Acoustic CR® Neuromodulation: a New Treatment for Tinnitus

Hi Per

Welcome to the site, I hope you find the experiences of others helpful, as I do; I find it supportive, especially when my T.spikes which can make you feel very isolated.

Sorry you had such a bad time with the ENT Consultant, when I first got T. & saw one, I had the complete opposite - the guy told me the T.would DEFINATELY go, no way was it permanent & that it would last a maximum of 6 weeks - that was 9 years ago & it's still going loud & clear. I honestly don't think a lot of them know what they're talking about & even if they think they do - unless you've had T., you cannot really know or empathise.

If you read the posts, hopefully you will pick up things that help, noise generators & maskers are always good. If you have an iPhone there are some good Apps for rexalaxation & sleep. It takes a long time to adapt & learn to live with T. & it's a daily struggle I know for a lot of us, but you will get there & as I said, look to this site for support & encouragement.

Debs

 

What a piece of shit that ENT is, that pisses me off so much! Don't stress though, most ENT's don't really know enough about tinnitus anyway, I've had to deal with a couple shockers myself.

Stay positive, you're still in very early days so there's a good chance your tinnitus could resolve by itself! You've also got treatment options available to you at this stage, such as intratympanic steroidal injections and hyperbaric chamber therapy - have a look around these forums and ask around, there's a gang a people on here that have way more knowledge and experience with this stuff than I do! Hope things start to get better buddy!

 

Thanks yonkapin, I was tempted to mention the name of the ENT cause he was right out evil. I got T the 17th of June so I'm constantly trying to read up on treatments and developments, I guess I'm stressing my system now and I know that T gets higher with stress, so I guess I should not focus too much but that is at this point in time impossible. It's louder, it's there and it has changed my life completely in these few weeks.

I'v been reading about heeps of treatment methods but I guess most of them are very alternative, alltough thats ok. It's better with some positive activity then the doom and gloom I received from that awful ENT surgeon. I will however try to avoid snake oil and "miracle pills", but I think I have rather good anti-snake oil radar.

I'm not in my own country but I will be soon, so I guess I will have to walk a long road when I get back home. Perhaps just the fact that Im in foreign environments creates stress, I got T while being under substantial stress but I'm also a long term music listener trough headphones, but I've never enjoyed too loud music, it's always been on 45-50% volume. However, my stress levels can really go trough the roof in very long periods. None of the doctors I've been seeing here (2 GP's and 1 ENT surgeon) have been remotely interested in my activities before the T started. NONE! That's pretty amazing, especially when I now know how many different factors that can activate T. I'm just lost for words.

Tinnitustalk.com is amazing. I hope the medical researchers and scientist are reading us, because there could be an answer to many things related to our condition here. Someone is sitting on the cure so to speak, cause everything that starts must be able to stop. If we can't really define what it is then we can't solve the mystery. I hope they are reading our stories and especially the ones that actually gets rid of the thing. I've read many stories on people suddenly waking up with no T. Let's support each other in the quest for answers...

 

Hi Steve

Im not going to bother with the tinnitus clinic and what they had to offer which was the TRT treatment. What they did offer was a small hearing aid type device that didnt amplify sound (as my hearing is very normal) it is like a noise generator and I think it is supposed to bring my sensitivity to sound back to normal levels.

The reason I dont want to go forward with the treatment is because I dont feel comfortable with how much the treatment costs, it was £1395 for this particular treatment which i feel is still very very expensive for what the treatment is. I know i will have two devices which i have to wear and i will get a years supply of batteries but for me i think they are in it to pocket a load of money and as of yet the is no solid evidence that sound therapy actually works better than a placebo.

 

Hi Matthew,

In my opinion don't bother with these noise generators, very expensive - I imagine it is simply a noise generator that is usually used with TRT. You can save yourself a lot of money by doing what I have done, and you can customise your sound generation for free or extremely cheaply -

I bought a pair of Airdrives http://store.gameshark.net/AirDrives (£45, thought the kids are £20 and the same size, they sit on top of your ear so do not block out any external sound - crap audio quality but great for masking tones). Use them with any audio player, download free sound files or I can send you a reasonable selection. This will do exactly the same thing but save you a small fortune. The principle of the noise generator is to play the tone so you can just still hear your tinnitus, this is supposed to help you habituate to it and stop perceiving it as a threat.

