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Lenire — Bimodal Stimulation Treatment by Neuromod

The British Tinnitus Association is not convinced Lenire is effective.

https://www.tinnitus.org.uk/tinnitus-and-lenire
Not at this point. There's need for independent studies and data from peer review. They've stated it as such on their website. Hopefully Neuromod is feeling some pressure to come up with data if they aren't feeling it already.
 
Thanks very much, threefirefour:

Question: How can Levo get a B rating and Lenire a C- when Levo uses only sound modulation and Lenire uses the same sound modulation with added electrical stimulation?
 
Funny how Lenire is somehow "not effective" yet LEVO has fewer papers published on its efficacy and much less data but gets almost 2 letter grades higher.
Because they had *some* independent studies. That's better than Lenire at this point in time.

But: Lenire can just work and science then has to prove it does and maybe even come up with a reason why.

Neuromod was reassured enough by its own trials to go to market. They know full well they'll have to face the consequences at some point.

Elon Musk does this all the time and sometimes he delivers and sometimes he doesn't. Still it's not an uncommon thing to do in this day and age.

Did Neuromod launch because they wanted a treatment out there as soon as possible because they feel for us? Or was it a Ben-Hur scenario where they invested all they had and hope for the best? As for that we can only speculate.
 
Question: How can Levo get a B rating and Lenire a C- when Levo uses only sound modulation and Lenire uses the same sound modulation with added electrical stimulation?
The ratings are used for all treatments whether it are devices, pills, psychological treatments, ...
Also, complicated doesn't mean better.

O'Neill: Let's add lasers!
Rest of the board: Why, it doesn't make a difference!
O'Neill: Okay then. But the Bluetooth headset stays!
 
@PeterPan would you try Lenire yourself if you had the opportunity?
We should see the results of the Lenire User Experience Group surveys in about 4 months. I think the forum will find the results quite interesting and the results should help members make a decision on purchase or otherwise. It will also help people to determine if they have the characteristics which will improve the likelihood of success.

As far as personal opinion goes, I'll let the numbers speak for themselves!

Also, once again, I'd like to thank the members participating in the study.
 
Same here. No reply.
For the Germans:

Vielen Dank für Ihr Interesse an unserer Dienstleistung.

Leider können wir Ihre Anfrage zum jetzigen Zeitpunkt noch nicht beantworten, da unser Büro erst ab dem 01.02.2020 eröffnet wird.

Wir werden uns dann umgehend bei Ihnen melden!
Ihr HörSys-Team

Thank you very much for your interest in our service.

Unfortunately we cannot answer your inquiry at the present time yet, since our office is opened starting from 01.02.2020.

We will then contact you immediately!
Your HörSys-Team
 
Week 6 update.

Writing this actually right from Neuromod's waiting room, where I just had my first follow-up appointment. :)

The tinnitus has gotten quieter. It varies day to day but I get an anomalously high number of quiet days, and I often don't hear it in environments where I heard it before.

Strikingly, it has also gotten a lot less reactive. We had our office Christmas party a few days ago. I monitored the noise level constantly; it was around 75-80 decibels, so fairly noisy, but not dangerous, so I didn't use ear protection. I drank a lot, and shouted myself hoarse during karaoke. Previously, this would have earned me a huge temporary spike. This time, not a thing. It stayed at baseline, and the improved quieter baseline at that. Is this how normal people's ears behave during a party?

Finally, the numbers. Minimum masking level both at the first appointment and at the second (device fitting) appointment was 10 dB. Now it is 6 dB.

Lenire works. I have had mostly unchanged tinnitus for all my 31 years so this'll be my quietest Christmas ever. :) Wishing all of you a "Silent Night" for this holiday season!

View attachment 33891
Thanks for sharing -- especially the part about it helping the reactivity, because so far there's been NOTHING that helps that. I hope they make it to the US soon. I'm considering going to Germany...
 
For the Germans:

Vielen Dank für Ihr Interesse an unserer Dienstleistung.

Leider können wir Ihre Anfrage zum jetzigen Zeitpunkt noch nicht beantworten, da unser Büro erst ab dem 01.02.2020 eröffnet wird.

Wir werden uns dann umgehend bei Ihnen melden!
Ihr HörSys-Team

Thank you very much for your interest in our service.

Unfortunately we cannot answer your inquiry at the present time yet, since our office is opened starting from 01.02.2020.

