Lenire — Bimodal Stimulation Treatment by Neuromod

@hans799, how would you describe your tinnitus in the first six weeks? Did you get to hear silence? Did the tinnitus disappear at any time?

Thank you very much for telling us your experience with Lenire.

 

Can it really just "go over time"? (I am losing a little bit of hope?)

 

No they told me it was only for setting a baseline.

 

Yes. Most commonly in the first year. Sometimes within the first two. I have come across the occasional person for whom it’s gone in up to four years. I think fading a lot within the first five months is an excellent sign. There is truth in what Paul says. There is major fading in the first months if it’s going to go.

 

But the tinnitus isn't really "gone", is it? It's just quiet enough that you don't notice/care?

Even then you still have to go through all the work of making sure that none of your meds are ototoxic, that you always have earplugs with you, missing out on fun social occasions because they might get too loud. (Kinda just jumping in here, so sorry if I'm totally missing the point of the conversation.)

 

I agree. @kelpiemsp alluded to this idea when he stated that he believed the reason the treatment he received in the Minnesota trial was so successful was due to the addition of an EEG that somehow fed into his setup parameters.

If Lenire is one of the natural extensions to the Minnesota trial I feel we're quite within our rights to press Neuromod on the EEG aspect of it, or lack thereof, and get some answers.

 

I agree with Paul and Agrajag. If your tinnitus has been fading over the last 5 months you need to give it more time. I certainly wouldn’t try Lenire yet with these mixed results and your situation.

 

There definitely are people whose tinnitus fully fades during the first year, though I think the origin of tinnitus matters a lot.

 

I think people are overstating the connection between Minnesota and Lenire. The two devices were developed independently. If Neuromod is trying to glean things from Minnesota, great, but they don't have a common origin as far as I know.

 

It became thinner, weaker, quieter; I couldn't hear it in several situations where I could hear it before (e.g. before Lenire I heard it over the air exhaust fan in my bathroom; afterwards I couldn't). It was also much less reactive, e.g. we had a Christmas office party which had safe (~75dB) noise levels so I attended without earplugs and afterwards there was zero change in the tinnitus, whereas previously it would have been shriller for a few hours. So overall, the "burden of tinnitus" was noticeably decreased.

I didn't yet get total silence but my tinnitus is 30+ years old so I didn't expect that after 6 weeks of treatment

By the way, these improvements came back after I went back on the first timing - except for the one damned noise which was spiked by the second timing. That's why I'm now resting until the spike ends and then going back on the first timing again. Hopefully it won't spike again, and then I can see how deep the rabbit's hole goes. Maybe there IS silence if I do the first timing long enough.

Also, being able to DO something to actively COMBAT the tinnitus instead of just surrendering to it is an enormous psychological relief.

 

I have come across people for whom it went altogether.

Wish that had happened to me.

 

I’ve read @kelpiemsp posts from the beginning - it seems to me his tinnitus was intermittent. He referred to bouts of tinnitus a lot and tinnitus coming back. Am I missing something?

That leads me to be more skeptical about the abating of his tinnitus as it could be from natural causes.

 

What makes you think that?

As far as I know @kelpiemsp had had tinnitus for a very long time, since childhood.
During the treatment his tinnitus fluctuated between being better and coming back.

Regarding the timing question:
I think Neuromod is very aware that individualised timings work better, they probably decided to go for the simultaneous timings, as they might work for most, but are probably less effective.
They sacrificed effectiveness for practicability.

 

My interpretation of this was that the effects of the treatment wore off. It would be nice if he came back to participate in the thread.

 

This was not my take away. I read it as it fluctuated during the 9 months of trials. Then 2-3 months after it was over he noticed silence. In one post he says Hubert Lim is the guy that “cured” his tinnitus.

 

Well it’s hard to say if someone’s tinnitus is not constant and has got better before...

 

From what I understand, it’s mostly because they kept experimenting with different timings.

 

I sure wish Neuromod had a timing that was the same as Dr Shore's published timings that her research shows to reduce tinnitus. It will be very interesting to see how effective Lenire would be with Shore's timings.

 

He had TMJ issues that played into it as well. He had it since childhood. I’m struggling to find where his tinnitus was stated as not being constant.

 

I don't know if it would make much of a difference. They likely had full access to the University of Minnesota tech and it hasn't exactly produced robust results. It may be that the device itself has limitations and that improved timings will only make a marginal difference.

 

@spedgas read all his messages from the beginning.

 

I’m wondering if there is any drawback or even danger in doing Lenire and then trying another neuromodulation device, such as Dr. Shore’s, at a later date?

 

You're actually onto something, University of Minnesota's secret is that it uses deeper brain penetrating technology.

 

The way I understand it, no. These devices cannot cause permanent changes, that's not how they work. If you stop using them, you'll eventually revert to your previous baseline. That's both a blessing and a curse: a curse when they work (because you have to keep using them to maintain the benefit) but a blessing if they don't, or if you want to switch (because you can just drop them and you'll revert).

So if you want to switch devices you just cool your heels for a few weeks and you're as good as new.

On a different note: I've been off Lenire for 4 days and (knock on wood) the spike that's been torturing me seems to be subsiding, however the rest of the noise (which hasn't been spiking) is still very quiet. So I'm in a pretty sweet spot right now. Will chill without Lenire for a few more days and if the spike really is over, I'll restart the zapping with the good timing.

 

To Hans799:

How many total weeks have now elapsed since you started with Lenire?

I feel a testicle-punching frisson of dread when I contemplate spending $2,400.00 on a device that "rewards" me with a new unbearable sound.

 

18 weeks in total.

Don't. Even if you get a new sound it'll be temporary. Lenire and other such devices don't have permanent effects.

 

To Hans799:

Your forthright, honest reporting about the pros (and CONS, as far as I am concerned) is very commendable.

To endure this newly created sound as you have indicates that you are stronger than I am.

So, I assume that the strategy is: Lenire may create a new sound but it will eventually go away and the pre-existent one will be reduced?

Are we guaranteed that the new sound will really, finally disappear?

This is nonetheless very chancy, and in fact too downright scary for me to undertake.

 

Nothing is guaranteed at this point: read the different reviews in the Lenire User Experiences thread for more information. The new sound is a side effect that happens with a lot of users, it's not "meant" to be there. The treatment itself is still highly experimental and can go either way.

Don't take it wrong, this type of treatment could work well once the kinks have been taken care of. Right now though, it's mostly a gamble.

 

Ah, there's a misunderstanding here.

Most of my tinnitus is 30+ years old; one specific sound is 3+ years old. This 3-year-old sound is still much older than many people's tinnitus here. It is "new" only to me, only in relation to the other sounds.

When I report that Lenire has spiked the "new" sound, I mean that this 3-year-old sound is now louder. It wasn't created by Lenire. Just spiked. Lenire by itself didn't generate any new sounds.

This is why I'm very optimistic that it'll fade. Spikes like this are an unfortunate but known side effect of the treatment. If I had an entirely new sound, I'd probably be more scared.

 

It's good to remember @Allan1967 ended his life partly because of a worsening caused by Lenire. But he also suffered an ear infection at the time so that didn't help.