MemberHuh? To have hearing loss means that it has been lost, which means that at one time you had it, therefore someone has to not have lost it yet.
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- Thread starter Jim
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Now to reset the mood of this thread, let's recap some basic stuff!
Three members on here (@linearb, @Clare B and @kelpiemsp) have been treated with various forms of bimodal machines and all three report significant or even total elimination of tinnitus. Other members have tried manufacturing their own bimodal devices and they also reported changes (not always beneficial, but they did confirm that bimodal neuromodulation does affect tinnitus).
Neuromod has performed trials on over 500 patients, the first of which, done on roughly 300 people, reported clinically significant improvements on 66% of patients and some improvement on 80%. (Results of the second batch are pending, but leaks state that they were at least as good as the first batch.) Other teams, notably the Universities of Michigan and Minnesota, work on similar devices (derived from a common theoretical basis) and these teams also report success on humans and other mammals.
The device is mostly software and so theoretically it will be possible to update and improve it as we learn more about timings, noise patterns and so on.
The device is reported to work regardless of whether you can modulate your tinnitus with bodily movements or not; whether it is one-sided or not; one tone or multiple; pure tones or beeps, Morse code etc.
The device is scheduled for a 2019 release in Europe and 2020 release in the US, with more specific dates not yet known. It will probably be called Lenire, the European trademark for which is scheduled to be granted early May.
Regardless of the sour mood of the past few pages, the first tinnitus noise reduction device properly validated through 10+ years of science done in several research labs on humans and other mammals is arriving in months. We have been let down earlier. This time, it seems to be solider than ever before. There are no guarantees, but there is serious reason to hope for meaningful reduction of our suffering in the immediate future.
Three members on here (@linearb, @Clare B and @kelpiemsp) have been treated with various forms of bimodal machines and all three report significant or even total elimination of tinnitus. Other members have tried manufacturing their own bimodal devices and they also reported changes (not always beneficial, but they did confirm that bimodal neuromodulation does affect tinnitus).
Neuromod has performed trials on over 500 patients, the first of which, done on roughly 300 people, reported clinically significant improvements on 66% of patients and some improvement on 80%. (Results of the second batch are pending, but leaks state that they were at least as good as the first batch.) Other teams, notably the Universities of Michigan and Minnesota, work on similar devices (derived from a common theoretical basis) and these teams also report success on humans and other mammals.
The device is mostly software and so theoretically it will be possible to update and improve it as we learn more about timings, noise patterns and so on.
The device is reported to work regardless of whether you can modulate your tinnitus with bodily movements or not; whether it is one-sided or not; one tone or multiple; pure tones or beeps, Morse code etc.
The device is scheduled for a 2019 release in Europe and 2020 release in the US, with more specific dates not yet known. It will probably be called Lenire, the European trademark for which is scheduled to be granted early May.
Regardless of the sour mood of the past few pages, the first tinnitus noise reduction device properly validated through 10+ years of science done in several research labs on humans and other mammals is arriving in months. We have been let down earlier. This time, it seems to be solider than ever before. There are no guarantees, but there is serious reason to hope for meaningful reduction of our suffering in the immediate future.
- Mar 1, 2018
- 871
- Tinnitus Since
- birth/ recent spike 2/2018
- Cause of Tinnitus
- Born with ETD, several acoustic traumas, most recently ETD
Statement still stands. Are you confused? Babies (with the exception of those born death) can hear up to 20khz.
And then everyday you are alive, your hearing slowly deteriorates.
- Mar 1, 2018
- 871
- Tinnitus Since
- birth/ recent spike 2/2018
- Cause of Tinnitus
- Born with ETD, several acoustic traumas, most recently ETD
Baby is born with good ears. As baby gets older, hearing ability decreases. By the time baby becomes adult (usually 18 years), most hearing above 16khz is lost. Is that easier for you to understand?
I think what John is saying is different than what you are saying. You both are correct, you with the general aging of hearing loss years at a time. But there's a difference between it naturally happening where your brain doesn't panic from the lack of output, because it's being eased into it, and it being snatched away from you which causes alarm to your brain.
Unless I'm just wrong and reading into the discussion. Lol.
Drone Draper
Member
- Mar 1, 2018
- 871
- Tinnitus Since
- birth/ recent spike 2/2018
- Cause of Tinnitus
- Born with ETD, several acoustic traumas, most recently ETD
I don't think John is saying that, because I would absolutely agree. John is just being pedantic about my writing style. If you read it exactly, it doesn't add up like a math problem. I believe in writing and communicating minimally. 90% of the interpretation is "between the lines". People that are literal (nothing wrong with it), tend to not like this communication style. John is just pointing this out to me.
