MuteButton

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#3,481
Jazzer said:
I haven't been on this thread, but must say that I don't really quite understand the excited euphoria.

Nobody knows yet whether this thing is going to be of any significant help, or just a pipe dream, do they?
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Practically, no we don't know.

The hype comes from this area of treatment (bimodal stimulation) being looked at by several different research teams and the results we have seen so far have all been positive with anecdotal evidence of it working from several members here.

So this device, looking good but realistically still a mixed bag.

The research this device is based on, looks very promising.
 
#3,483
GamesB2 said:
Practically, no we don't know.

The hype comes from this area of treatment (bimodal stimulation) being looked at by several different research teams and the results we have seen so far have all been positive with anecdotal evidence of it working from several members here.

So this device, looking good but realistically still a mixed bag.

The research this device is based on, looks very promising.
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Of course I do hope there is a successful outcome.
Part of coping with this 'thing,' that doesn't deserve to be named, is accepting its permanence, and moving on.
And now you tell me that I might have to get used to it 'getting better?'
 
#3,486
What are your thoughts on MuteButton helping with visual snow and related symptoms?

Visual snow is located in another area of the brain, but it is linked to tinnitus and I've seen multiple reports online about visual snow getting better with tinnitus.

At this point in time I'm more interested in how it can help with visual snow. I'm desperate. It's so much worse than loud tinnitus.
 
#3,487
Arseny said:
What are your thoughts on MuteButton helping with visual snow and related symptoms?
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visual_snow_update.jpeg
 
#3,490
Autumnly said:
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I'm certainly skeptical about this, I admittedly haven't done much digging into what they're up to but I haven't come across any information on the trials they're supposedly running. If someone is aware please point me in their direction.

I do however think the organisation is very good and have donated large amounts to people who are the leaders in that area of research.

I hope one day soon to be able to see and hear clearly again without all this extra stimulation :)
 
#3,494
The wait for this must be incredibly frustrating - especially when expectations have been raised to such high levels at the end of last year. My advice though for anyone who doesn't have a sizeable amount of cash is to wait for another six months after the launch (whenever that may be!).

By that time we will have enough testimonies from people using the device to know whether it is the real deal or not - and there's a big difference between how you assess something you get for free in a clinical trial and how you assess it when you have just paid out several thousand pounds/dollars for it.
 
#3,495
Advice Sought:

Has anyone considered or tried any of the T.E.N.S. (Transcutaneous Electronic Nerve Stimulation) kits that are, for example, available on Amazon? Could applying electrical stimulation to various nerves in the neck or ear area have an effect that might approximate Neuromod's?
 
#3,496
Excellent advice, david c.
I jumped the gun and spent $5,269.00 on Desyncra when it was first available in Chicago, and as I have indicated elsewhere it was as useless as shining a flashlight on my head would have been.

My only question is: who will still be among the first to try this and report their findings to the rest of us?
I am so tired of this after over five years that I would be very tempted to start ASAP if my audiologist provided it.
 
#3,497
david c said:
The wait for this must be incredibly frustrating - especially when expectations have been raised to such high levels at the end of last year. My advice though for anyone who doesn't have a sizeable amount of cash is to wait for another six months after the launch (whenever that may be!).

By that time we will have enough testimonies from people using the device to know whether it is the real deal or not - and there's a big difference between how you assess something you get for free in a clinical trial and how you assess it when you have just paid out several thousand pounds/dollars for it.
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That's what I'm doing. No way I'm I spending £2-3k on an iPod placebo. If it works though, that's another story. Until then, I will put up with it.
 
#3,498
DaveFromChicago said:
Advice Sought:

Has anyone considered or tried any of the T.E.N.S. (Transcutaneous Electronic Nerve Stimulation) kits that are, for example, available on Amazon? Could applying electrical stimulation to various nerves in the neck or ear area have an effect that might approximate Neuromod's?
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I tried applying a TENS device directly behind my ear, no effect. Not that I really expected one - this wasn't even bimodal simulation, just unimodal.
 
#3,499
DaveFromChicago said:
Advice Sought:

Has anyone considered or tried any of the T.E.N.S. (Transcutaneous Electronic Nerve Stimulation) kits that are, for example, available on Amazon? Could applying electrical stimulation to various nerves in the neck or ear area have an effect that might approximate Neuromod's?
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I have thought about it, but I still think you need to have the timing and sound stimulation right. I wouldn't want to risk making it worse. I also so did electroacupuncture and it didn't do anything for me.
 
#3,503
DaveFromChicago said:
Excellent advice, david c.
I jumped the gun and spent $5,269.00 on Desyncra when it was first available in Chicago, and as I have indicated elsewhere it was as useless as shining a flashlight on my head would have been.

