Lenire — Bimodal Stimulation Treatment by Neuromod

BRAVO!

This is the kind of feedback I want to see from people participating. Fantastic!

I am very much looking forward to your future posts on this subject since you are very detailed in your posts.

I hope more people participating can make posts like this because this is the quality we deserve!

 

I 100% agree with you.

 

@Allan1967

I made her stop as the white noise was too high... It didn’t cover my tinnitus properly in the end but she didn’t press too much on the issue.

The noise was pretty high so I don’t think that’s what we’ll be listening to... I hope.

The volume and tip can be adjusted which we didn’t understand either.

 

@Redknight
Thank you very much for your detailed summary, I'm having some problems understanding the part about the psychiatric issues.

You are saying many people have been excluded. Could this mean that people were excluded for having for example depression or an anxiety disorder or because they are on certain medication?

 

Just wish to say how helpful it is for us Tinnitus Talk members not currently purchasing Lenire to hear the feedback - both good and bad - from those attending their appointments. We appreciate you all keeping us updated.

Although I am Lenire skeptic, I would be delighted to hear in the next few months people say "My tinnitus has improved a lot since I started with Lenire" or even "My tinnitus has gone completely". Certainly for Lenire to live up to its promises this is something we would expect to start hearing in a couple of months time.

 

It looks like Lenire is for people with mild tinnitus and mild hearing loss, who have no depression and anxiety. If your tinnitus is bad and reactive as hell and to mask it you need loud sounds you are out of luck. So people like me with extreme tinnitus will continue to struggle.

 

Hmm...

I hope they only protect themselves.

What can we actually expect from Lenire? I understand that silence is a huge expectation but... reducing decibels also?

[Ronnie's testimony is still bothering me. - Since I did the Neuromod program, I’m much calmer and relaxed about it….the biggest thing for me is that my focus on the sounds isn’t there as much ]

 

You were accepted right? That should mean that tinnitus loudness doesn’t matter, since you couldn’t mask yours.

 

Yes I was accepted... My hiss is pretty hard to mask...

 

This, if confirmed, would be rather disappointing, because the device would be withheld from those who may need it most. Obviously, with loud intrusive tinnitus the chances of developing psychiatric issues increase drastically. I hope they don't rule us out. I also wonder what they would say if one is taking medication. I don't think one should lie but perhaps it's worth weaning off any medication before seeing them, if one can.

 

@Candy, if you feel like discussing it, were you accepted and did you mention any medication/mood problem in the assessment? It would be quite a relief knowing that people with intrusive tinnitus and mood disorders who may be on medication can still be accepted.

@Allan1967, similar question for you.

If any of you feels like talking about this, otherwise no pressure clearly.

 

I'm a little bothered by how it seems like Neuromod is a little hung up on depression and anxiety? Is that seriously going to be an exclusion criteria? I mean, show of hands of anyone who has not become depressed from tinnitus.

I was pretty suicidal for a while and had catastrophic anxiety every day for half a year. My tinnitus isn't even that loud anymore, I'm in a much better place right now, so I'm not sure if I would say I'm depressed anymore. I've been working hard to get more sunlight and generally get out of my head.

But now I almost feel like lying to Neuromod if I'm putting my chances on the line. Someone is going to say that I'm doing everyone a disservice by lying, but I need this device. I DESPERATELY need it. I will do anything, pay anything to get my hands on it. And at the end of the day, getting rid of my tinnitus is what I care about, selfish as it may sound. I think you would understand, after all.

 

My 2 cents. They are probably excluding some severe cases of depression with the threat of self harm. That is a tricky situation for a physician to manage. This early in the product release is most likely just tighter control of the use cases.

 

This is my speculation only, but I think that this is just cold hard logic at play on their part.
Looking at it from their angle, they need to protect their business image first and foremost.

If suicidal ideation is a measure of how bad a condition or disease is, I firmly believe that tinnitus has to be either at the very top of the list or very close to it.
I mean the suicidal ideation amongst the severe sufferers is quite literally off the scale.

Even when compared to terminal cancer, most of the cancer sufferers just want to live out their remaining days as best as they can... for a severe tinnitus sufferer, "living it up" is precisely the one thing that they are unable to do.

From what I gather by reading many posts and frequenting various tinnitus websites/forums, there are literally thousands of people whom had made it clear that the Lenire treatment is their last stop before ending it.

I can only imagine that Neuromod is well aware of the volatile and sensitive situation this puts them in.
If any of these people use Lenire and it fails, the probability of them committing suicide is probably between 90-100%.
Should this information leak out, it would severely damage their reputation.

This is why it is best for them to screen out the most desperate individuals.
As harsh as it sounds, if they kill themselves after being rejected, it is no longer Neuromod's problem.

