Neuromonics

Hello. First time poster here,

I have had very mild tinnitus since I was 14 (18 now) and recently out of the blue the other month it seems to have kicked itself up another notch to what I would describe as moderate-loud. I'm not sure what exactly caused it to spike, or if it's just my perception of it that's changed due to minor lifestyle changes, but regardless this is now having a fairly drastic effect on my life and I need a way to deal with it to get back on track.

Sob stories aside, I've been reading a little bit about Neuromonics & Sound therapy lately and I'm curious to see if anyone here has anything to say about it. From what I've gathered from non-technical point of view it that it's simply replacing an irritating noise with a more pleasant one via a head device/headphones, correct? As basic as that sounds, it's very much appealing to me as I like the idea of being able to put some control back in my life. It'd be much appreciated if someone could give me some input. I'm not really concerned with how it works, I would just like to know how and if it's improved your tinnitus, or a least the way you deal with it and if it's safe.

Thanks.

 

Whoops, I meant to start my own thread yet it ended up here. I may as well leave it though, huh?

 

Ok, I am no longer using the isuppress app on my ipod, I am now going with something new and the total opposite of what I was doing originally which is what my audiologist suggested as it just wasn't working. I would suggest for those of you that want to give it a go that you try notched sound therapy, after just one week (this is what the developers of the website claim) listening will reduce the perceived volume of your T, and by god it actually worked (for me), the critical part is finding your frequency, I have now learnt that I have three different frequencies, one is at 13khz, the other around 10khz and the 3rd is just under 4khz, the most annoying is the 13khz. I listen to the notched white noise. For those with T under 8khz, you can listen to your own notched music or just white noise.

Today after 6 weeks of listening, generally at only 1 hour a day, this can be broken into 3 x 20 minute sessions, the high pitch 13khz is finally disappearing although the other less annoying pitched frequencies are now more noticeable, so I will start to work on those now. There is a joining fee but its not that expensive,its way less than the cost of a specialist that cant help you anyway (in my experience). The website that I use is at:

Tinnitus Treatment Sound Therapy - AudioNotch | AudioNotch

There is lots of info on the website, follow the instructions, and be patient, things are finally starting to change for me, after listening your T will sound louder, but this quietens down after a few hours so don't listen too close to bed time.

To help identify your frequency accurately user their tuner, I use good quality ear buds with earmuffs on, this works very well. Anyway follow the instructions and read the Q&A information. Remember this treatment takes time and a positive attitude, sometimes it may seem like it gets worse over a week of listening, and then suddenly you have a really good day, then a bad one again, then there are moments when you think hang on a sec my T is not that noticeable, its up and down, but very very slowly its starting to change for me. Hope this is of value to some of you.....!! All the very best to you all and please post back here, so that others (and I) can learn from your experience too. I will post again in another month with an update.

 

read my post above, give it a try, my T was sudden onset, and started to stress me out, Ive been through the ringer with it and spent a bit of money on specialists, frankly these people were useless, I knew more about T than they did, but I don't give up easily, I was sceptical at first about notched sound therapy.... but its starting to show benefits, give it a go......it cant hurt and keep us posted here.

 

In response to your questions:
1. Yes I have to turn it up too, the higher the frequency the louder I need it
2. Its not the computer, it could be your speakers or your ear buds aren't any good or that your deaf to higher frequencies, which may be the cause of your T.
3. it should be safe, it hasn't hurt me, but watch the volume level, and remember if your deaf to the frequency turning it up isn't going to make you hear it. Have a read of my previous post on notched sound therapy, you'll be pleasantly surprised at how its starting to smash my T....yay.... It may work for you too

 

Hi Per, check out my latest post, it may be of interest. Cheers

 

Is listening to these tones on, for example iphone app mytinnitus, dangerous and could it cause the tinnitus to worsen? I am new to this forum and getting alot of info but I am scared to play around with the tones. I would appreciate any info . thanks

 

