Sorry, didn't mean to confuse you. I presumed because they tested the loudness and tone of my tinnitus (my tinnitus was in my right ear and they were playing a matching tone in my left ear) in the hearing test booth that they would have used that information when setting up the device for me. I don't know that for a fact. I can only give you the details of my experience from my perspective, I can't give you the technical info, that I don't really know or understand.
Q&A: Tinnitus Hub Meets Neuromod (Lenire)
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Sorry, didn't mean to confuse you. I presumed because they tested the loudness and tone of my tinnitus (my tinnitus was in my right ear and they were playing a matching tone in my left ear) in the hearing test booth that they would have used that information when setting up the device for me. I don't know that for a fact. I can only give you the details of my experience from my perspective, I can't give you the technical info, that I don't really know or understand.
My tinnitus was non-somatic. Neck or jaw movements had zero effect on it. A physiotherapist tested that with a range of movements on one of the visits during the trial.
Yes, I had tinnitus for one and a half years before the trial. It was exactly the same that whole time, there all the time, the tone was always the same, loudness could vary for a few days when I was stressed etc. I had zero quiet days. I had no improvement at all before using the device. I used the device for the 12 weeks.
Nearing the end of the time period of using the device I had some fluctuation in my tinnitus that I hadn't had before, some higher pitch sounds, some louder days. It wasn't until shortly after the end of the trial that I noticed the tinnitus quietening and having my very first day of silence for a very long time, then it came back and went away again. It was very gradual, I didn't just wake up one morning and it was completely gone, not at all. It just gradually tapered off and then went for good.
So I'm a solid year without tinnitus. I cannot say that it was definitely the device, I can't possibly know that 100% for sure. I believe it did have an effect, the timing is too much of a coincidence.
I wasn't having any other treatment, taking any weird supplements, doing any alternative therapies at that time. The only other thing that changed in my life at the time was that we got a cute but noisy puppy, (Collie cross) with a lot of energy. His barking was the only other change in my environment.
Member- May 29, 2018
- 1,161
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- Neck/stress
Sorry Clare. Wasn't trying to play down your tinnitus. I meant it wasn't a constant screech or hissy ring like some of us have. From memory you said it was more an intermitttent 'morse code' beep.
I really do wonder if it didn't just run its course. I would be very intrigued to see how this device works on some severe cases. Shame Neuromod don't have the inclination to take a dozen people off here who are straight up suicidal and really test this thing to the limit.
So true Bam!
Why not try help those most desperate who are truly in need of any relief.
Maybe we should contact Neuromod with this suggestion or have you already done that?
Maybe we should start getting used to words: my tinnitus is better/gone because I had treatment for it!
Dear Lord please let this be true!
- May 29, 2018
- 1,161
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- Neck/stress
Let's hope so Valeri. Nobody deserves that more than you. I think Neuromod must be aware that this is make or break for some of us. I've not contacted them except to ask about release but they are 100% reading this thread so they know the score.
Bottom line they help the likes of me early in the game then they're going to make an absolute fortune. My worry is they're reading this and doubting their own creation. We'll see I guess. I'll buy it with total faith it will work but I'm also not going to hold back on here with an honest review if it doesn't. Which is why me having one of these could go either way for them.
Personally I think no less than a 50% reduction would be enough to restore some quality of life and keep me alive long term. And that is a big ask I know. But I will shout from the rooftops if they deliver!
Fabrikat
Member
- May 1, 2017
- 416
- Tinnitus Since
- 1973
- Cause of Tinnitus
- Otosclerosis then volume then viral infection
That's what concerns me about their featured testimonials. They don't strike me as particularly hardcore tinnitus cases. I wish they'd featured people who have lost say swathes of hearing with resultant serious tinnitus due to virus, sudden deafness, ototoxicity or perhaps a military vet with weapon induced tinnitus.
I would've liked to then hear them express positive results. Who knows at this stage?
But until a variety of sufferers start reporting positive experiences, I can't help feeling a little skeptical about this device.
At this point I would settle for not waking up everyday like I was in a car crash and am waking for from massive head trauma. I seriously would be ok with a tone running constantly if it was somewhat localized to my ears and not piercing my brain, so in essence I would gladly pay for an improvement and not a cure.
- May 29, 2018
- 1,161
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- Neck/stress
As long as it comes out the sleeve and is the most spectacular monkey in freakin' monkey world we'll be all good.
Their pilot study doesn't have a placebo. I would be very keen to see the results of the 12 month study in which Claire was featured. Hopefully it has a placebo and appropriate controls/data analysis.
Medical device companies do have a bit of a reputation for releasing their devices onto the market without releasing proper clinical trial data, and this is something for which they're being increasingly criticised. Part of the reason for this criticism is underreported harms.
I would like to think that this apparently small company is a lot more ethical and honest and some of the large companies like Johnson and Johnson have been with device development, the person being interviewed in the video did clearly state that some patients got worse which is quite open and honest of him.
