Lenire treatment

[Worldmetal]

I have just been diagnosed with T . I have been looking into different treatments and lenire seems to be a positive treatment. Has anyone tried it. Or think it may work

[Philip6]

Its not recommended by the BTA, and there is some evidence that it can make tinnitus worse in some people. There is a forum on Tinnitus Talk of people that are trialling or have used Lenire, I think the general view is that it doesn't work, I've seen a few people initially being quite positive about it, but come the end they say it doesn't work. The initial trials of Lenire were very tightly controlled, they were very fussy about who they let take part, you had to be under 30 and have had tinnitus for no longer than 5 years. Once the trial was finished it took them over a year to analyse the results, which in my opinion points to mixed results. It all depends if you are prepared to risk £2000 on something with no guarantee of success, if it worked it would be worth every penny, but does it work? I doubt it.

[perlcoder]

I haven't tried it, but, from all that I have read (quite a lot), I endorse all that Philip6 has said. Those of us who have suffered from T for substantial periods of time (more than 20 years in my case), who have tried it tend not to improve from its use, and some do experience a worsening, I think that outcomes for those more (or very) recently diagnosed may be better. My knowledge is far from comprehensive but I don't see the established providers of various T therapies partnering with Lenire - there may, of course, be purely commercial considerations behind that. Proceed with caution.

[Worldmetal in reply to perlcoder]

Do you know if there is any evidence to say it works for patients who have recently been diagnosed. Is it better to maybe combine it with cognitive therapy

[Philip6 in reply to Worldmetal]

I think the success rates of people using masking and CBT are slightly better than people just using Lenire.

[perlcoder in reply to Worldmetal]

My impression is largely anecdotal I am afraid, but it is something I have seen more than once. I don't contribute to any forums / subreddits '/ YouTubes etc other than this one, but I do keep an eye on several.

Just in terms of personal experience of Lenire, a person whose account I have read with interest (I don't know him at all - afaik he is not on this forum), is a British software developer called Remy Sharp. He has severe tinnitus. He has tried Lenire (including disassembling the devices), and blogged about it. Most of his blog entries are about other matters, and he does not go on about his T, but I consider him reliable.

Look for several "Me & Tinnitus" entries.

remysharp.com/2021/07/01/me...

[Happyrosie]

apart from what’s been said, I do think that if you go to the website of Tinnitus UK (formerly British Tinnitus Association) you will get a lot of information.

[Worldmetal in reply to Happyrosie]

Thanks

[TinnitusUKPat Partner]

Morning folks

Rather than a negative viewpoint, Tinnitus UK's position on Lenire is a bit more nuanced. Our major reservation is that the published studies are drawn from a small cohort of existing device users, so it can't be seen as offering a completely independent view of this implementation of bimodal stimulation for tinnitus relief.

To quote from our guide on the website:

"These initial studies are promising, but further research is needed. Independent clinical trials, with a waiting list control group or similar will be required before bimodal neuromodulation could be established as a clinically recommended treatment for tinnitus."

Full disclosure, Lenire are the headline sponsor of our annual conference this year and we offer a discount to Tinnitus UK members taking up Neuromod's tinnitus Otologie Tinnitus Care service as part of our membership package.

[Higgsy45 in reply to TinnitusUKPat]

Isn't the Auricle Device developed at Michigan University a better option? The quality of the trials looked better.

[TinnitusUKPat Partner in reply to Higgsy45]

I guess the core difference is that Lenire is available and the product from Auricle is at the earliest a few years out. And that's for the U.S. - there are no plans to pursue an international rollout until Auricle can build their U.S. business.

[Higgsy45 in reply to TinnitusUKPat]

Spot on. I understand the conflict of interest with Lenire, however support them sponsoring events like any other sponsor. The research and quality of the trials with Auricle is more thorough and tight thats for sure. I spoke to someone in the phase 1 trial several years ago. He said for him there was absolutely no doubt at all it was effective. He had tinnitus for many years and knows a placebo effect from a real treatment. Maybe we could raise funds and collaborate to get it through EU approval?

There are already offers from friends in the USA of free bed and breakfast for those of us in Europe as soon as it becomes available. Last one out turn off the lights.

On a slight tangent, Extracochlear stimulation is showing very promising results. Human trials ongoing in the USA by Matthew Carlson and a 100 patient trial by Hamid Djalilian are underway.

Its disappointing that in 2023 there is not a single trial for tinnitus in this country.

At least the biobank is up and running so something to be grateful for!

[Worldmetal in reply to Higgsy45]

I have read up on lenire, and met an audiologist here based in the uk. Results are dependent on the patient.

Just like any other medical procedure or medicine. Anything is worth ago. I am all for alternatives to antidepressants and just living with it

[Higgsy45 in reply to Worldmetal]

This will be a private audiologist taking thousands of pounds off you for a product with no scientific rationale and not a single placebo controlled trial with tinnitus loudness as an outcome measure.

[doglover1973 in reply to TinnitusUKPat]

I'll be honest Pat .. It makes me a little uneasy.

[Philip6 in reply to doglover1973]

A chap in a tinnitus group on Facebook recently tried Lenire, at the end of the treatment period his tinnitus had doubled in volume and hasn’t gone back down. Not good at all.

[surreycccfan]

I have read a fair bit about Lenire and for some it seems to help and for others it doesn't, I think the challenge you may face is the current evidence based research all comes from Lenire and is not independent plus (and more importantly) when Lenire say it has helped individuals I believe it is taking its results from surveys just after they have completed their timebound course. The challenge with this type of metric, is that for some folks with T, just taking a positive action in relation to their T can help improve their situation. For meaningful metrics we really need to see long term feedback from those who have used the instrument. I am not for or against Lenire, just wanted to give a heads up on their 'statistics'. Stay safe

[ade-the-pade]

Good morning

I used to be on this site and now returning. I have direct experience of the Lenire device, I made several trips to Dublin from England. I am a long term sufferer and hoped that this would be the breakthrough that would give me silence or at least give me some relief.

It was expensive but I though that I needed to give it a go.

I have T in both ears, One high-pitched and the other fluctuating. They did all the testing and sent me off with the machine. I used it as suggested and, in short, it sent my T through the roof. They readjusted the setting but I was left in a worse state than before.

I am under the Royal ENT in London and told the consultant about the device and my experience. Their strongly given advice was not to use this type of device. There are far too many "Unknowns" and variables. There is no independent evidence that it works and risks associated with it.

I can understand why people want to leave no stone unturned. For me, it made things much worse and left me in a dreadful place.

Sorry for the negativity. I wish you peace and quiet.

[Worldmetal in reply to ade-the-pade]

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