And if you want to replicate other sound generator treatments like the Widex Zen I have a few audio files based on that principle using bell sounds, or I can easily replace the instrument with something that works better for you.

 

I got white noise generators from NHS audiology, but I think this is increasingly rare unfortunately as costs are rationed.
They can be helpful sometimes when the tinnitus is especially bad, but I don't really buy into the whole Jastreboff TRT model. Anyway £1395 is way too much really - you can buy direct from a number of companies for around £400-500 - still quite a lot I know, but a lot cheaper than the tinnitus clinic.

 

Thanks mick for posting! I don't believe this neuromodulation will help me as my tinnitus reacts badly to sound therapy. For others, however, this therapy looks very promising! I wonder when they will target the US?

 

There's nothing new here from reading the abstract, just a rehash of the small study already completed, all they seem to have done was isolate those that responded well to the treatment and analyse them - looks more like marketing than research.

 

Hi

i would like to know what frequency were you at...and do you know anyone with high frequncy like 8-9 k who have benefitted......also their site lists benefit for some 1 with even 14 and 16 K any infoon dat...ive been meaning to try it any help is welcome

thanks
Dhaval

 

Hi Louise & Mark

Long time no speak - how are you both doing? I have stopped wearing the ANM & am feeling much happier, my T.seems to be pretty much back to how it was at the start - which is obviously not nice, but it's what I can cope with & accept. The main thing is, because I'm not wearing the device any more, I don't think about my T.half as much anymore - as I was 9 months ago before I started the trials. My T.still has spikes & bad days - you know how it is - but I feel I'm coping better again.

I decided not to have my back operation for the time being, spinal fusion is a dodgy op with not great success rates & as I'm managing ok for now, I postponed it for the time being. I know I'm delaying the inevitable but I needed to get back on top of my T. & I was dead worried what anethsetic would do to it.

Hope you two are doing ok?

Debs

 

Hi debs

My apologies for asking you a question to a previous thread. I realise Now that the ACRN thingy didn't help you much....sigh........
But hey all is not loss good to her that you're atleast back to place you can manage. I wish you all the best and hey we're all still around for the bad days ......take care

Dhaval

 

Hi Dhaval

Thanks. Sorry, I don't have any idea what me frequency was/is, all I know is that at one of the re-programming appointments my left ear was too high for the device, so I had to have a break, then go back & have it done again. The thing with the re-programming is that you just don't know how you will be on that particular day - and chances are, the pitch has changed again by the time you get home! My T.is very high pitched most of the time, almost like a squeal in my left ear at times, if that is any help. The other thing I've noticed is that since stopping the device my hyperacussis has improved too; the rumbling noise also seems a little better. Might all be a coincidence of course, but I don't think so.

Are you still considering getting the device?

Debs

 

Hi@debts

Thanks for messaging back....good to hear that your hyperacuosis is better...hang in there......well I know how confusing getting your t pitch can be....oh hav I struggled....well mine's the same thing a v high frequency teeeeee........like those old tv sets. And a bunch of others in my left.

Well I would consider it only as a last resort.....i've started on HBOT. Since although mine started in Feb....it got worst only in may....and I suspect it may be noise related......no harm trying right.....so far 2 dives in...the 1st felt awkward as I developed some optic effects....things were too bright and colourful I suppose.....odd I know...panicked but days dive was ok no such trouble.....regards to effect on t it's too early to judge.

I'll update the HBOT blog if any ones interested.....been taking some supplements too.

Hope you hav a great day .....cheers

 

Ooh. Sorry I meant@ debs ....its this phones T9....
Does strange things sometimes
Cheers
Dhaval

 

Yeah, i read that yesterday, there are also a few new "testimonials" on the official website. Marketing ?

 

My daughter adjusted the DIY file to top tone +5dB , next to top +2dB, lowest note -2dB, and next to lowest at 0dB.
This equalized the pitches so all the notes sound just as loud, and I can turn the volume on real low and still hear everything equally.

 

Hi,
Could someone who was on the trial answer my question? if I only have tinnitus in one of my ears should i still listen to this in both ears or just in the one with tinnitus?

