes it hard for any of us to determine a realistic probability of our results and why I have repeatedly said they should have waited and run a broader TENT-A3 trial before commercialization.

Because of this, anybody who uses Lenire will absolutely add further data-points which will most likely be used to improve treatment. Neuromod would be foolish not to do so. And in addition to this of course this forum has organized its own independent data-gathering initiative which, while not improving the product directly, will at least help people make wiser choices.
 
#3,672
froglord said:
That was me at the office on the 6th. I am actually going back this coming Tuesday to pick up the device.

How are things going after 2 weeks of treatment?

As an aside, can anyone tell me where the device is manufactured? I am just trying to get things lined up to ensure I have no issues bringing it back in to Canada, with respect to paying duty or taxes.
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I seemed to respond to it very quickly and have definitely had some quieter periods. I have had some fluctuation but I'm feeling pretty hopeful after two weeks.
 
#3,675
Thanks a lot for your positive feedback @BigNick, we all expect those kinds of posts here.

I hope Len*re will soften your tinnitus enough to make your life peaceful.

I wish that for all of you guys who are trying the device.
 
#3,679
Hi all,

I haven't been around for a week or two. My experience so far?

Last week was manageable for 6 days, but that's because I've dropped from 2 sessions to one a day and I'm doing that at night.

TBH I think there's something in the music that's making my tinnitus worse, possibly the white noise hiss/rain type sound, which I will have removed if I can which I'm sure Neuromod said they can.

This week, the tinnitus has been a bit naughty and I'm still sticking to the once a day. My tinnitus was immensely reactive when I was doing two sessions a day and my head was buzzing a lot of time.

My house alarm went off a couple of times in one day recently, the alarm panel screaming although I had the speaker muffled plus I shoved on some ear muffs within a matter of seconds so I don't know if that's anything to do with it.

I've had to delay my 6 week return for 2 weeks due to Ryanair strikes.

TBH I'm not really filled with optimism that this will work for me.
 
#3,681
@Allan1967

That's the reason why the treatment takes so much time... 12 weeks!
It's not easy but don't give up and keep a positive mindset.

This device really can HELP you.
It's too early to conclude.

Your results at mid-treatment don't mean your results at the end.

Some people even observed results after completion of the treatment.

Keep the faith :)
 
#3,682
Allan1967 said:
Hi all,

I haven't been around for a week or two. My experience so far?

Last week was manageable for 6 days, but that's because I've dropped from 2 sessions to one a day and I'm doing that at night.

TBH I think there's something in the music that's making my tinnitus worse, possibly the white noise hiss/rain type sound, which I will have removed if I can which I'm sure Neuromod said they can.

This week, the tinnitus has been a bit naughty and I'm still sticking to the once a day. My tinnitus was immensely reactive when I was doing two sessions a day and my head was buzzing a lot of time.

My house alarm went off a couple of times in one day recently, the alarm panel screaming although I had the speaker muffled plus I shoved on some ear muffs within a matter of seconds so I don't know if that's anything to do with it.

I've had to delay my 6 week return for 2 weeks due to Ryanair strikes.

TBH I'm not really filled with optimism that this will work for me.
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As difficult as it is, I'd stick with the two 30 minute treatments per day as they recommend, you might not see results at the end if you don't do the complete therapy. You have to remember this thing is stimulating your trigeminal nerve, other people here are noticing an increase in the first weeks as well. You could almost be out of the woods.

Remember, @Clare B didn't have improvements until after the 12 weeks.
 
#3,684
friend74 said:
Yep, same here. I guess some people just have too much money on their hands.
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If this thing was making your tinnitus a lot worse imagine how scary that would be though. These people are guinea pigs after all.

To me it seems crazy that people with tinnitus should seek a cure which requires wearing headphones, the very thing that we should avoid at all costs.

The other thing is how can playing some music help? It doesn't make sense to me.

My interpretation of this therapy is all the measurements of its effectiveness are based around the changes to the patient's quality of life. I doubt it does anything at all to the actual tinnitus levels but somehow makes it more bearable to the patient by making it less intrusive and thus giving a better quality of life.
 
#3,685
john paul said:
If this thing was making your tinnitus a lot worse imagine how scary that would be though. These people are guinea pigs after all.

To me it seems crazy that people with tinnitus should seek a cure which requires wearing headphones, the very thing that we should avoid at all costs.

The other thing is how can playing some music help? It doesn't make sense to me.

My interpretation of this therapy is all the measurements of its effectiveness are based around the changes to the patient's quality of life. I doubt it does anything at all to the actual tinnitus levels but somehow makes it more bearable to the patient by making it less intrusive and thus giving a better quality of life.
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What?!

Are you serious? This after 123 pages in this thread?
 
#3,686
john paul said:
The other thing is how can playing some music help? It doesn't make sense to me.
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I think the idea is to stimulate the damaged/changed areas of the dorsal cochlear nucleus (DCN) with sound and electricity. Zapping the tongue also gets the zap to the DCN via the vagus nerve. I think the chirp sound people are talking about is a quick low to high frequency sweep that makes sure that it hits a broad range of frequencies and when that is paired with electrical stimulation to the DCN, it resets something like gain in the affected areas which calms down hyperactivity. The other sounds I believe are irrelevant, and that seems to correlate with @Allan1967 's report that they can take the other sounds out. I could be wrong about that, but that's how I've pieced this together in my head.

Despite my criticism of the company and certain players involved, I still think this is a good idea.
 
#3,688
Thanks all, but I can't manage twice a day. I will give it another shot, but if it's anything like before I can't plus Neuromod suggested just once a day anyway.

The reactivity of my tinnitus was getting worse than it ever was before I started.
 
#3,689
BigNick said:
I seemed to respond to it very quickly and have definitely had some quieter periods. I have had some fluctuation but I'm feeling pretty hopeful after two weeks.
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You know we're going to ask the usual questions... What's your tinnitus like? High or low frequency? Tone? Hissing?
 
#3,690
What I can see according to the feedback is that Lenire seems to work more on people who didn't have tinnitus due to loud noise such as Clare B and BigNick.

I'm scared that the device will not work that well on people who have tinnitus due to acoustic trauma, maybe because our hair cells have been destroyed :/

I hope I'm wrong. I can't wait to have more feedback from other users...!
 

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