MuteButton

[IvanRus]

Honestly, I never for a second believe in these miracle devices like Neuromood.

It is quite easy to figure it out - Lol, how are these dudes going to treat this pathology with some kind of device, when the mechanics (pathophysiology) of tinnitus are not understood and not studied?

That means this device is already just a "shop on the couch" and not real medicine.

You need to understand the mechanism and the whole chain of occurrence of a disease/symptom in order to try and treat it.

With tinnitus, nothing is yet known. What part of the brain, why, what neurotransmitters and neurons are part of the process? Until these questions are answered clearly, it's too early to think about the miracle of a treatment.

Dr. Tzounopoulos is doing it right, who, together with the development of his drug, is actively exploring the pathophysiological model of tinnitus itself.

But he does not have enough money. Here it is - capitalism. All the money is made by ignorant drug addicts on the stage. Scientists who are trying to improve the lives of millions, get pennies.

 

[PDodge]

Honestly, I never for a second believe in these miracle devices like Neuromood.

It is quite easy to figure it out - Lol, how are these dudes going to treat this pathology with some kind of device, when the mechanics (pathophysiology) of tinnitus are not understood and not studied?

That means this device is already just a "shop on the couch" and not real medicine.

You need to understand the mechanism and the whole chain of occurrence of a disease/symptom in order to try and treat it.

With tinnitus, nothing is yet known. What part of the brain, why, what neurotransmitters and neurons are part of the process? Until these questions are answered clearly, it's too early to think about the miracle of a treatment.

Dr. Tzounopoulos is doing it right, who, together with the development of his drug, is actively exploring the pathophysiological model of tinnitus itself.

But he does not have enough money. Here it is - capitalism. All the money is made by ignorant drug addicts on the stage. Scientists who are trying to improve the lives of millions, get pennies.

Drugs don't have to fix everything. Tinnitus is so beyond that I wouldn't be surprised if the fix is off the beaten path. Now I don't have 100% in this. I don't think anyone does until we can try it out.

 

[dayma]

Honestly, I never for a second believe in these miracle devices like Neuromood.

It is quite easy to figure it out - Lol, how are these dudes going to treat this pathology with some kind of device, when the mechanics (pathophysiology) of tinnitus are not understood and not studied?

That means this device is already just a "shop on the couch" and not real medicine.

You need to understand the mechanism and the whole chain of occurrence of a disease/symptom in order to try and treat it.

With tinnitus, nothing is yet known. What part of the brain, why, what neurotransmitters and neurons are part of the process? Until these questions are answered clearly, it's too early to think about the miracle of a treatment.

Dr. Tzounopoulos is doing it right, who, together with the development of his drug, is actively exploring the pathophysiological model of tinnitus itself.

But he does not have enough money. Here it is - capitalism. All the money is made by ignorant drug addicts on the stage. Scientists who are trying to improve the lives of millions, get pennies.

I am not sure why you feel that we do not know why tinnitus is happening in the brain. It is false to say that there are not studies happening or have happened to understand tinnitus.

Watch some of the TEDTalks from Josef Rauschecker or other videos from Susan Shore.

 

[Bill_]

Honestly, I never for a second believe in these miracle devices like Neuromood.

It is quite easy to figure it out - Lol, how are these dudes going to treat this pathology with some kind of device, when the mechanics (pathophysiology) of tinnitus are not understood and not studied?

That means this device is already just a "shop on the couch" and not real medicine.

You need to understand the mechanism and the whole chain of occurrence of a disease/symptom in order to try and treat it.

With tinnitus, nothing is yet known. What part of the brain, why, what neurotransmitters and neurons are part of the process? Until these questions are answered clearly, it's too early to think about the miracle of a treatment.

Dr. Tzounopoulos is doing it right, who, together with the development of his drug, is actively exploring the pathophysiological model of tinnitus itself.

But he does not have enough money. Here it is - capitalism. All the money is made by ignorant drug addicts on the stage. Scientists who are trying to improve the lives of millions, get pennies.

Well, Penicillin was discovered by accident, so I'd try not to be too pessimistic. Sometimes it works just the other why round - something works and then you start to find out why!