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Yes Clare's testimony about the device (probably) leading to her tinnitus going away completely is very encouraging. I was initially skeptical about this device but now feeling cautiously optimistic. However, I do think there is a serious question mark about how effective it will be for severe tinnitus cases. From Clare's testimony other more elderly people on the trial did not get the same benefits and I think the trial excluded participants who had had tinnitus for more than 5 years, so I suspect that sadly some of the people who need an effective treatment most may not be able to benefit from this device.
Non-somatic.
Hoping it also works for somatic tinnitus then, when I move my jaw forward it gets insanely loud in my left ear...
I thought I read somewhere that around 80 percent could modulate their tinnitus with their jaw.
When you tamper with 'nerves' I can't help thinking that there is a potential for further damage to occur.
I would not be overly concerned about this, I think it was clearly stated in the interview that there is no reason to believe that it would not work on people who have it longer than 5 years.
One thing I am concerned about though is that all this is just based on internal and anecdotal reports, very little is known about the methodology, but yes, I am cautiously optimistic.
Hasn't that Susan Shore device only been proven to work on those with somatic tinnitus? - https://news.umich.edu/specially-ti...toms-in-test-aimed-at-condition-s-root-cause/
The prerequisite to be part of the study is to have a somatic component to your tinnitus (whether you can modulate it with facial/jaw/head movements), so by definition, the only results they have pertain to people with "somatic tinnitus" (with the definition above).
That does not mean that those who are excluded from that criteria will not benefit from it. It just means that the mechanism of action hypothesis is such that, to derive the best possible information from a single trial, you have to select the people who are most likely to validate your hypothesis.
Absence of evidence isn't evidence of absence, so those who cannot modulate their tinnitus should not assume that this isn't going to work for them: it's a question mark.
Yes I understood that; didn't explain myself, just trying to say to Bart there's at least one device claiming to work for somatic tinnitus.
I really think that if Neuromod presented results of their study for the people in the trial in December... it means that they will release the device on the market very soon...
@Clare B Are you in touch with anyone else who was part of the trial and could give us feedback on the December conference?
@Clare B Are you in touch with anyone else who was part of the trial and could give us feedback on the December conference?
"the person being interviewed in the video did clearly state that some patients got worse."
I'm a bit concerned about this.
I'm a bit concerned about this.
"Have patients gotten worse? There were a small number of patients who have gotten worse, erm not dramatically, their tinnitus might have gotten, you know, elevated. These patients, they were asked whether they wanted to discontinue the treatment or continue, a lot of them continued. Eh, most of those cases then resolved, so we haven't had any serious adverse events in the study, and eh so we haven't had any very..just very, kind of, yeah well this term "serious adverse events", you know so there aren't any patients we're very very concerned about. And the majority of patients did actually, in patients that, some patients experience some change at the start which is probably to be expected at the start if you are doing something, if you are disrupting this kind of neural processes there is going to be change".
In a way I am encouraged he's discussed this. It is striking a nerve with me as I had a surgery that kicked off my increased spiral of ill health, and before I had it I did loads of research and went by the papers and doctors who said it made no one's condition worse. A few years later the rise of social media showed that to be bollocks. He's not denying it never happens. And it may well be as he implies, mostly temporary. As I say, I would probably want to see the 12 month follow up paper before trying this and the experiences of other patients less concerned than me with risk!
That's okay! : ) It's not impossible that it had run its course but it's also not impossible that the device helped either. It's just impossible to know for sure, until we know the results of others on the trial (if that ever happens) or like you said some people who are really suffering get to test it out.
I'm not in touch with anyone else who was part of the trial. I only got to chat for a few minutes with some of them in the waiting room once and we weren't supposed to talk about the trial!
I did bump into one older guy that was on the trial at the train station (I guess he had to travel across the country too) on one of the days we had an appointment, I chatted to him for a few minutes. I'd say he was in his sixties, he had hearing damage from machinery. He hadn't a whole pile of success at that time, but I can't remember at what stage of the trial that was, I'd only be guessing, it is a while ago now.
No, I don't know anyone that went to the conference.
@Clare B,
First: A huge thank you for being so patient and responsive on this forum. I guess you could just as easily walk away and leave this whole tinnitus thing in the past. Your commitment to answering questions from us who are still in this is much appreciated.
From the Q&A I gather there were three conditions in the trial. One condition was receiving the standard treatment, and two were receiving a treatment that was not expected to help.
Could you tell me, how confident you were in the standard condition? Do you know what condition you were in?
First: A huge thank you for being so patient and responsive on this forum. I guess you could just as easily walk away and leave this whole tinnitus thing in the past. Your commitment to answering questions from us who are still in this is much appreciated.
From the Q&A I gather there were three conditions in the trial. One condition was receiving the standard treatment, and two were receiving a treatment that was not expected to help.
Could you tell me, how confident you were in the standard condition? Do you know what condition you were in?
- Oct 17, 2017
- 641
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- unknown - possibly hereditary
After the trial has finished and peer review published, will Neuromod tell the trial participants what group they were in?
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