- Apr 15, 2017
- 1,419
- Tinnitus Since
- 2008
- Cause of Tinnitus
- Noise
Thank you for the recap @hans799. Sometimes when my posts appear negative or skeptical, I think I am unconsciously looking for reassurance of why I should be hopeful for this product. Your input and also @TimmyC have great knowledge on this topic.
I am still thinking of what I thought earlier today that an announcement will come soon. The reasons being:
- They said they submitted the paper for peer review in the Q&A that was done in December. This ranges from 3-6 months to publication. So I am hoping that it will be ready soon and the true results will be available to us all.
- The last conference (or the ones already advertised on website) is at the end of March. Perhaps then they'll release some more info to us.
- They keep saying 'soon'. I wouldn't expect it to be too long now.
I would just like to share some criticism that I've found myself questioning and certainly don't want to put negativity in the thread but thought it's important to note:
- I've encountered about 3 people on Facebook support groups who were on the trials and said things along the lines of "it did nothing".
- Clare B has mentioned bumping into others who it did nothing for.
- The latest questionable testimonials. I know they weren't negative, but there was no clear indication of how much if any reduction in volume they actually had.
- I've read the paper on Susan Shore's trial on 20 people. @Aaron123 made a fair comment to say the results were good, but not Earth shattering.
Still, I remain hopeful. What I really hope for is that:
- They've distinguished who has the greatest chance of it working for. Honestly parting with thousands of pounds with a "well it might work for you and it might not" just doesn't want me to go through the heartache of having blown thousands and for zero benefit.
- They've learnt something new. Remember TENT-A2 has 9 arms compared to the TENT-A1 with 3 arms. As Ross O'Neill only talked about the TENT-A1 in the Q&A presumably they may have found an even better method with greater efficacy. Who knows?! I still don't know what they meant by tinnitus sub-groups under subjective tinnitus. Sub-groups to me are subjective, objective, pulsatile... But what sub-groups under subjective tinnitus are there?
- The recommended usage is 30-60 mins a day for 12 weeks. I am hoping that they think (even though they only have the data for above) that increased usage will mean continued decrease in tinnitus. Also, if the lower the tinnitus volume the greater the chance of a 'cure' or is it just simply that doesn't matter, if you respond, you respond.
- There will be a rental choice of the device. If this was more affordable and if Neuromod is a good treatment option, many more people will benefit. I wouldn't hold back even before the 'true' testimonials come onto Tinnitus Talk. As you all know I've stated I will be waiting for the evidence base to build up on Tinnitus Talk - thank you Tinnitus Talk) before purchasing.
- Hubert Lim receives my poem I sent him, sees the light and leaves his wife.
I am still thinking of what I thought earlier today that an announcement will come soon. The reasons being:
- They said they submitted the paper for peer review in the Q&A that was done in December. This ranges from 3-6 months to publication. So I am hoping that it will be ready soon and the true results will be available to us all.
- The last conference (or the ones already advertised on website) is at the end of March. Perhaps then they'll release some more info to us.
- They keep saying 'soon'. I wouldn't expect it to be too long now.
I would just like to share some criticism that I've found myself questioning and certainly don't want to put negativity in the thread but thought it's important to note:
- I've encountered about 3 people on Facebook support groups who were on the trials and said things along the lines of "it did nothing".
- Clare B has mentioned bumping into others who it did nothing for.
- The latest questionable testimonials. I know they weren't negative, but there was no clear indication of how much if any reduction in volume they actually had.
- I've read the paper on Susan Shore's trial on 20 people. @Aaron123 made a fair comment to say the results were good, but not Earth shattering.
Still, I remain hopeful. What I really hope for is that:
- They've distinguished who has the greatest chance of it working for. Honestly parting with thousands of pounds with a "well it might work for you and it might not" just doesn't want me to go through the heartache of having blown thousands and for zero benefit.
- They've learnt something new. Remember TENT-A2 has 9 arms compared to the TENT-A1 with 3 arms. As Ross O'Neill only talked about the TENT-A1 in the Q&A presumably they may have found an even better method with greater efficacy. Who knows?! I still don't know what they meant by tinnitus sub-groups under subjective tinnitus. Sub-groups to me are subjective, objective, pulsatile... But what sub-groups under subjective tinnitus are there?
- The recommended usage is 30-60 mins a day for 12 weeks. I am hoping that they think (even though they only have the data for above) that increased usage will mean continued decrease in tinnitus. Also, if the lower the tinnitus volume the greater the chance of a 'cure' or is it just simply that doesn't matter, if you respond, you respond.
- There will be a rental choice of the device. If this was more affordable and if Neuromod is a good treatment option, many more people will benefit. I wouldn't hold back even before the 'true' testimonials come onto Tinnitus Talk. As you all know I've stated I will be waiting for the evidence base to build up on Tinnitus Talk - thank you Tinnitus Talk) before purchasing.