I would advise people to play it as cool and casual as possible, when getting assessed by Neuromod (no matter how desperate they really are).
Sometimes you need to play the game in order to survive.
This is probably one of the situations, that doing the wrong thing (lying) might actually save your life, because if you try this device your chances at improvement are much better, than not trying it at all.

 

I was honest about taking medication. They didn’t press too much or tell me to come off it, as I was planning to anyway.

 

Jumping to conclusions again. Purely speculation. I guarantee people whose tinnitus is worse than mild have been accepted. Depression will not keep the device from working. If they only accepted people with “no depression and anxiety” they would accept very few people. There is already somebody here that was accepted and was unable to mask their tinnitus with the white noise. Give it a rest.

 

To be clear, my tinnitus is mild to moderate, but I got no sense that having severe tinnitus would be any sort of exclusion. My journey is my own, yours might be very different. Mine is very reactive, but on a different part of the scale.

I won't speak fully on the depression or psychiatric parts, only to say that there is a line in the sand that once crossed would exclude you from the device. That's not too say that having any depression excludes you, at all. You might be a very functioning, normal person once your depression is managed.

I ave no information on drugs that would exclude you, although I speculate that they would ask that in the initial form if it were a medical/safety issue.

 

Does anyone know if they change the settings half way through the treatment like in TENT-A2?

There was a good 4-5 extra points off the THI this way if I remember correctly.

 

My tinnitus is very reactive. I drove with double ear protection and suffered hearing damage. I can't imagine masking my tinnitus for more than a second.

 

Thanks for such a detailed post. Really looking forward to seeing how you get on and hope this works out for you.

 

Seems there is no need to protect the staff's identify, it's publicly available on their website, complete with biographies:

Http://www.neuromodmedical.com/

 

These aren't interest charges, but there is a profit motive. The other plans can be canceled at anytime with notice, it is more of an opportunity cost. It is a transfer of risk plain and simple. People pay a premium for the opportunity ("option") to return the device. These types of arrangements exist all throughout the financial world. I wouldn't read that much into it.

What I can tell you is it would not be in their best interest to have a bunch of people taking up appointment times, devices, and resources only to return them part way through the treatment.

And before anyone tries to pin it on the efficacy of the device, just imagine they didn't offer the pay upfront option. People would still pay the same costs for the other options for a crack at this treatment.

 

I wasn't overly impressed with their... functioning, let's say. I was there 10 minutes early and they asked me to complete the THI questions on a tablet, but I was then left waiting for 30-40 minutes. I was getting a bit concerned as I was cutting it fine with travel back to the airport, but I was called in eventually.

The audiologist seemed a bit rushed & distracted, I presumed because they were running late - although I was only their 3rd appointment of the day. As such, I didn't just gush out all my tinnitus woes but instead waited for her to ask me what she wanted to know of my tinnitus experience.

I knew I was going to be passed on to someone else and wasn't sure when I should ask any questions - which I'd forgotten anyway.

The upshot of this was I didn't feel the assessment was terribly thorough. I was in and out within an hour.

 

If you're flying Ryanair, have you got a medical exemption letter from them to carry the device on board? With their reputation, I imagine they'd be only too happy to hit you for fees to carry it without agreeing it in advance - maybe even insist on it in the hold.

https://www.ryanair.com/gb/en/useful-info/special-assistance/the-carriage-of-medical-equipment

 

I posted a while ago with details of buses from the airport to the city centre and from there out to their clinic, but someone on the BTA forum dug up a miles easier option.

https://airporthopper.ie/

€10 return from the airport and there are 2 bus stops about 10 minutes walk away from Neuromod, one before their clinic, one after it. The bus actually goes right past the entrance to the hospital grounds. There's even a decent pub on the walk from the first bus stop.

 

My masking level will vary depending on the day. I have moderate days (maskable) and severe days (very hard to mask, which seems to be an exclusion criteria). How do they solve that?

 

That's not what is being said. What Redknight is saying and I agree with is that if you go in there and you're a basket case and you say to them:

'I haven't slept in weeks; I'm suicidal; depressed and suffering extreme anxiety everyday. Please help me Neuromod, you're my only hope,' you'll get knocked back.

But if you go in and say:

'I sleep alright, sometimes well, sometimes not so well. Sure this gets me down sometimes, who wouldn't get down with this screaming in your head every single day sometimes but I was always prone to low mood anyway. I appreciate it doesn't work for everyone,' it'll be fine.

Nope. It'll be in my hand luggage, so it'll go through the scanner.

 

"Quite a few were seeing progressing results but returned to baseline after the trial ended and wished they could have continued using it."

This suggests the results may not last, unfortunately. Not that I would mind having to repeat the treatment periodically, but it contradicts Neuromod's hype.

 

Where is this quote from?

 

I think it's pointless having any kind of bias pro or negative about the trial, about Neuromod or the device. It's all pointless speculation. Just let the facts speak for themselves in time. Patience is a virtue guys, time reveals all.