 

[Sam Bridge]

@IvanRus

Have you spoken to people like Hubert Lim? I'm sure this is not a wild stab in the dark.

 

[jay777]

So it flopped in 2015, now the relaunch with a bigger study based on a questionnaire.

Will the bigger study make this work in the real world?

 

[OnceUponaTime]

Did @Steve and @Markku get a free MuteButton?? I hope they did after all that work they did in putting that video together for Neuromod and us! Just saying.

 

[Markku]

Did @Steve and @Markku get a free MuteButton?? I hope they did after all that work they did in putting that video together for Neuromod and us! Just saying.

Nope we didn't get free devices (or any discounts for that matter). No compensation from Neuromod.

I would like to ask them though if they could offer devices up for our members at a discounted rate and/or maybe offer some devices for free for a contest/raffle of some sort.

Need to think about it.

 

[sakrt]

Imagine a contest here. Poor Glynis

 

[Don Tinny]

Honestly, I never for a second believe in these miracle devices like Neuromood.

It is quite easy to figure it out - Lol, how are these dudes going to treat this pathology with some kind of device, when the mechanics (pathophysiology) of tinnitus are not understood and not studied?

That means this device is already just a "shop on the couch" and not real medicine.

You need to understand the mechanism and the whole chain of occurrence of a disease/symptom in order to try and treat it.

With tinnitus, nothing is yet known. What part of the brain, why, what neurotransmitters and neurons are part of the process? Until these questions are answered clearly, it's too early to think about the miracle of a treatment.

Dr. Tzounopoulos is doing it right, who, together with the development of his drug, is actively exploring the pathophysiological model of tinnitus itself.

But he does not have enough money. Here it is - capitalism. All the money is made by ignorant drug addicts on the stage. Scientists who are trying to improve the lives of millions, get pennies.

Scientists never understand everything. There are drugs on the market with unknown mechanisms of action and yet they work. You take it, your symptoms improve and they do not know why (only theories)

https://en.wikipedia.org/wiki/Category:Drugs_with_unknown_mechanisms_of_action

 

[spedgas]

Maybe I'm slow, but I've been trying to piece together just how three different devices (Neuromod, Susan Shore, and University of Minnesota) are all going to fit in the marketplace.

Granted it's extremely early to be thinking about this. I see now that these three devices all differ enough in their brain targets and forms to certainly coexist. I read a post from the University of Minnesota that they are putting theirs into the physical form of a hearing aid. Supposedly they are starting their phase three trial early this year.

I guess choices are good. I just hope that by the time all these are available that these groups can clearly state who their target patient is.

Hopefully the differences means they can collectively treat an overall larger percent of tinnitus patients. I'll try them all if I have to, but I hope it doesn't come to that.

 

[BuzzyBee]

Nope we didn't get free devices (or any discounts for that matter). No compensation from Neuromod.

I would like to ask them though if they could offer devices up for our members at a discounted rate and/or maybe offer some devices for free for a contest/raffle of some sort.

Need to think about it.

Rather than focus on giving it away free, I would hope that Tinnitus Talk would just make it perfectly clear where, when and from whom can we buy the Neuromod device. Doctors and audiologists who I've mentioned this to don't have much to say about it, and I get the feeling that it's not really something that's going to be marketed at all in 2019 because it is still in pretty strict clinical trials.

I loved the idea of flying to Dublin and buying it, but it seems that will not be possible. If I'm wrong and we can go buy it before it is approved in the USA and other countries, please tell us where to go and how much money to bring.

 

[PDodge]

Rather than focus on giving it away free, I would hope that Tinnitus Talk would just make it perfectly clear where, when and from whom can we buy the Neuromod device. Doctors and audiologists who I've mentioned this to don't have much to say about it, and I get the feeling that it's not really something that's going to be marketed at all in 2019 because it is still in pretty strict clinical trials.

I loved the idea of flying to Dublin and buying it, but it seems that will not be possible. If I'm wrong and we can go buy it before it is approved in the USA and other countries, please tell us where to go and how much money to bring.

I don't think you'd even be questioned bringing it back to the USA. Maybe I'm wrong but I don't see why it would matter?

 

[SignalExec]

Doctors and audiologists who I've mentioned this to don't have much to say about it.

