Q&A: Tinnitus Hub Meets Neuromod (Lenire)
- Thread starter Tinnitus Talk
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Yes, I contacted them, they don't provide any info. They just say 'in the future'.
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I'll contact Neuromod next week. See if I can get some info on a date. May swing by the office.
Damn right. Us Irish stick together. More respect please. She is doing a huge courtesy to this board by being on here.
I like this idea. They can't send you a non committal tweet if you are standing in their office.
- May 29, 2018
- 1,161
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- Neck/stress
I'm thinking we can expect an announcement on release and pricing to coincide with Tinnitus Week. More press and interest etc. And then available in summer, autumn.
If they are already sitting on inventory for the device. I do not see why this would not be released in the first question. Most likely a software update to already built hardware. Pretty simple upgrade really.
I wrote them on Facebook but got a standard reply (I guess). They have no definitive date set but hope to roll out in 2019... so I don't think it'll come out too soon.
Several of the Tinnitus Talk admins said that, based on earlier correspondence with Neuromod, but it's not in the video itself - hence the present confusion about the exact release date.
But if you ask me, Neuromod is showing all signs of a company nearing a product release. They have reams of slick marketing materials prepared (website, testimonials, brochures), they have regulatory approval, the product appears to be finalized, they publicly and exhaustively answer questions about it etc. Let them wake up from their New Year hangovers and we'll soon know more.
FounderI believe Neuromod stated January Ireland launch at the Talking Tinnitus conference/expo back in September 2018.
David from BTA also wrote the following back in November 2018:
Source: https://www.tinnitustalk.com/threads/british-academy-of-audiology-baa-—-2018-conference.32279/#post-387059
I am so glad you said this, I thought it would be very tactless to ask you whether as one of the early brilliant success stories you were officially employed by the company at all, I know it sounds crazy but this actually does happen quite a lot for other devices, for example as mentioned for the Essure contraceptive Device. A tinnitus treatment that actually worked would not have to resort to the same kind of marketing tactics as a company marketing a surgical contraceptive device, because it would not have the same well evidenced pre-existing low risk competition in the market. This thing is going to sell even if there is only a 10% chance of it helping people!
Clare you are a wonderful and kind person to come back and give so many people here hope out of the goodness of your heart, it must be wonderful to have silence again.
Like others I wondered where the other success stories from your trial are. But it's not super surprising for you to be the only one on a forum even if there have been others, because when people get better they tend to go about their lives and try to forget their illness, by and large.
From what I understand there was some kind of initial clinical trial that has completed prior to the current larger clinical trial? - not sure which one you were in. But I do wish they would publish that initial one, even if they only have a success rate of 10% above placebo for tinnitus that still would be very significant, amd better marketing than the usual methods.
Thanks for your reply!
I'm just thinking out loud here... but it's quite interesting that you did not have any hearing loss but the MuteButton people claim that the device is setup/tailored according to the patient's hearing test. So in the case of the patient not having any noticeable hearing loss below 8kHz, how is it then setup? Is there a "no-hearing-loss" -setup? And since the test is not done above 8Khz, are hearing loss and tinnitus frequencies at higher levels "automatically" covered when doing a sub-8Khz setup of the device?
One more question for you @Clare B - I think you wrote it in one of your earlier posts, but I forgot; what type of noise was your tinnitus? Was it a very high pitched/hissing sound? Or was it a tonal sound that you could easily match up to a frequency-note?
Thanks again!
It's no problem at all. It doesn't take too long and if it helps a single person in any way it's definitely worth it.
Thank you so much, what a lovely thing to say. I really hope it works for others too. It would be wonderful!
- May 11, 2016
- 1,184
- Tinnitus Since
- 2012
- Cause of Tinnitus
- Loud music/gigs probably
Maybe it's still set to the audiogram that was taken. Hearing loss is only so when it is greater than 20 dB so even if the audiogram is mostly 5-10 dB it can still be set to that.
- Dec 19, 2018
- 108
- Tinnitus Since
- 10/2018
- Cause of Tinnitus
- ETD possibly, or neck and jaw, or maybe anxiety?
This also fascinates me a lot. I have "perfect" hearing, and was a little worried about it, until I saw that Clara had perfect hearing as well. I'm almost certain it really is just hyperactive nerves in the DCN, so if that's the case, this device would make a ton of sense in lowering people's perception of tinnitus. I doubt it will hit the United States until 2020, but I'm thankful there are people out there who truly care about this condition. It's refreshing that there are also people like @Clare B who are willing to come back and give hope.
Wow, I guess I'm pretty naive, that never even entered my head that companies would do that. Nope, definitely not an employee, in the past or present (or future)! I have to say though, everyone I came into contact with during the trial (all the employees etc) were very professional and kind.
It is wonderful to have silence again! (Understatement of the century!) Although sometimes I am a little afraid to listen to the silence for too long just in case I hear something again!
I agree, when people get better they tend to get on with their lives and want to forget about their illness. I had moved on already too, like I mentioned before it was only when that video interview came into my inbox and I was momentarily curious about the technology and research that it led me back here. I wasn't expecting to be staying this long but I have a different feeling here now, I'm no longer searching for something to help myself anymore. So, the very least I can do is come back here and spend a few minutes answering some questions or giving feedback, if it can help in any way.
I wasn't in the earlier trial, I was in one of the later trials, 2016/2017. I really thought they were bringing the device to market fairly soon after the trial. When I received the device, I thought it looked very sleek (white and 'Mac' like!), the headphones were comfy to use, I really thought it was a finished product. I wasn't really thinking about when they were going to be selling this, I was thinking 'man, I really hope this works'...
Thanks for your kind comments! : )
No problem. Yes, I agree, I do think it's interesting I did not have any hearing loss. I keep reading that most tinnitus is linked with hearing loss or damage. I really don't know. Okay, so they set the device up by matching the tone of my tinnitus as closely as possible to a tone they played. While I was in the hearing test booth, they also matched the loudness of the tinnitus to a tone, as in when I couldn't hear it anymore. This took a while. I used to close my eyes in the booth to really concentrate on the sounds and get everything as accurate as possible. I'm not sure about higher level frequencies.
My tinnitus was only in my right ear. It was like a beep, so I guess that would be described as tonal. It was a bit like Morse code. I would describe it almost like the beeps you would hear when you pressed the buttons on old mobile phones (not sure you're old enough to remember that!). It had a certain rhythm, the beeps were at a consistent speed. It was ALL the time. It came on gradually, quieter at first and then became louder. For ages I had no idea what it was (or what tinnitus was) and was asking people around me could they hear this beeping, I'm sure they thought I was losing it!
Just one more thing before I head off. I'm not sure if I said already but the device played a whole range of tones, not just the one that matched my tinnitus sound. It didn't play them in a sequence either (as in low to high), it was very varied, high one second, low the next. It wasn't unpleasant to listen to and not loud, just a little boring sometimes but a good opportunity to relax and zone out, while hopefully fixing my tinnitus!
Very interesting. Did they follow you up for 12 months and/or are they still contacting you now for outcome data? A 12 month follow-up is mentioned in the video which would explain some of the delay. Clinical trials not reporting sometimes isn't great news for the overall efficacy… But there can be all sorts of reasons for it.
Also can I check, how long had you had your tinnitus for before you first used the device?
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