Q&A: Tinnitus Hub Meets Neuromod (Lenire)

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If this treatment does work and the tinnitus does subside and/or goes away, it's still not a cure, correct? So will our ears continue to be compromised?
The device supposedly treats only the symptom of tinnitus. Your ears will still be damaged. Anyway, when you feel your internal noises at a lower volume, it will give you the sensation that you are able to listen to things better (I suppose).
 
I didn't have the pain at the same time, no. Just the noise was so unbearable, it was actually quite strange at the time thinking back on it. It doesn't bother me at all now.
Ties in with Neuromod's findings on success being related to hyperacusis........

Still disappointing that we don't have more Clare's knocking around here. Where are the rest of the misfortune 500??
 
Ties in with Neuromod's findings on success being related to hyperacusis........

Still disappointing that we don't have more Clare's knocking around here. Where are the rest of the misfortune 500??
As Clare said she had to sign an NDA, which I assume the rest of them did as well.

They prob don't want to write anything about it until their NDA clears. In Clare's original post she even mentioned "I hope I'm not breaking the rules", which leads me to think this.

Hopefully once the device has been released their NDAs will end and we will see more responses.
 
As Clare said she had to sign an NDA, which I assume the rest of them did as well.

They prob don't want to write anything about it until their NDA clears. In Clare's original post she even mentioned "I hope I'm not breaking the rules", which leads me to think this.

Hopefully once the device has been released their NDAs will end and we will see more responses.
The reality is it's all speculation anyway. The only way to know is to buy the thing and hope to dear God it does something.....This forum is going to blow up once people have it on their tongues me thinks.
 
Ties in with Neuromod's findings on success being related to hyperacusis........

Still disappointing that we don't have more Clare's knocking around here. Where are the rest of the misfortune 500??
I've had two bad setbacks/increases in volume in the past couple of months and I must say I'm really clinging to this right now. The only bit of good news I've seen recently is this hyperacusis link, because my tinnitus is totally intertwined with the hyperacusis ... the fact that I may actually be an ideal candidate for MuteButton seems too good to be true. Sure hope it isn't.

Barring a big surprise I will absolutely fly to Ireland and set this up the first second it's available.
 
The device supposedly treats only the symptom of tinnitus. Your ears will still be damaged. Anyway, when you feel your internal noises at a lower volume, it will give you the sensation that you are able to listen to things better (I suppose).
That is what I thought. I just wanted to double check :) I will take any volume reduction!
 
Ties in with Neuromod's findings on success being related to hyperacusis........

Still disappointing that we don't have more Clare's knocking around here. Where are the rest of the misfortune 500??
I really don't know where everyone else is but I did search out somewhere to connect with people who could relate to what I was going through at the time.

I'm also making the assumption that maybe many of the other participants were older and possibly not online as much!

Also we were told not to discuss the trial in forums while the trial was ongoing, so maybe they just thought that was - don't discuss it ever! Or maybe I'm the one who got it wrong and I shouldn't be discussing it! Hmm...

Anyway, Happy New Year to everyone! Here's hoping it will be a better year for all of you and hope is on the horizon for a quieter 2019.
 
Still disappointing that we don't have more Clare's knocking around here. Where are the rest of the misfortune 500??
People who post in forums are really only a small percentage of the internet, especially these days where fewer and fewer people venture beyond Facebook and Twitter.

The opening of the Neuromod Facebook page might cause some testimonials to show up there.
 
The device supposedly treats only the symptom of tinnitus. Your ears will still be damaged. Anyway, when you feel your internal noises at a lower volume, it will give you the sensation that you are able to listen to things better (I suppose).
Damaged like someone with hearing loss but no tinnitus?

Genuinely curious about this.
 
@Clare B, when they set the device up for you, did they do a hearing test beyond 8000Hz? Also, what was the duration you used the device for each day?

Thanks for your time!
 
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Listed below are the individual questions.
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  1. Does Neuromod have any financial relation to Tinnitus Talk?

Just a very quick comment about the question someone asked about a financial relationship between Neuromod and Tinnitus Talk. I was really glad to see in the video that Tinnitus Talk doesn't have one with Neuromod!! The question is quite understandably treated humorously in the video, but actually this is a very significant and serious issue with medical devices. I've done a lot of campaigning round this issue after being harmed by a device. The issue of device regulation is suddenly receiving far more coverage as part of a new worldwide investigation. The UK partners in this are the Guardian, the BBC and the BMJ.

https://www.icij.org/investigations/implant-files/

https://www.theguardian.com/society/series/the-implant-files

https://www.bbc.co.uk/programmes/b0btjr55

The larger companies will often conduct marketing campaigns that involve payments to consultant doctors and increasingly sometimes to patient groups as well!

This article sums up the situation quite well as it happened for robotic surgery - until recently most robots were made by Intuitive surgery. a model called Da Vinci. Intuitive/Da Vinci courted not only doctors, but also made payments to e.g. a popular forum where women discussed hysterectomy surgery. The article explains how one woman partly based her decision to have hysterectomy surgery with a Da Vinci robot on the fact that no one on the hysterectomy patient forum seemed to have had problems with it and plenty had good experiences. She did not realise they the forum was receiving money from Intuitive Surgical who make the Da Vinci robot. When she posted about her own negative experience, her post was removed, suggesting that this might have happened before with similar negative experiences.

https://www.healthnewsreview.org/20...-match-many-hysterectomy-patients-experiences.

