Acoustic CR® Neuromodulation: a New Treatment for Tinnitus

[jazz]

Sounds like a plan! Just be cautious in case the T gets louder. Chances are it won't, and it might even help!!

 

[Mark]

Hi Mark, mine was caused (or emerged) through one night out too. When you say it lowered to tolerable levels, did you do anything or was it just time that made that happen? Thanks.

Hi Louise,

Again sorry for the late reply, I don't get notification emails when a response happens on the forum and I often forget to check in to see new entries.

Tough question to answer as to what caused the tinnitus to lower, it just kinda happened over a very long duration as well as after trying different kinds of treatments. During that time I was also very careful with my hearing and what type of noise I was exposed to in order to not worsen the Tinnitus.

As for what treatments I tried, I tried all sorts of treatments such as acupuncture, reflexology, cranial osteopaths, Tinnitool ear Laser, Maskers, My own form TRT, relaxation techniques, Diet supplements, mediation, simple head massage etc etc.

They all helped in their own little way, but only as a coping mechanism. but again once you start to cope better you start to pay less attention to the T.

The best thing to do is keep very active with work as well as exercise and try get into a good sleep routine while always having some way to mask the tinnitus when ever it bothers you. I use ear phones with my smart phone and play a number of sounds constantly at a very low level so I can hear my tinnitus but also the playing sounds, and doing this a lot will eventually train your brain to pay less attention to the tinnitus. A good smartphone application I use is called Relax & Sleep, its free and is available for Android and IPhone. Its an excellent app and comes with lots of various sounds to help relaxation as well as masking, I use a combination of white noise, brown noise, campfire and air conditioner to help mask my Tinnitus. At night time in order to sleep I use an additional application called Brainwave Tuner, and I use the sleep induction setting along with the relax & sleep sounds in order to mask out my tinnitus completely (sounds played at a volume just above my tinnitus level) and this allows me to get asleep (does take a little getting used to, but stick with it and it def works). I also invested in a pair of sleep phones which are very comfortable to wear while sleeping and work with most smartphones and mp3 players. I bought mine on Amazon and Ebay but they have a website as well: http://www.sleepphones.com/ . I found that approach to really help me anyway, maybe some of the above can help you as well.

Best,
Mark

 

[Markku]

Very nice post, Mark.

You've tried the whole bunch of treatments.

And this sounds so true: "They all helped in their own little way, but only as a coping mechanism. but again once you start to cope better you start to pay less attention to the T."

If only more doctors would at least try something, refer to some treatments... it would at least be "doing something" about it. Sending home is the sucky thing to do.

Different kinds of treatments right at the start would likely help get through the worst times, that is the beginning itself

I'm waiting for the results of the trial. I'm not expecting much truth be told, but any small piece of good news would be welcome... maybe by next year we are wiser?

 

[Louise]

Hi Louise,

Again sorry for the late reply, I don't get notification emails when a response happens on the forum and I often forget to check in to see new entries.

Tough question to answer as to what caused the tinnitus to lower, it just kinda happened over a very long duration as well as after trying different kinds of treatments. During that time I was also very careful with my hearing and what type of noise I was exposed to in order to not worsen the Tinnitus.

Mark

Thanks for this Mark. I have another question! What type of noise will you not allow yourself to be exposed to?

Oh, also, what did you think of the Tinnitool?

If you want to receive email notifications then you 'Watch' the thread and you get a selection as to whether you want to receive an email or not.

 

[Debjj]

Hi Mark

How are the trials going for you? I was there last Thursday (21st March); it was not a good day! My journey was disrupted by an issue on the tubes, so I was over an hour late. When Amy did the matching process she said my left ear was now too high to be pitched/programmed into the device, so I have to have a 3 week break, then go back & be tested again. Personally, I can't say I really notice any change or improvement to be honest. I was shocked by get analysis & I wonder if in fact it was just higher due to my stressful journey. Naturally she wouldn't say whether it was good or bad, just that other people have had to have breaks too. What's happening with you & your device? I go again on 11th April by the way.


Thanks for the mention of those apps; I've got an iPhone so I'll be downloading & trying tonight! I use a sound machine at night, mostly the early morning bird song, it works pretty well for me - I guess it's what you get used to & can tolerate.

I have to say that since stopping the device last Thursday for my 3 wk break - I really miss it! I didn't think I would, but it's become part of my life & even though I don't feel it's done much (so far), I would actually rather listen to the device than my own tinnitus. See what happens when I go back.