- Hubert Lim receives my poem I sent him, sees the light and leaves his wife.
@Paulmanlike Great (and non-hysterical! 
) summary of the potential negatives, thanks. I think our two posts taken together provide a balanced view of what we hope for and fear about this product, based on currently available information. Let's hope for more very soon.
) summary of the potential negatives, thanks. I think our two posts taken together provide a balanced view of what we hope for and fear about this product, based on currently available information. Let's hope for more very soon.This could well be survivorship bias. I know several people have stated on here that if their tinnitus was cured/brought down to a reasonable level, they'd never look back and get busy moving on with their lives.
I think Clare and others mentioned that since they barely think about it anymore it didn't become important to check here.
That obviously doesn't solve all of your points but that's my hopeful way of looking at it, we know of about 5 who said it didn't work for them, but they're claiming for 80% it did something so those numbers are pretty reasonable IMO.
I hope you two find true happiness together.
- May 7, 2015
- 1,050
- Tinnitus Since
- 29.09/2014
- Cause of Tinnitus
- Acoustic trauma using headphones
Until we find out more (and thanks to all who are trying to clean up this thread from constant and unfounded negativity), this remains one of the most interesting aspects to me. Have they tried using it on anyone for TWO hours a day? What about THREE? If the effects/changes in plasticity compound over time (which is what @kelpiemsp has suggested with his treatments), is there a possibility of even greater effects with, say EIGHT hours a day? I'm sure some of our loudest tinnitus folks would wear it round the clock if it meant further reductions.
Maybe they chose one hour because they have reason to believe anything after that is superfluous, or maybe it was just because it's a good number when you need a bunch of people in a trial to comply. Either way, I'm eager to find out.
On a side note, when I was 19 years old I could still hear 20 kHz. Now at 30, even though I have bad hiss and spontaneous high pitch ringing in both ears, I can still hear 17 kHz easily and maybe even higher if my AirPods didn't cap out at that.
- Oct 17, 2017
- 644
- Tinnitus Since
- 2005
- Cause of Tinnitus
- unknown - possibly hereditary
I greatly doubt anyone could deal with holding that mouthpiece in place for 8 hours per day.
Drone Draper
Member
There are people with tinnitus who wear earmuffs while doing the dishes or even showering. I think I read about a chap who washes his hair with shampoo outside of the shower to accommodate the muffs. If I was that troubled by horrific tinnitus, I would probably be OK with a sore tongue. I guess there are people who wear a splint for TMJ? Maybe it's about as tolerable as that.
I've often wondered about the 1 hour a day treatment. I believe the reason for 1 hour was that it was sufficient time for the treatment to be effective while also being short enough for the subjects to be compliant - e.g. if they wanted the subjects to use it for 4 hours, compliance would probably drop off. I do hope it'll be clear if you can use it longer for a more pronounced effect. Either way I think I'll be doing 1 hour a day, because there is no way in hell I would take it with me to the office or the gym.
I've often wondered about the 1 hour a day treatment. I believe the reason for 1 hour was that it was sufficient time for the treatment to be effective while also being short enough for the subjects to be compliant - e.g. if they wanted the subjects to use it for 4 hours, compliance would probably drop off. I do hope it'll be clear if you can use it longer for a more pronounced effect. Either way I think I'll be doing 1 hour a day, because there is no way in hell I would take it with me to the office or the gym.
@Paulmanlike
When you say:
« I've encountered about 3 people on Facebook support groups who were on the trials and said things along the lines of "it did nothing". »
Do you know more about the type of tinnitus these people have? How was their tinnitus caused? The age of each person? (Did they participate in the Neuromod's trial in 2018 or was it in 2015 with the former device?)
Thanks
When you say:
« I've encountered about 3 people on Facebook support groups who were on the trials and said things along the lines of "it did nothing". »
Do you know more about the type of tinnitus these people have? How was their tinnitus caused? The age of each person? (Did they participate in the Neuromod's trial in 2018 or was it in 2015 with the former device?)
Thanks
I have been thinking the same thing. Sadly I might be one of those people that uses it more than suggested. I think it's an interesting perspective on the device. I would think Neuromod would have a hard time saying extended periods are safe or not since they are not testing that unless I missed something.
- Apr 15, 2017
- 1,419
- Tinnitus Since
- 2008
- Cause of Tinnitus
- Noise
The peer review process is changing.
Source
http://thesciencepost.com/peer-reviewed-studies-soon-to-be-replaced-by-caps-lock/
Hopefully we will see NEUROMOD WORKS!
Source
http://thesciencepost.com/peer-reviewed-studies-soon-to-be-replaced-by-caps-lock/
Hopefully we will see NEUROMOD WORKS!