The Bleeding Edge documentary on Netflix explains some of these types of practices quite well - features a woman who initially had a good experience with the Essure contraceptive device and was then engaged by the company to speak about her good experiences.

The campaign group I am in were offered money from a device manufacturer and turned it down - independence is gold dust and to sell it would be to sell the credibility built up through 1000s and 1000s of hours of hard work in our free time.

Just felt moved to post that as there's so little knowledge about the level of marketing that goes on with devices. HOWEVER I get the very strong impression that the offenders are more likely to be the large, extremely rich device manufacturers - Neuromod appear to be quite a small company from their website and I hope would not go in for these practices. If their device works for tinnitus there will be no need, it will sell itself!

I look forward to seeing the first published clinical trial on the device.

And also, many medical devices are implantable in the body or used in surgery making them inherently more dangerous that this devices sounds like it could be.

Of course even if Neuromod are doing what many device companies do to market the device, it does not mean it won't work, it's just... industry money is so pervasive in medicine now, people have no idea how valuable independence is.
 
Or maybe I'm the one who got it wrong and I shouldn't be discussing it! Hmm...
Yeah I can see Neuromod being really pissed at you @Clare B!! Your testimony has only made them about a million quids worth of sales straight off the bat. Trust me they all adore you. Susan Shore will probably be in touch in a year or two to check if she can maybe cure you for a second time.
 
Ah this wait is killing me. Can't wait for Facebook updates, or Tweets, or a release date, or the release of the study, or ANYTHING from Neuromod. I have the money for the plane ticket and the device squared away. I'm from the EU so there shouldn't be any problems getting into and out of Ireland with the device.

Although waiting for something that actually seems legit is infinitely better than whistling in the total darkness that we had before 2018...
 
Not sure if this is going to work for people with hearing loss above 8 kHz.
Well, I can tell you for a fact that 99.99999% of all people in the world over the age of 3 months have some kind of hearing loss above 8 kHz. And the percentile for tinnitus sufferers (at least noise induced) is probably higher.
 
Anyway, Happy New Year to everyone! Here's hoping it will be a better year for all of you and hope is on the horizon for a quieter 2019.
Thanks for all the information you have added to this thread, I think many people are very interested and look forward to neuroplasticity healing treatments. And for more info from Neuromod.

Happy new year to you Claire. Thank for you for answering everyone's questions, Your posts will have helped many people.

I hope 2019 is even better for you.
 
@Clare B, when they set the device up for you, did they do a hearing test beyond 8000Hz? Also, what was the duration you used the device for each day?

Thanks for your time!
I honestly don't know if they did a hearing test beyond 8000 Hz, they didn't go into detail like that. The audiologist just said my hearing was perfect and I was consistent in my test results.

The required duration for using the device was two 30 minute sessions. I used it early in the morning and in the evening, but you could use it whenever you liked during the day just as long as you met the time requirement.
 
Did they test frequencies above 8 kHz? If they did, then they used two different headphones, so you might remember that?
I don't know about the frequencies. I only remember being in the booth with the one set of headphones, they didn't ask me to change them at any point. I had a button to push when I heard the sounds.

They also got me to match the tone and loudness of the tinnitus with the tones they played in the headphones. They played a tone and asked if I could hear my tinnitus anymore.

Sorry I don't know the technical details!
 
Yeah I can see Neuromod being really pissed at you @Clare B!! Your testimony has only made them about a million quids worth of sales straight off the bat. Trust me they all adore you. Susan Shore will probably be in touch in a year or two to check if she can maybe cure you for a second time.
Ha yeah, you might think that. I really don't want to make anyone any money. I really just want this to work for other people too and that I'm not just some kind of weird anomaly.

I'd definitely be knocking on their door pronto if it ever came back!
 
With all due respect Clare, you might know what it's like to have tinnitus, but that's not the same as suffering from tinnitus.

The criteria they applied for the trial excluded anyone with a THI score of 71+, so it's probable you have 'moderate' tinnitus at worst - whereas most of the desperate people on this forum, including me, are battling against 'severe' or even 'catastrophic' tinnitus.

I'm grateful for you coming on here to share your experiences, but I fear you're going to be interrogated relentlessly, as you're the first to put your head above the parapet.
Man, you are not a nice person. The girl is only sharing her feedback and has said numerous times she doesn't know if it's a solution for all. Yet you come along and provide such a negative response.

Also, I think it's absolutely ridiculous you're going on like 'Oh no one's tinnitus is worse than mine!'. You have no idea what her tinnitus was like. She already stated it affected her life, that is enough, why else would she do the trial otherwise and travel across country (which is true by the way as I too applied for the trial but didn't qualify and I know the trials were in Dublin).

I suggest you hold your tongue and maybe try and change that negative attitude you have. It will get you nowhere.
 
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