This is right. If Neuromod were on the verge of releasing this, I expect health professionals to be aware of this.

Are there any Irish people here who have asked their doctors whether they know this is coming?

 

[Helheim]

This is right. If Neuromod were on the verge of releasing this, I expect health professionals to be aware of this.

Are there any Irish people here who have asked their doctors whether they know this is coming?

To be honest most doctors are fairly clueless about research developments in general (I had to explain hyperacusis to ENTs and audiologists so many times it's not even funny) so I wouldn't think this makes a difference.

 

[spedgas]

Rather than focus on giving it away free, I would hope that Tinnitus Talk would just make it perfectly clear where, when and from whom can we buy the Neuromod device. Doctors and audiologists who I've mentioned this to don't have much to say about it, and I get the feeling that it's not really something that's going to be marketed at all in 2019 because it is still in pretty strict clinical trials.

I loved the idea of flying to Dublin and buying it, but it seems that will not be possible. If I'm wrong and we can go buy it before it is approved in the USA and other countries, please tell us where to go and how much money to bring.

I'm seeing an audiologist tomorrow. I was thinking about mentioning Neuromod, but I'm not going to. I know it would be met with a blank stare.
I've also had fantasies about flying to Dublin. There are just too many unknowns for those living in countries where it isn't yet available. I'm sure somebody will figure out a way and let us know.

 

[spedgas]

Rather than focus on giving it away free, I would hope that Tinnitus Talk would just make it perfectly clear where, when and from whom can we buy the Neuromod device. Doctors and audiologists who I've mentioned this to don't have much to say about it, and I get the feeling that it's not really something that's going to be marketed at all in 2019 because it is still in pretty strict clinical trials.

I loved the idea of flying to Dublin and buying it, but it seems that will not be possible. If I'm wrong and we can go buy it before it is approved in the USA and other countries, please tell us where to go and how much money to bring.

I live in a fairly major US city. I have the sinking feeling it won't be easy for me to get once it's even legally sold the US. I guarantee I'll have to travel just in the US to get one.

 

[Jack Straw]

 

[Watasha]

This is right. If Neuromod were on the verge of releasing this, I expect health professionals to be aware of this.

I saw an audiologist in early September in the US for TRT who was aware of "a tongue stimulating device" when I mentioned Michigan and Minnesota work. So yes, there are some that are aware.

Neuromod is also advertising in ATA magazine so they would appear to be preparing the for a US market entry (timing unknown).

 

[ruud1boy]

Just think though, when the other devices eventually come to fruition, all us Europeans will be hunting up Skyscanner for cheap flights and trying to find Minnesota on a map. Haven't a scooby where it is!

 

[ruud1boy]

You need to understand the mechanism and the whole chain of occurrence of a disease/symptom in order to try and treat it.

I couldn't give a toss about mechanisms of tinnitus and all the rest. If someone, anyone can show me some magic beans that work to reduce the volume of my tinnitus, I'll buy them.

 

[Martin69]

Nope we didn't get free devices (or any discounts for that matter). No compensation from Neuromod.

I would like to ask them though if they could offer devices up for our members at a discounted rate and/or maybe offer some devices for free for a contest/raffle of some sort.

Need to think about it.

We all should remember that the MuteButton device won't be the Holy Grail. It will help some, but not everyone.

Hence the selling argument will be the percentage of success rate. The lower this is, the more difficult it will be to be sold on the market. Therefore, I could imagine they would like to control who gets the device. Or at least they would like to have more experience to increase the success rate.

Imagine, 5 of the most severe cases here get the device for testing. But none or only maybe 1-2 report success.
Would others spend hundreds or maybe thousands of Euros just to test it? Or would it already be marked as failed?

In my opinion, no one can really know if it will help us or not. It depends on many things, severity of your tinnitus, length of treatment, finding the right settings etc. etc.

I am carefully optimistic that the devices will do something for us. But we need much more positive results.

Very difficult marketing for Neuromod IMHO.

My message to everyone: Have hope that it will work for us. But also remember the really dark time we all had when Autifony failed.

It would be great if Tinnitus Talk got some devices to test with.
If it is positive, Neuromod will be sold out in light velocity.