My only question is: who will still be among the first to try this and report their findings to the rest of us?
I am so tired of this after over five years that I would be very tempted to start ASAP if my audiologist provided it.
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I'm still pretty new to this. I have yet to be burned by an expensive device that doesn't deliver. I would absolutely be the first to try this one if I could. Living in the US is going to keep that from happening. I used to hate that I wouldn't be able to get this at first release, but now I think it's probably a good thing I can't get my hands on it until others have first. I firmly think it will help me, but I'm trying to mentally prepare for the potential that the relief won't be to the level I expect it to be.
 
#3,504
Jazzer said:
I haven't been on this thread, but must say that I don't really quite understand the excited euphoria.

Nobody knows yet whether this thing is going to be of any significant help, or just a pipe dream, do they?
Click to expand...
We have one person on here who was part of the trial and her tinnitus is now absolutely GONE. We have another member who took part in the Minnesota bimodal trial -- which uses a similar method/technique -- and his tinnitus went from super loud to barely noticeable.

Sounds pretty good, eh?

We very much should be hopeful/excited/eager ... though as others have said, the complaining about how long it's taking is getting a bit annoying. Finally a legitimate treatment is on its way. It will be here soon enough.
 
#3,506
I just saw an comment in an German bulletin board that a guy participated in the MuteButton trial in Regensburg Germany three years ago. I guess it was 2017.

Unfortunately it didn't have any effect for him :(
 
#3,507
EDDTEKK said:
I just saw an comment in an German bulletin board that a guy participated in the MuteButton trial in Regensburg Germany three years ago. I guess it was 2017.

Unfortunately it didn't have any effect for him :(
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I have found quite a few of participants who said it didn't do anything for them. The number is more than the anonymous @Clare B and @kelpiemsp who reported positive outcomes. Lots of high expectations from people before the device is released and also before even the actual papers are released (from both 2 large scale trials). The only thing that's positive is from the Q&A from the CEO of the developers of the device. As I've found, the company selling it will always say it works, at least for some people. I've sort of lost interest in it, at least any comments from Neuromod saying that it works. Even if the papers show it has some effect, I will be waiting for real life testimonials to build up (if they ever do) saying how much relief they get and the chances of it working.

It's going to cost at least €2,500 IMO based on the last sales in 2015. That isn't a pretty penny to me for something that "might work, might not".

If 100% of people responded, they could charge what they wanted, but seriously how much are you willing to fork out on something that might not work? I know we are all desperate, but in reality, I'm not forking out thousands for a treatment that has a low chance of working. How significant anyway is 2/3's and what does clinically significant mean anyway to Neuromod? Trials can sometimes be manipulated to get the results they wanted. They are business people after all. Not slating them, I'm just exploring the possibilities of the harsh realities of the world we live in.

The other treatments before mentioned all appeared to come from genuine people, how did that work out? If Neuromod read this, they need to be aware of the crap that's been sold over the years and the somewhat cynical veteran tinnitus sufferers. There's one guy on Tinnitus Talk, who has spent around £20,000 over the years and how much relief came from that? Nothing? The only thing that helped was hearing aids which are on the NHS in the U.K.

Another thing I may choose to rely on, apart from testimonials from Tinnitus Talk and the net, is NICE - National Institute of Clinical Excellence. If they recommend it, you know it's good. I can only hope Neuromod will be recommended by NICE one day, but from history, and having had tinnitus for a long time, I'm not going to be wasting good money.

I have learnt to be realistic and also cautious with tinnitus treatments from private companies. If you didn't have tinnitus or your close ones didn't have it and had no interest in it, would you invest in them? I wouldn't even at this stage, I consider it a very high risk investment and I would question if Neuromod will still be around in 5 years time.
 
#3,508
MarkLud said:
We have one person on here who was part of the trial and her tinnitus is now absolutely GONE. We have another member who took part in the Minnesota bimodal trial -- which uses a similar method/technique -- and his tinnitus went from super loud to barely noticeable.

Sounds pretty good, eh?

We very much should be hopeful/excited/eager ... though as others have said, the complaining about how long it's taking is getting a bit annoying. Finally a legitimate treatment is on its way. It will be here soon enough.
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Not fu*king soon enough.
 
#3,509
jmasterj said:
It is pretty quiet around
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Allan1967 said:
Not fu*king soon enough.
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Hey... on the bright side... a few folks, perhaps younger, perhaps less damaged, perhaps lucky, may find some relief from a treatment or technology. More than "habituation" done as we all do everyday... having and refining coping mechanisms to survive without pain and increase happiness.

We're waiting on multiple fronts. Let's stay positive!

For the record I've spent far more than 2,500 euros in pursuit of hedonistic indulgences.

My ears could use some pleasuring with some hot regenerative therapy followed by some slow loving in the form of neuromodulation. A brain ear orgasmic experience... it's cumming soon.
 
#3,510
Thanks very much Paulmanlike.

I have spent approximately $12,500.00 on useless treatments/supplements over the past 5 years (especially Desyncra).

I cannot allocate any more thousands for utterly effective treatments. I was counting on hearing that "90% had a 90% reduction."

This remind me of one of those flying machines before the Wright Brothers that would almost get off the ground and then collapse back to Earth.
 
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