Lenire — Bimodal Stimulation Treatment by Neuromod

‘Good question’

 

@Chinmoku are you still going for your appointment?

 

Guys don't count on Hannover.

They seem to not answer, and if they ever answer it's going to be more expensive.

Go to Neuromod and get the real deal.

 

Sorry I missed this one. That's it. I would say "trust" instead of protect, though.

 

I haven't decided yet. I'd like to be off drugs before trying but I'm suffering too much, I need to make a decision shortly.

 

To elaborate more on this, I'd like to offer a list of pros and cons, that typically keep me in analysis/paralysis. Anyone who is willing to reason with me please feel free to advise, we all know that prolonged severe tinnitus robs us of our lucid thinking. On a slightly positive note, my hearing aids have started helping a little now when keeping them on all day, so perhaps I have gained some time from jumping off a cliff. Anyway here goes.

Pros:
1. Only treatment in the market with credible science and results, although results are often underwhelming and don't help all patients.

Spoiler: Success rates?

(Neuromod claims and @threefirefour preliminary analysis point to 70% success but we need more precise data and more details, @UKBloke analysis is quite sobering)

2. Priced reasonably if compared to much more dubious tools and gadgets like DeSyncra, Levo and the likes.
3. The team is responsive and willing to work with the client, there seems to be a good culture.
4. Desperate for relief and in a very bad place, if this can help me I can't afford to let it pass.

Cons:
1. Refusal to publish a paper with the methodology and detailed results, even a preprint.
2. Need to travel to Ireland every time, even for a minor tweak.
3. Severe cases seem to be the ones where the benefit is most marginal, from the leaked scatterplot.
4. Many patients experience temporary worsening, that in case of very severe sufferers can be extremely hard to tolerate and might lead to interrupting the therapy.
5. In my case I should wait to be off drugs completely and also that the effects of the drug recede. I'll jump to zero with Pregabalin tomorrow but resetting my brain might take months or years and it is not clear whether I can tolerate staying off the drug. In this sense it is too early for me to try the treatment.

 

It's too short to make a judgement, I'm only 11 days into the treament.
But my feeling is good. Lenire affects my tinnitus.
I will post my first report 3 weeks in.

Cheers!

 

I just received another follow-up email from Hannover...

 

Got the same email today!

 

Same here.

But I do not plan to attend atm. Of course I want to get rid of this sh... or lower it.
But the success rates are currently too small. Also they could not give me any exact numbers about costs.

Therefore, I don't know yet what I will do.

 

Hm, not me... When did you apply?

 

10th December.

 

I am very afraid of permanent tinnitus worsening. What should I do? Try or not try Lenire?

 

I share the same fear, but tbh it's impossible to answer your question. The only way you will know if Lenire is beneficial to you is to try it. It's a risk you're going to have to take. If you think worsening is worse than the potential benefits, then don't try it.

 

Try not to look at it as all or nothing but just a decision for right now.

The wise thing to do would pass on Lenire right now and wait for more reports to stream in.

In my case, in the US, I can further rationalize the wait by saying it will be a lot cheaper to wait for Lenire to be available in the US rather than having to fly to Ireland several times. I don't know how Lenire got approved in the EU but it sounds like the FDA is more rigorous. So if it gets approved (and the peer review process goes well) I may be able to work through my fears that using it may be like playing Russian Roulette with my ears. That's also far enough downstream that I would expect Neuromod to tweak the device quite a bit. I really don't like that they are using early adopters as guinea pigs but that's how I feel about where things are at present. It's still a highly experimental treatment. Only those who are desperate enough that the prospect of what will probably be only modest gains is worth almost an equal probability of worsening should try it.

I don't think the user experience report pending for April will say anything more positive about Lenire than the existing consensus so that is likely to be quite anticlimactic.

 

I’m currently finding myself at a bit of a crossroad. I’m finally habituating to my tinnitus after it stared early January 2019. Even though it doesn’t seem as loud as it was, I still think it is the same volume since I need to raise my masker to the same volume in order to drown it out. My tinnitus would be classified as the loud type, it sounds like a high pitched hiss/tea kettle/jet engine/dental drill,... I hear it pretty much everywhere except for maybe the shower and not many sounds can mask it, I can be sitting at a restaurant that registers 90dB and I still hear it. With all that being said, it doesn’t bug me anywhere near how it did and I find myself forgetting and thinking about it most of the time.

It used to cause me a lot of anguish and stress. All that is gone and at the most I find myself just annoyed it’s there when I do pay attention to it, usually just in the morning or when I enter a supermarket or large store (for some reason that’s when it seems to get louder maybe due to some white noise present there? —weird, white noise makes it react).

I have an appointment at Neuromod in a couple of weeks and will still go but not entirely sure I’ll go ahead with the treatment. As I see it, I’ll go, let them know where I’m at, and hope they give me their honest opinion as to whether I should pursue the treatment or not. I would of course love to get rid of it or even just lower the volume by half or whatever, but the thought of it increasing or simply being a waist of time and money sucks.

 

What has been useful are people going into the office and asking questions about how patients are doing overall, then coming back here and paraphrasing. We know they aren't going to release official stats but in these one-on-one consultations it looks like they don't feel they can dodge these questions because they are key in deciding whether or not to go ahead. Hearsay or not it would be useful to compare and contrast what they are privately telling patients over time to the evolving dataset of user experiences.

 

The way you describe your tinnitus makes it sound pretty much like mine. I also guess why it spikes in supermarkets, malls and those kind of places.

I also have my appointment next April and feel like not going. Can't afford a worsening.

 

Got it this morning too.

 

My advice in this case is definitely not to try Lenire. We unfortunately now have several examples of people whose tinnitus has significantly worsened after trying Lenire, in some cases with terrible consequences.

 

In hindsight I should have kept my May appointment and not request an earlier one... Just so I could take a longer “wait and see” approach. Oh well!

 

So change your appointment... you are paying them for their service... not a big deal.
Even if you lose money on your flights....peace of mind is a small price to pay.

 

Interestingly the overall improvement rate on the site has dropped to 66%.

 

I thought that was the original rate. Or at least the original rate of people who see significant improvement.

 

It is but according to Neuromod it grew to 70%. I’m still within the margin of error so it is what it is.

 

66% was what was taken from the first trial and it's been the Stat they've thus far officially stuck to. 70% I believe was from the leaked slides of the second trial which was summed up by a poster here at some stage so take that with a grain of salt.

 

I’m definitely contemplating that idea. I’d still go to Dublin to have a few pints of Guinness and tour the country a bit.

Do you know by any chance; when someone goes to the initial appointment for the hearing test etc., how long do they have to decide on whether or not they want to purchase the device and go through with the treatment?

 

I hope someone can answer your question, I haven’t done it yet... I delayed my appointment for scheduling reasons, but I think it is worthwhile to get more data on how effective it is.

 

Once they have green lit you for the treatment that's basically it for the near future. So they might make you take the hearing test again if you delayed it by years but beyond that you've got basically as much time as you like to decide.

 

Totally agree, I'm going to cancel, suffer as I am, and give it a year.