Hope you're doing ok with yours

Debs

 

[Sam]

It's a little disconcerting to read from several people that they can mask their T, because mine is way too loud to mask. Fortunately it's not that loud all the time, but about 50% of the time it is. I'm glad many people can mask theirs, because when mine is at it's loudest, I can understand why some people commit suicide with this condition.

I'm considering talking to an audiologist about trying the ANM, since many people seem to have good results. Right now the only way to cope is with Xanax and large doses of Ambien at bedtime. Staying busy helps sometimes, but once the very loud ringing starts, even that does no good.

I'm glad to find this forum. I'm sure it will be good to talk with other people and see how they're coping.

Note: I actually have had T in my right ear since 1971, due to a blunt force trauma to my head which caused deafness and T in my right ear. Then I developed T in my left ear about 10 years ago, but the T in both ears was at an acceptable level until two weeks ago, when the extremely loud ringing started in the left ear.

 

[Louise]

Hi Debjj,

So its made your T higher in pitch and so high that its now outside the parameters of the machine? Doesnt exactly sound good that does it? I hope it comes down for you. Do you know that you've got the real setting and not Placebo?

 

[Louise]

Gosh Sam, what happened two weeks ago? Its a good thing is 'only' half the time, thank goodness. Could you mask with the proper 'over the ear' open fit maskers? As they are really close to the ear (well, the noise comes out inside the ear actually).

 

[jazz]

Hi Everyone,

Has anyone significantly benefitted from CR Neuro? Does anyone know someone who has benefitted? There's at least one study that does talk about people benefitting. But, as with SoundCure, it seems like no one on the tinnitus boards has benefitted. Call me a skeptic--in my heart, I believe someone must be benefitting--but it's just so odd that there's no success stories!!

 

[Louise]

Hi Jazz,

I know second hand of a huge success story with the ANM. I trust the person that told me and he knows the lady who got the results personally.

I always think that not all T sufferers post on forums, (just check how many 'Guest' viewers are on here at any one time as opposed to members), and so we may never hear from the ones who are helped.

Or, it might be that it only helps a small proportion!!

We should have the test results soon. There must be a lot of success with it as they are trying to get it into the NHS for us in the UK.

 

[jazz]

Hi Jazz,

I know second hand of a huge success story with the ANM. I trust the person that told me and he knows the lady who got the results personally.

I always think that not all T sufferers post on forums, (just check how many 'Guest' viewers are on here at any one time as opposed to members), and so we may never hear from the ones who are helped.

Or, it might be that it only helps a small proportion!!

We should have the test results soon. There must be a lot of success with it as they are trying to get it into the NHS for us in the UK.

Louise,

If the NHS does approve ANM, it will prove that a sizable number of people do benefit. BTW, for the first time in eight days my tinnitus is LOUD. Not a 10, but a 7-8, and it's only mid afternoon. (It always gets louder at night.) I don't know if it's because I took 2 ibuprofen yesterday, or am I just having a bad day. I did wake up with NO noise. I'm also off my inhaled steroids, which might be it. I have a cold, and you just shouldn't do steroids with a cold. It's funny--sad, really--that before my tinnitus I rarely took medication, especially anything that could remotely cause cancer, like steroids. But once you get tinnitus, it's like "I'll try anything!" How pathetic!

 

[Louise]

Well I'm a fellow 'Pathetic' then Jazz. I've always hated prescription drugs and look at me now; Pregabalin. Clonazepam and Mirtazapine. That's how I was when I couldnt function "Just give me anything!"

I honestly think Ibuprofen is a bad idea because its linked to T. I think your raised T is probably due to the effect of the aids - I was told that at the beginning they can make T louder (worse). It makes sense for it to be changeable as the brain gets used to the new levels of sound and reorganises itself.
No T in the morning though Jazz, wow. That must've felt good.
I'm sure you'll be talking to your audiologist about the potential effects of the aids on T.

 

[erik]

ANM worked for this guy in this article posted today

http://www.express.co.uk/life-style/health/386922/A-gadget-switched-off-my-tinnitus

 

[jazz]

Thanks erik for the ANM success post!

Putting a face on all these sterile research reports truly gives you hope! I also liked that he had tinnitus for numerous years--as many as a dozen from the article. That's so hopeful. Most research suggests the longer one has tinnitus, the more difficult it becomes to treat.