Drone Draper
Member
I encountered one guy who got tinnitus from Cisplatin, which was used as chemotherapy for cancer. He was probs about 40 to mid-50s (no good profile pics), he'd had it for about eight years.
He said "There were 30 of us or more on the trial yes some people it worked for", so please keep the faith, ringers.
- Apr 15, 2017
- 1,419
- Tinnitus Since
- 2008
- Cause of Tinnitus
- Noise
One was in the 2017 study as they mentioned. I did inquire about more info but got no reply. I would think though that they all had to sign an NDA otherwise you would find a lot more through the various forums/groups about the trial. I guess it's not in Neuromod's best interests to have 'leakers', especially the negative comments I've found. Either way, a sufferer will do all he can to find out and find hope.@Paulmanlike
When you say:
« I've encountered about 3 people on Facebook support groups who were on the trials and said things along the lines of "it did nothing". »
Do you know more about the type of tinnitus these people have? How was their tinnitus caused? The age of each person? (Did they participate in the Neuromod's trial in 2018 or was it in 2015 with the former device?)
Thanks
Fabrikat
Member
- May 1, 2017
- 416
- Tinnitus Since
- 1973
- Cause of Tinnitus
- Otosclerosis then volume then viral infection
If it did nothing for Cisplatin induced tinnitus, the implication for me is that Neuromod will only be effective for relatively mild cases of tinnitus. The testimonials appear to confirm this view too.
Ototoxic drugs such as Cisplatin damage whole swathes of hearing frequencies and cause profound tinnitus perception.
I hope the peer review differentiates between likely beneficiaries before people part with thousands of euros for this device. It'd be cruel if it didn't.
I know almost deaf people who have relatively mild tinnitus. My hearing is OK but I have severe tinnitus in all ranges with beeps, hissing, whistles, roaring, Morse Code Tinnitus, and much more. There must be something else in the brain which creates these unbearable sounds. This is where bimodal stimaultion might get in. At least I hope so.
But my feeling is also that 80% success (improvement - whatever it means) seems very high. But why doesn't it help these people? Has Neuromod or their experts given any explanation?
But my feeling is also that 80% success (improvement - whatever it means) seems very high. But why doesn't it help these people? Has Neuromod or their experts given any explanation?
Drone Draper
Member
I have done some very preliminary searches about Cisplatin. Apparently it is one of THE MOST ototoxic drugs that is out there. My GP said that tinnitus is a known side effect, but of course, if you have cancer and need chemotherapy, it's probably a side effect you're willing to risk.
I've reached out to the individual in question to ask a bit more about his experience and the others on the trial. Hopefully he'll be happy to share some of his experiences.
I've reached out to the individual in question to ask a bit more about his experience and the others on the trial. Hopefully he'll be happy to share some of his experiences.
Some things that we are aware of affecting this treatment is the type of tinnitus you have and possibly age.
They stated that "mechanical" tinnitus won't be helped very much.
Also, the older you are the harder it is for neuroplasticity to change. Hence why @Clare B said that the older people on her trials didn't get much benefit. This may be the reason why, or it may not.
They stated that "mechanical" tinnitus won't be helped very much.
Also, the older you are the harder it is for neuroplasticity to change. Hence why @Clare B said that the older people on her trials didn't get much benefit. This may be the reason why, or it may not.
The original MuteButton has had some success (my TRT therapist knows of some instances) so this newer version should have even better success. And so on. The science seems to be sound enough, after all.
I'm not actually expecting it to work for me at this stage (possibly because I'm a glass half empty kind of gal) but I believe this is the start of an actual effective treatment for tinnitus that just needs further refining. And statistically speaking, some of us here will see significant improvements, if not elimination, from this device. We already have three members.
Science-inclined people please feel free to correct me here, but I wouldn't worry about what type of tinnitus you have - regardless of the cause of tinnitus, it's still neurons misfiring in the brain isn't it? Tinnitus is a symptom, not a condition in its own right.
I'm not actually expecting it to work for me at this stage (possibly because I'm a glass half empty kind of gal) but I believe this is the start of an actual effective treatment for tinnitus that just needs further refining. And statistically speaking, some of us here will see significant improvements, if not elimination, from this device. We already have three members.
Science-inclined people please feel free to correct me here, but I wouldn't worry about what type of tinnitus you have - regardless of the cause of tinnitus, it's still neurons misfiring in the brain isn't it? Tinnitus is a symptom, not a condition in its own right.
Please, be brutally honest. Do I have a chance to try this technology if I live in Argentina? I'm afraid it will not even be available in my country.
I know I expressed this many times, but I do not know whether to continue reading this thread. After all ... maybe these medical advances are not for me.
I know I expressed this many times, but I do not know whether to continue reading this thread. After all ... maybe these medical advances are not for me.
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