We will then contact you immediately!
Your HörSys-Team
As if they don't already know the costs...
 
Susan Shore is placing electrodes on points of the face and neck that affect the somatic element on an individual's tinnitus. I'm curious if anyone who has tried Lenire has somatic tinnitus that can be affected by moving or sticking out their tongue and what the results have been. Or Perhaps even results for somatic patients in general.
 
I applied back in the summer and haven't got an appointment yet. People are getting May 2020 appointments so I wonder how long until I am contacted. Surely the demand isn't so high that it could take a year for me to get an appointment. Anyone got any tips on how to get Neuromod to offer me a date? No response to my emails.
 
Thanks for sharing -- especially the part about it helping the reactivity, because so far there's been NOTHING that helps that. I hope they make it to the US soon. I'm considering going to Germany...
I just tried that again. I was at a shisha place with a comfortable but noisy soundscape for two hours and again, no reactivity. It's doing wonders for my mental health.
 
I applied back in the summer and haven't got an appointment yet. People are getting May 2020 appointments so I wonder how long until I am contacted. Surely the demand isn't so high that it could take a year for me to get an appointment. Anyone got any tips on how to get Neuromod to offer me a date? No response to my emails.
I asked Ciara (she's doing the device fittings) on Tuesday and she said that 1. they switched to 5 days a week in the Ireland clinic 2. opened up the German clinic 3. are working through the waitlist but 4. the waitlist is insane. That's the best info available I'm afraid.

Across the 4 appointments they spend roughly 4 hours in total with each patient; they process 3 people simultaneously at most (one patient in audiology, one in device fitting, one doing admin stuff).
52 weeks with 40 hours each give you 2080 working hours per year; because 3 people go simultaneously, that's 6240 patient-hours per year; divided by 4, they can serve roughly 1500 people in each clinic per year. Two clinics gives them 3000 slots per year in total.

I'd wager they easily have 5-10K people on the waitlist. Unfortunately that can easily mean a wait of over a year.

They do have cancellations, though, so maybe if you keep pestering them they can get you in early if someone cancels.
 
Anyone on Tinnitus Talk doing Lenire and taking benzodiazepines daily? I would like to know if taking this type of medication potentially disqualifies from being eligible for Lenire. Or, if it doesn't disqualify, if the medication makes Lenire less effective. I have sent an email to Neuromod asking about this, anyway. We may know the answer soon.
Hi Acute,

Neuromod are the only people that give you a straight answer on this, but based on my experiences with them, I would guess that they would want to wait until you were off the benzos before agreeing to take you on as a patient.

I haven't seen anything in any of the literature / online chatter etc that medication has any effect, positive or negative, on the efficacy of their treatment, but I think they would want to know that there was a secure base for the treatment to build on if that makes sense.

If you haven't had already had an answer to your question from them directly, I'd bet they'll say they need to assess you in clinic before giving you a decision on this. But then if you go, I'd bet they'll knock you back.
 
Just registered (after three years of failed attempts) to say I was given an April 2020 appointment only to be rejected when I told them (backed by an audiogram) that I have >40 dB hearing loss. Below is their response and threshold diagram.

"Currently we can only configure the device for patients with certain hearing levels and as you have a lot of hearing in the low frequencies, configuring a device at this level would become dangerous and may damage your hearing even more. Please see the diagram below on the hearing thresholds. We are working on future developments such as calibrating the device to work with hearing aids and cochlear implants but that is only in the pipeline and is for the future."​

47D42117-2E86-4431-BB07-41126509A73B.png


Sucks, but they are leaving a window of hope for the future.
 
Just registered (after three years of failed attempts) to say I was given an April 2020 appointment only to be rejected when I told them (backed by an audiogram) that I have >40 dB hearing loss. Below is their response and threshold diagram.

"Currently we can only configure the device for patients with certain hearing levels and as you have a lot of hearing in the low frequencies, configuring a device at this level would become dangerous and may damage your hearing even more. Please see the diagram below on the hearing thresholds. We are working on future developments such as calibrating the device to work with hearing aids and cochlear implants but that is only in the pipeline and is for the future."​

View attachment 33975

Sucks, but they are leaving a window of hope for the future.
Hearing loss regeneration drugs are in the works, hang on.
 
Hearing loss regeneration drugs are in the works, hang on.
Thanks.