So, its going to take another 2 months to get my Oasis and I've already waited 4 months. This is getting ridiculous. I called up my Audiologist and asked about hearing aid maskers (I dont have hearing loss) and she basically told me to just forget about that and stop researching tinnitus and get on with life. I was sad. I was desperate so I called up a few other audiologists and I talked on the phone with one, who said I could get maskers for tinnitus. Do I go behind my audiologists back and get another opinion? Ugh, I just want this to go away and it wont, and there's a weird clicking noise in my tinnitus ear when I talk and no one seems to care about that. Tinnitus and clicking in the same ear occurring at the same time sounds related to me. Instead I was told to go to a speech pathologist. What?!!! Some one please make this nightmare end!

 

Hey Neenie. What's the weather like in WA at the mo? It's a beautiful 23• here in Brissy. Sitting on the back deck willing the cicadas to start up again. They are soothing for the T.
Hang in there.

 

You know to some extent the audiologist is right. I have tinnitus with hearing loss, for me the tinnitus is the least of my problems. Its the hearing loss and vertigo that comes with it thats the nuisance.

Anyway, in the mean time I recommend checking a guy called Julian Cowan Hill on youtube , he explains the whole thing really well. This is someone who can help you too.

 

Hi Neenie,

I'm so sorry you're having such a difficult time.

I've researched the clicking as I myself had it too.

According to the Mayo Clinic...

Tinnitus involves the annoying sensation of hearing sound when no external sound is present. Tinnitus symptoms include these types of phantom noises in your ears:

• Ringing
• Buzzing
• Roaring
• Clicking
• Hissing

http://www.mayoclinic.com/health/tinnitus/DS00365/DSECTION=symptoms

It's all just a part of T.

Distractions are going to be your best friend right now. Do what you have to do to distract yourself fom your T.

(((Hugs dear)))

 

Yes. And it's not like your going behind anyones back, you should always strive for the most authentic and plausible answer to questions. Remember, the "experts" are basically telling us they don't know, so I believe its time to ditch the expert titles and just face the fact. WE must take charge ourselves and follow our own path. I've been fed so much bull from ENTs and audiologists, it worked as a motivator for me cause I was forced to seek answers myself, one way of doing that is to read and educate yourself. When a doc is getting annoyed by the knowledge you build for yourself then you know your onto something right. Remember, "doctors" hate people who know stuff. It makes them feel fragile cause it disturbs their view on the world. The "dumb patient" is what they find most pleasant. The ones that don't ask questions and quietly accept that theres no answers. Just because someone with a badge on the jacket saying "expert" is telling you something it does NOT mean it's a fact. If I would blindly believe all the doctors I've been facing trough the years I would be dead an buried by now.

For us this is life or no life. For the medical staff it's just another day at the office. They don't really care, I guess you have noticed that already.

 

Hi ya. When I get the clicking when I talk I can also feel it in my ear and the clicks are clearly audible to other people near me while I talk. Do you have this too?

 

Neenie, no I don't have it as you described. I can be perfectly still, lying in bed and I will hearing clicking in my ear. Are you sure you don't have TMJ?

 

I'm hearing vibral sounds within my ear. Never experienced them before. Gonna take some Xanaflex to see if it helps

 

What you're and I may be experiencing is myoclonal tinnitus.

 

Thanks Packy. I just wish I knew the cause of all of this. And Misery, I'm going to the dentist today just to double check if I do infact have TMJ. The MRI said I didnt. I'm so confused. I have 5 days till Xmas and I need to get myself sorted. I want all of you, every single person that goes on this forum to have a Happy Christmas. Maybe the Santa will be nice to us, or maybe i'm just hoping for something that is impossible. I'm annoyed that doctors can't tell you the cause. I understand if it's noise induced or trauma induced, but I dont understand if it just happens from one second to the next and bam it's there forever. Not fair....not fair on anyone

 