 

Hi, I am not on trial, but I do hold an MD degree, etc., so I have completed a lot of medical training, plus talked to lots of very expert people about tinnitus, etc. etc. The volume is set at the lowest possible level that you can hear it, and the brain has a huge number of fibers that cross over and link both sides up - so I would believe that having both ears hear it would be better. Due to the quietness of the tones, for sure there will be no harm. Also, this is still experimental so no one will have a for sure answer - but that is what I would be comfortable with.

 

@Marton As you say, it's experimental so difficult to say. Mine is in both ears so I had a different tone in each on the trial. I guess though that for the sake of balance you would want the tone in both ears, it feels more natural to perceive it this way. Personally, I can't stand to have just one ear hearing something.

 

Thanks both of you! Did you start feeling something right after the beginning of treatment btw? I've been listening to this for 3 days now 4 hours a day but not much happened so far

 

It didn't really work for me, but other people who seem to get a benefit from it tend to report some sort of a change quite soon after starting to use it.

 

Maybe it has to be super bad for you to get an effect. That guy in the article had T so loud he couldn't hear people talking to him. That's like.. A completely different league than what I'm struggling with.

How loud is your sound(s), Steve?

 

Well mine feels like it got louder...i dont know whether its because i pay more attention to it...

 

Mine is loud enough to be heard over most things, I need to be in a bar / cafe / crowd level of noise for it to be masked - or listen to specific sounds.

 

ANM Adaptive Neuromodulation GmBH have filed for bankruptcy with the Cologne Court in Germany on 1 October 2013.

See link with the filing:

http://www.indat.info/insolvenzen_gerichte/K%F6ln.html

 

Hi. I would like to give information to those people who is considering "Acoustic CR Neuromodulation" therapy. I live in Turkey, but as this therapy is only available in few countries in the world, I went to one of them (Germany) and visited an authorized clinic there.

Initial assessment tests took about 2 hours to complete. After the tests, they tried to determine my tinnitus pitch.


What I learned there that this therapy is only for "tonal" tinnitus cases. (If you hear continous single-tone sound, that is “tonal”). Mine is different. It is a hissing sound, like the gushing of the wind, similar to white noise. Unfortunately I learned that, as my tinnitus is not tonal,

I'm not eligible for this therapy. So please be informed that unless your tinnitus is "tonal", Acoustic CR Neuromodulation is not the right treatment for you.


The responsible person in the clinic said that they have achieved pretty good results if the patient has a tonal tinnitus. Now, I would like to give information about the therapy which I learned from the clinic.


THERAPY and NUMBER OF VISITS: After the intiail assesment, after they determine your tinnitus pitch, they upload a custom-made sound to a match-box size device. You have to listen the device about 4-6 hours per day. After listening the sound, the pitch of your tinnitus changes. And at your next visit to the clinic, they determine your new pitch and accordingly upload a modified sound to the device. This continues until the device decrease your tinnitus volume. It means you have to frequently visit the clinic during the therapy. So unless you live in the counties which are offering this therapy, you have to fly up there about 6 - 8 times. Please note that normally therapy completes took about few months.

(Note: The doctor told me that in only single case, a patient said that his tinnitus is gone, after listening the sound after one visit. But it is atypical.)


PRICE: For the intial assesment price, I paid 270 EURO. (= 370 US Dollars). (I could not pass to the therapy phase, for the above-mentioned reason.) But if you are eligible to take the therapy, I learned from the clinic that total price 2.800 EURO. (= 3830 US. Dollars).

However they said that if the therapy fails for you, they return your 1500 EURO (= 2000 US. Dollars).


List of therapy providers can be seen in http://www.anm-medical.com

(It seems the therapy is available in Germany, United Kingdom, Austria, Switzerland, Hungary and the Netherlands.)


If you have any questions, I can help you.

 

I just learned about ANM's bankruptcy !

However, I do not think it will affect the treatment, as testing equipment are already in the clinics who provide the treatment and I do not think these clinics have an organic bond with ANM.
(Maybe only the problem would be availability of the match-size-box device)

 

Hi Louise & Mark

Just wondering how you both are?

I've not been too bad, in fact the summer months were comparatively good - especially after I stopped wearing the ANM; I would say that device set me back massively, I had to learn to habituate all over again. Now that the weather is damp again my T.has increased, as it always seems to do at this time of year, but the usual stuff is helping - sound machine, relaxation & trying not to get too stressed. How's things with you two?

Debs