Lenire — Bimodal Stimulation Treatment by Neuromod

I think I have a pretty good idea just how bad my tinnitus is. Thanks for letting me know. I'm just a few happy thoughts away from being cured.

 

I don't understand this Allan.

If Neuromod aren't bothered about you posting about your treatment, how would doing so 'affect that relationship'? I'm not trying to be arsey, I just don't follow the logic.

 

Hello Ann, bless you for asking... I've spent so much money on my tinnitus you wouldn't believe, I'm cleaned out

I'm just grateful for my hearing aids, they knock my tinnitus out 50%, otherwise I really don't know how I could manage with the tinnitus, it would be very difficult, maybe impossible.

All the best Ann.

 

Hello,

It's Simon here, the volunteer who is helping with managing the Lenire User Experience Group activities.

Just a short update on progress:

• The Survey which will be going to members in the group has now been finalized. The Survey incorporates feedback received from leading researchers in the Tinnitus field.
• The Survey will be low burden, and members will be asked to fill in a brief questionnaires at the device fitting stage, the 6-week checkpoint, the 12-week checkpoint, and then at 3, 6 and 12-months post-treatment stages.
• There are now 63 members in the group who have left contact details and agreed to Terms and Conditions.
• The way in which the Survey will be presented to members has been agreed.
• A brief introductory email will be sent to members over the next day or so. It is anticipated that we will commence to send out Surveys around the week commencing 14th July.

Thanks so much to everyone who has signed-up, and if you haven't signed-up yet you can do so by clicking the banner at the top of this thread!

PeterPan (aka Simon).

 

How have you been feeling, @kelpiemsp? Do you plan to eventually try Lenire?

 

I’m doing very well! My tinnitus is so low currently, I wouldn’t feel good spending money on it.

 

It is simply wonderful that the treatment you received has made such a long lasting impact on your tinnitus!

 

I'm presuming they aren't bothered.

 

It's closer to me (but still a different country) and I wouldn't have to risk a flight so yeah. I hope that it will not take that long.

 

If your tinnitus spikes from every little noise then Lenire will definitely worsen it. Unfortunately this is the case with me. No I have not tried Lenire but this is how my tinnitus is. I have high frequency hearing loss but I can't wear my hearing aids as my tinnitus is very reactive. Wearing hearing aids will make it worse.

 

I wonder if it would be possible for someone to ask at a future appointment if the people of Neuromod know how to identify the population for whom Lenire does NOT work for!

I do not understand it. Isn't it the brain that generates tinnitus and we all have the same model of brain, no?

Sorry for this simplistic reasoning.

 

I don't think that's the case.

Ken said in his testimonial that his tinnitus is no longer reactive.

 

I'm very encouraged because Hubert Lim led the trial you were on, isn't that correct?

 

Nice to see you @carlover. I recall you saying you’ve spent around £20,000 on tinnitus treatments with zero effect on your tinnitus apart from the hearing aids?

Will you planning on trying Lenire yourself, assuming the feedback is good?

Like you I understand the reluctance of forking out on new treatments due to the stubborn condition that little, if anything, works to reduce tinnitus. Hopefully this will be a breakthrough and just the beginning of things to come but I remain highly cautious.

 

Two of the testimonials mention their tinnitus spiking from everyday sounds. One was snapping a plastic yogurt pot and the other was a door slamming at home. Both had major improvement from Lenire.

 

They don't know who it does not work for.

We don't have the same model brain. Read up on SPECT scans.

 

This sounds amazing. I expected to have to sift through individual stories of usage and piece together what I could on my own. I appreciate your time and effort to make this rush of information more accessible. I’d also like to add that 63 people is a decent sample size for the initial public release of the device. Hopefully some trends will develop from the data and we can all make an informed decision on if it’s right for us. Thank you.

 

Sorry if this has been asked but how is Lenire different from MuteButton that we know was not effective?

 

Hi carlover, what brand your hearing aids are? Mine are Siemens. I have them from NHS. On low days they help a bit but when my tinnitus is loud and it is all over my head they don't seem to help. And also my tinnitus is very reactive. I think if I wore them all the time they would make my tinnitus worse.

 

Do you think by using Lenire, it could calm the tensor tympani muscle? (By the action on trigeminal nerve).

 

No. What you are likely feeling is pressure around your ear canal from TMJ. That can also cause fluttering, distorted sounds etc.

 

Hi BrStan.

Mine are from the NHS as well. They have a volume control, and in bed I crank them to max and for some odd reason even though it's silent it knocks the tinnitus out as I said by 50% which is enough for me to endure it.

With no hearing aids during day or night my tinnitus gets louder and louder, then the pain and pressure starts.

I had habituated up till 2011 when an ear infection cranked it all right up. I have high frequency hearing loss and my ear consultant said that although I won't believe it hearing aids will help the noise and he was right...

Sorry yours isn't helped by them... Good luck.

 

So, you are saying that hearing aids that enhances your hearing in the lower frequencies range (<8kHz) helps with your high pitch tinnitus (>8kHz)?

 

If any of you Europeans aren’t satisfied with your Lenire, just ship it over to me! I’ll be happy to dispose of it for you. Lol

 

Does it fluctuate or is it always mild?

 

Hi...

Not really, at the Acoustic Neuromodulation clinic in London they said my tinnitus pitch was 4 kHz. I have high frequency hearing loss, I think the hearing aids replace that.

 

I remember reading your posts when I first joined Tinnitus Talk in 2013. They were very helpful and made sense to me... everyone's experience is, of course, very different. Hopefully if Lenire helps the majority of people who are trying it, maybe it's something for you in the future.

Kind regards. Liz

 

I don't think MuteButton had a tongue tippy.

 

The first MuteButton device also came with a tonguetip. Article from 2015 with photo of the MuteButton device