Hello @Neenie - Sorry to hear you have tinnitus at such a young age. I know of all the misery & torture it can cause. I seen this TMJ doc as a last resort for finding my tinnitus source. Some think that it is a red herring as a cause of your T though. I am still not sure if it caused some of my noise, but he said it could. I also had noise exposure and adult ear infections. I talked to him on the phone for a little while today. I originally seen him in Dec. 2010 and had the radiographic exams. His youtube video. .http://www.youtube.com/watch?feature=player_detailpage&v=rndAmPCYhTQ#t=0

 

Has anyone been using the Neuromonics treatment? Has it helped? If so, did you use the Oasis or Sanctuary device? Have to make a quick decision, as I move from the US to the UK this year, and Neuronomics or its equivalent does not exist over there. Thanks so much!

 

Well, the Oasis is part of a package - NTT - that uses sound therapy and counseling to purportedly facilitate the habituation of tinnitus. You pay for the counseling as part of the package - but since you will be moving to the UK where there is no Neuromonics, it sounds to me like those counseling dollars will be wasted. The Sancturary? As far as I can tell it's a fancy MP3 player. There's no counseling with the Sanctuary - but seems to me that you'd be much better off dollar-wise at BestBuy or Amazon.com with an MP3 player that doesn't have the Neuromonics logo on it. That's my take on it, anyway.

Stephen Nagler

 

Thanks, SP. They supposedly write in a neural stimulus to the music. Not sure if that is a good or bad thing But besides the counseling part, not quite sure what the difference is between the two devices. I heard there is a big success rate with this treatment. But hard pressed to find enough unbiased data on it.

 

Hi Lisa .. Neuromonics didn't work for me.. Nor did it work for 2 friends of mine.. Don't waste your hard earned cash ..buy yourself an i pod or mp3 player.. Download some digitally enhanced Tinnitus music or nature sounds off the internet .. Job done !! Don't be taken in by their fancy talk.. Good luck Lisa .. Micky

 

the sanctuary is not a treatment device. It actually says that in the information you get when you buy it! So agreed, its really just a big heavy chunky mp3 player

 

Not sure if you know this already or not, but a very nice member who goes by the name: "GeneralFuzz" has made a website, which uses the same principle as the company that made Acoustic Neuromodulation. I personally found relief for a couple of minutes after using it, and the relief will last a few minutes, though I only listened to it for a short period of time, and not the 6 hours a day recommended so I can't really say if it will give permanent relief. It might not be a "cure" by any means, but if your looking for temporary relief this is it:

http://www.generalfuzz.net/acrn/

It's pretty straight forward. Play the single frequency slider until you match the frequency of your Tinnitus. Once you have matched the frequency, click "Play ACRN." Make sure the volume is as low as possible, so you don't ruin your ears. If it doesn't work on your Firefox browser, use Google Chrome. Just what I've heard, as I personally don't have a problem with using Firefox.

 

Several interesting posts in this thread.

Let me make a few observations ...

Neuromonics is a for-profit corporation that manufactures a proprietary product that purportedly facilitates habituation of tinnitus. Cognitive Behavioral Therapy (CBT), Tinnitus Activities Treatment (TAT), Progressive Tinnitus Management (PTM), Tinnitus Retraining Therapy (TRT), etc. are habituation-based treatment protocols. They are not corporations. And when you see, for instance, a CBT study or a TRT study, there is no corporate money behind those studies. In a slick marketing move, Neuromonics has coined the term "NTT" (Neuromonics Tinnitus Treatment) in an effort to give it a three-letter moniker similar to that of the treatment protocols that do not have all those corporate dollars behind them.