 

[OnceUponaTime]

Imagine, 5 of the most severe cases here get the device for testing. But none or only maybe 1-2 report success.
Would others spend hundreds or maybe thousands of Euros just to test it? Or would it already be marked as failed?

In my opinion, no one can really know if it will help us or not. It depends on many things, severity of your tinnitus, length of treatment, finding the right settings etc. etc.

Hi Martin, haven't seen you here in a while. Good to hear from you.
I would try the device regardless if it didn't help 5 or 100 people here. It might help me! And I will not want to miss that opportunity.

I also understand that not everyone has the financial resources to do that so they would be a bit more reluctant to try it. Also some of us are more desperate than others here because of the severity of the tinnitus.

It would be great if Tinnitus Talk got some devices to test with.
If it is positive, Neuromod will be sold out in light velocity.

I agree.

 

[Marko Nakovski]

They should give a couple of devices to some Tinnitus Talk members for free or maybe for half price.

They tend to make profit and if they give some for free or at a lower price, it wouldn't be a problem at all.

Also If they think this device had amazing results in the trials they shouldn't be afraid of failure right?

In this way they can have huge marketing boost and will improve their sales. Things usually work that way. They can't lose anything, they can only gain more.

Second thing is the price. Sure if one knows that they will have improvement they will pay 2000-3000 euros without even thinking about it.

But how do we know we will not waste thousands of euros for nothing? I'm interested about the percentage of people who had huge improvements, small improvements and no improvements at all. I think only then we can see the effectiveness of the device from another perspective.

They should give maybe 3-4 devices at a lower price to some people on Tinnitus Talk who are very active here, explain them how to use it and they can inform everyone about the results.

A couple of devices isn't big deal anyway, it's not like their balance will go in negative numbers.

I don't like this, I have bad feeling ... It looks to me like they are not so sure about the success of benefits of this device ... I hope I'm wrong ...

 

[Martin69]

Hi Martin, haven't seen you here in a while. Good to hear from you.
I would try the device regardless if it didn't help 5 or 100 people here. It might help me! And I will not want to miss that opportunity.

I also understand that not everyone has the financial resources to do that so they would be a bit more reluctant to try it. Also some of us are more desperate than others here because of the severity of the tinnitus.


I agree.

Hi my friend.
Yes, I am most of the time just lurking and watching this thread.

I also have the financial resources, but I will not spend money on something I do not have more success stories for from real patients. Desperation and frustration would be too big if it does not help.

I remember the ACRN device developed by Forschungszentrum Jülich. They spent 3 million Euros in development and the distributor ANM finally went bankrupt because no one paid 3400 (later 2700) Euro anymore for just an MP3 device playing beeps. Luckily, @Steve developed the poor man's version of ACRN and offered it here for free. And you can still read on some websites that 2 out of 3 patients were helped by this device. This is just BS.

Maybe I am the killjoy here, but better than having my hopes too high.

I guess we will know much more in some months.

Wasn't Dr. Langguth (from the Tinnitus Centre in Regensburg) involved somehow in the Neuromod/MuteButton research/development? Hence he will test it with patients in Germany and try getting an approval that health insurance will pay for it. I will try find more about this and perhaps write an eMail to Dr. Langguth.

 

[EDDTEKK]

Neuromod please hurry!

 

[Soren]

Wasn't Dr. Langguth (from the Tinnitus Centre in Regensburg) involved somehow in the Neuromod/MuteButton research/development? Hence he will test it with patients in Germany and try getting an approval that health insurance will pay for it. I will try find more about this and perhaps write an eMail to Dr. Langguth.

 

[TLion]

Same. I'm gonna drop the fuck out forever. You'll find good old Bam slapping a bongo in a tipi right at the back of the far corner of the end of fucking nowhere dressed in nothing and grinning at the moon.

I can see this with my inner eye RIGHT NOW.

 

[Bndsmheowqhe]

Just think though, when the other devices eventually come to fruition, all us Europeans will be hunting up Skyscanner for cheap flights and trying to find Minnesota on a map. Haven't a scooby where it is!

We're right next to Iowa. Hope that helps.

 

[john paul]

From a business point of view, they would be crazy to give anyone special treatment. It's just not how you do business.

For those that do do discounts it's either across the board or strictly hush hush.