I am a bit of a weird case because of otosclerosis and a "successful" surgery on one ear. Now I have super hearing on one ear and practically deaf the other one... which probably means I am in between worlds as any therapy/drug won't fit both ears (I could go for a surgery for the other ear but that scares the bejesus out of me. A surgery that has 60%+ chance of silencing tinnitus along with solving the hearing problems has since gifted me countless baseline increases on both ears...)

Some good news, Thursday 23/4/2020 @ 9.15am is now free!
 
@ruud1boy
Hi! Thank you very much for your review, I'm sorry Lenire hasn't helped you much until now,
but hopefully it will be more effective in the future.

Could you shortly describe your tinnitus? Head / Ears, can you modulate it with your jaw? How does it sound?

Just to get more hints for who it might work.

Thanks a lot! :)
 
Hi Acute,

Neuromod are the only people that give you a straight answer on this, but based on my experiences with them, I would guess that they would want to wait until you were off the benzos before agreeing to take you on as a patient.
Hi @ruud1boy. Thank you very much for your comments.

Did they tell you anything about the use of benzos or other medications while doing Lenire? I think that @Krolo is taking antidepressants and also doing Lenire.
I'd bet they'll say they need to assess you in clinic before giving you a decision on this. But then if you go, I'd bet they'll knock you back.
Sorry for my poor understanding of English. Do you mean that if I go to the clinic for the assessment, they may reject me from getting Lenire?

Thank you.

P.S. Neuromod have not responded to my email yet.
 
I don't get how they can't just turn the volume up, sounds like litigation garbage to me. If you are on the 80 dB level you are already severely deaf in that range.
 
Ok, guys, I feel like I have to ask.

In the last 24 hours, I've become obsessed with fear that I'm going to be rejected by Neuromod when I go to my appointment in February. The ONLY reason I can think of for them to reject me is because I'm on some drugs. I take two things, Circadin (Melantonin) and Olanzapine (Zyprexa). Olanzapine is a kind of anti-psychotic drug that's used to treat stuff like schizophrenia, however I'm obviously not schizophrenic. In lower dosage it can be used to treat depression and even to help you sleep (which is the only reason I take them).

I've been looking around on Google to find out if Olanzapine counts as a benzo, but I can't seem to find anything conclusive. Does anyone have any idea about this? I don't have hearing loss and my hearing is quite amazing to be honest, so I'm not worried about that. Contacting Neuromod at this point seems meaningless, since it's Friday and the weekend before Christmas.

Could anyone calm my nerves a little here? Or at least give me a heads up if I should quit Olanzapine before I go to Dublin?
 
Ok, guys, I feel like I have to ask.

In the last 24 hours, I've become obsessed with fear that I'm going to be rejected by Neuromod when I go to my appointment in February. The ONLY reason I can think of for them to reject me is because I'm on some drugs. I take two things, Circadin (Melantonin) and Olanzapine (Zyprexa). Olanzapine is a kind of anti-psychotic drug that's used to treat stuff like schizophrenia, however I'm obviously not schizophrenic. In lower dosage it can be used to treat depression and even to help you sleep (which is the only reason I take them).

I've been looking around on Google to find out if Olanzapine counts as a benzo, but I can't seem to find anything conclusive. Does anyone have any idea about this? I don't have hearing loss and my hearing is quite amazing to be honest, so I'm not worried about that. Contacting Neuromod at this point seems meaningless, since it's Friday and the weekend before Christmas.

Could anyone calm my nerves a little here? Or at least give me a heads up if I should quit Olanzapine before I go to Dublin?
You don't have to tell them you're on medication. Why would you want to tell them? Just shut your mouth.
 
You don't have to tell them you're on medication. Why would you want to tell them? Just shut your mouth.
You know what, I might do just that.
 
@Lurius Could you not talk to your general practitioner and ask about lowering your dosage further or tapering off for the duration of Lenire treatment?

Yes you could probably fool Neuromod and tell them you're not taking anything. I'd be much more worried about spending 2000 euros and the possibility that your medication could interfere with your treatment.
 
This is a really big dilemma for me. I don't want to lie, but I can't be rejected. That CAN'T happen. I don't mean to sound melodramatic, but I've already decided that if I'm rejected, I'm going to kill myself. All the eggs are in the same Lenire basket.

Aren't there any other Lenire users who are on drugs as well? Just so I know that it's not an exclusion criteria.
 

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