 

[Aisling]

This is really interesting erik. I was contacted about the trial I am hoping they will accept me. Is a hum regarded as tonal??

 

[erik]

Good luck with the trial, I hope it works. Not sure if the hum is regard as tonal. If it is constant and always the same then it would probably qualify.

 

[Aisling]

Yes it's constant and always the same so hopefully. Thanks

 

[jazz]

Good luck !! Keep us posted, and don't be discouraged it the progress is slow. I believe the article said something about two months before you might see progress. Sometimes, I believe people just give up too easily.

 

[Mark]

Very nice post, Mark.

You've tried the whole bunch of treatments.

And this sounds so true: "They all helped in their own little way, but only as a coping mechanism. but again once you start to cope better you start to pay less attention to the T."

If only more doctors would at least try something, refer to some treatments... it would at least be "doing something" about it. Sending home is the sucky thing to do.

Different kinds of treatments right at the start would likely help get through the worst times, that is the beginning itself

I'm waiting for the results of the trial. I'm not expecting much truth be told, but any small piece of good news would be welcome... maybe by next year we are wiser?

Hi Markku,

Yes I agree, when a person first gets Tinnitus its very frightening and is usually at its worst because its so new and so very strange. During this period, treatments have to be put in place to help people cope. Just trying a treatment often helps as it gives hope and the sensation of trying to do something about the issue.

I hear the treatment being developed in Dublin is looking promising. Its called MuteButton, def one to keep an eye on. Also another one developed by Irish students called Restored Hearing but this web site is aimed at temporary T, although they are currently investigating how to treat chronic T. Another website you might want to check out is called AudioNotch, it offers plenty and info and provides a way of creating a noise matched to your T frequency. Although these are not free treatments I'm afraid, however considerably cheaper than ANM.

best,
Mark

 

[Mark]

Thanks for this Mark. I have another question! What type of noise will you not allow yourself to be exposed to?

Oh, also, what did you think of the Tinnitool?

If you want to receive email notifications then you 'Watch' the thread and you get a selection as to whether you want to receive an email or not.

ah thanks Louise, ill do that.

I basically do not go to loud pubs or night clubs anymore, and when I do go out anywhere that I know will be loud such as exceeding 65 or 70 decibels, I make sure to wear ear plugs. I have two pairs, a generic ER20 ear plug and a custom fit ER25 ear plug. I measure the dB level with an app on my smart phone but I also just know when something is too loud for me.

I carry the ER20 ear plugs on a key ring, and just use as needed, for example going to cinema, or theater show, at a house party etc etc,

I used the Tinnitool for a good 6 months or more non stop, and I actually found it did help my hearing. Before I started I had very sensitive hearing (hyperacusis) and hearing sounds was sometimes distorted such as certain sounds would make my ears click and buzz. I found the laser really helped improve this area of my hearing after around 3 months, but after that it did not improve any further and had no effect on the T.

best,
Mark

 

[Mark]

Hi Mark

How are the trials going for you? I was there last Thursday (21st March); it was not a good day! My journey was disrupted by an issue on the tubes, so I was over an hour late. When Amy did the matching process she said my left ear was now too high to be pitched/programmed into the device, so I have to have a 3 week break, then go back & be tested again. Personally, I can't say I really notice any change or improvement to be honest. I was shocked by get analysis & I wonder if in fact it was just higher due to my stressful journey. Naturally she wouldn't say whether it was good or bad, just that other people have had to have breaks too. What's happening with you & your device? I go again on 11th April by the way.


Thanks for the mention of those apps; I've got an iPhone so I'll be downloading & trying tonight! I use a sound machine at night, mostly the early morning bird song, it works pretty well for me - I guess it's what you get used to & can tolerate.

I have to say that since stopping the device last Thursday for my 3 wk break - I really miss it! I didn't think I would, but it's become part of my life & even though I don't feel it's done much (so far), I would actually rather listen to the device than my own tinnitus. See what happens when I go back.

Hope you're doing ok with yours

Debs

Hi Debs,

Sorry to hear about your frequency increase, I hope it improves for you soon. I am sure it will. I actually did not travel this week due to work and weather issues. I have to re-arrange another appointment.

I agree, Id rather have the device than be without it but I do find I am starting to use it a bit less than I did for the first 6 months. Ill keep with it though. I had some issues with trains my last journey as well, had to take nearly a 3 hour detour to get back to the airport, luckily had a long wait for my flight so made it there in good time anyway. Still not fun when that happens.