Now Lisa has heard that there is a "big success rate" with NTT. No surprise there, because that's the line that Neuromonics feeds to the audiologists to whom it markets its devices as well as to an unsuspecting tinnitus public. Neuromonics boasts that it has a higher success rate than other treatments and that success is achieved in a shorter period of time. It also suggests to audiologists that since the treatment is largely technology-driven, they can make greater profits without devoting the type of man-hours to counseling required in the other approaches. And they have the data to back it up!! The problem is that all of the "studies" to which they refer are internal studies funded by - you guessed it - Neuromonics. Which is fertile ground for tremendous bias, don't you think?? The one exception is the wonderful study by Newman and Sandridge in the link above provided by Markku. Interestingly the Cleveland Clinic (where Newman and Sandridge are based) was one of the original beta-testing sites in the US for Neuromonics - so, if anything, they may have had a slight bias in favor of NTT. (I say"may" and "slight" because Newman and Sandridge are known to be meticulous investigators who would have taken great pains to make sure their data was not contaminated in any way.) And, as Markku observed, the study Newman & Sandridge study found no advantage for the Neuromonics Oasis and its proprietary "spectrally-enhanced music" over a pair of broadband sound generators in terms of success rate or time needed to achieve success. Indeed, the only difference was in cost to the patient - with the Oasis being considerably more expensive.

Hope this helps more than confuses.

sp

 

Erik, I would agree most folks with tinnitus tend to do reasonably will with nothing more than "tincture of time."

That said, the question remains regarding the natural history of the condition for those who do not.

So several years ago I attempted to in some small way find out.

Between 1997 and 2002 I ran a tinnitus center in the US. Our patients were by and large quite satisfied, but we wanted to find out if we were really doing any good - specifically as far as TRT was concerned. So we did an internal review. (Back then there was no Neuromonics, but I suspect the same findings would hold using the Neuromonics Oasis with proper counseling.)

Anyway, we chose to look at those TRT patients whose tinnitus awareness had dropped by 70% or more. (Tinnitus awareness was defined as the percentage of waking hours the patient was consciously aware or his or her tinnitus when not purposely listening for it. In TRT jargon, it would be Hp.) These data were easy to generate, since we followed our patients closely - and every six months or so they filled out questionnaires. We figured that if a person was going to do well without any intervention, then he or she would likely have made some significant improvement within the first two to four years after the onset of tinnitus.

Well, it turns out that the average length of time TRT patients in our clinic had suffered from tinnitus before starting TRT at the conclusion of which they had improved at least 70% was not two to four years. It wasn't even six or eight years. The average was 10.5 years! And three patients had suffered for more than 20 years before succeeding in TRT.

How do you know ahead of time who will do well with merely "tincture of time?" That I do not know. But I do know this - tinnitus sufferers who do not seem to be improving or who do not seem to be improving fast enough might want to at least consider looking into some form of habituation-based treatment, - TRT, CBT, NTT, PTM, TAT, etc.

Stephen Nagler

 

Thanks, All. I heard from one gentleman that it really helped him. Apparently they feed your exact t tone into the music and it trains your brain to habituate. He says the volume of his has reduced considerably with the treatment. This was a recent conversation on a great t support group on facebook:
https://www.facebook.com/groups/Tinnitussupportgroup/
The theory of all that makes some sense to me, being a musician and believing in the response to music therapy etc. But I wonder if the Sanctuary does this to the same degree as the Oasis. And I wonder if they can do it for multi tones. I have a number of tones going on at one time, although I am aware of the exact pitch/frequency of each.
I do understand the bias of research online towards the company. Although I have seen a couple of audiologists in California now who swear that it really helps their patients. They are a bit shady however as to any technical differences between the Oasis and Sanctuary. Great if the Oasis does include the TRT in its price difference, but I think it may be more technically enhanced re embedding tones and stimuli etc than the Sanctuary.

 

The Oasis does not include TRT in its price difference. It includes some vague form of counseling that you might or might not get depending on the clinician.

And as far as all the embedded tones, stimuli, etc., whether it's the Oasis or the Sanctuary there has never been a single reliable and independently verifiable study showing that either is any more effective than a plain old MP3 player ... as long as counseling by a knowledgeable and experienced tinnitus clinician is involved.

sp