I hope you find the apps useful and that you are also doing well as can be with your T.

Best,
Mark

 

[david c]

I didn't see this thread when I posted on neuromonics yesterday.

Anyway just to confirm some of the info on this thread. In the UK this treatment is very expensive mainly because there is a monopoly provider here. In Germany where it is licensed to quite a number of practices it's quite a lot cheaper.

A clinical trial of the treatment is underway at Nottingham University at the moment but my understanding is that it won't publish until next year or at least some time away. I think there has been one smaller trial which indicated some improvement but in a short time frame.

Personally, I'm very dubious about some of the claims made about this treatment particularly because of the large sums of money involved. The key test is whether it performs significantly better than standard sound therapy treatments such as white noise therapy.

 

[Louise]

I know where you're coming from David, but do you know that it is The Tinnitus Clinic (that 'monopoly provider' you describe) which is funding the trials? They are putting their money where their mouth is. They must have a huge belief in it to do this and they are the ones who see the results in patients.
Also, they are hoping to get this product into the NHS so T sufferers in the UK can benefit for free.

 

[david c]

Hi Louise,

Yes I believe you're right that the tinnitus clinic are funding the Notts trial which, as you say, does show a degree of faith in the product. Of course getting a clinically validated trial which provides evidence to support neuromodulation is good business sense for them - if the trial supports the product that will provide great advertising and if attracts only 20 more customers that would be around another £100,000 more income for them.

As for getting this into the NHS I think giving the current funding situation chances of that happening are slim indeed. But the main thing is to get more info as to whether (as it claims) neuromodulation actually offers something more effective than standard sound therapy treatments. Hopefully the trial will provide the answer to this.

 

[Louise]

I think it shows more than a 'degree' of faith in the product! It must be costing them an absolute fortune. If it was as flaky as is suspected by most people they wouldnt be throwing their money away on this trial. They've obviously seen it work and now they want that backing up with clinical evidence.

Its still only for some types of T though, and not mine I dont think.

Well, if the evidence comes out good and the NHS wont take it on then that's the time all T sufferers should take to the streets in protest!

Ps. The same trial is going on in London too, its not just Notts.

 

[david c]

I think the tinnitus clinic will get their money back easily if the trial proves successful given the validation of the device it will provide and the huge amount they are charging for it.

I completely agree with you though that if an effective treatment is found but the NHS won't fund then we really should take to the streets in protest - not that that usually changes much in the UK, but we can but try.

 

[Markku]

Counteracting tinnitus by acoustic coordinated reset neuromodulation


Abstract

PURPOSE:
Subjective tinnitus is associated with pathologic enhanced neuronal synchronization. We used a model based desynchronization technique, acoustic coordinated reset (CR) neuromodulation, to specifically counteract tinnitus-related neuronal synchrony thereby inducing an unlearning of pathological synaptic connectivity and neuronal synchrony.

METHODS:
In a prospective, randomized, single blind, placebo-controlled trial in 63 patients with chronic tonal tinnitus and up to 50 dB hearing loss we studied safety and efficacy of different doses of acoustic CR neuromodulation. We measured visual analogue scale and tinnitus questionnaire (TQ) scores and spontaneous EEG.

RESULTS:
CR treatment was safe, well-tolerated and caused a significant decrease of tinnitus loudness and symptoms. Placebo treatment did not lead to any significant changes. Effects gained in 12 weeks of treatment persisted through a preplanned 4-week therapy pause and showed sustained long-term effects after 10 months of therapy: response, i.e. a reduction of at least 6 TQ points, was obtained in 75% of patients with a mean TQ reduction of 50% among responders. CR therapy significantly lowered tinnitus frequency and reversed the tinnitus related EEG alterations.

CONCLUSION:
The CR-induced reduction of tinnitus and underlying neuronal characteristics indicates a new non-invasive therapy which might also be applicable to other conditions with neuronal hypersynchrony.

 

[Louise]

I think the tinnitus clinic will get their money back easily if the trial proves successful given the validation of the device it will provide and the huge amount they are charging for it.

I completely agree with you though that if an effective treatment is found but the NHS won't fund then we really should take to the streets in protest - not that that usually changes much in the UK, but we can but try.

Of course they'll easily get their money back if they get good results but if they dont get the results then they've lost that money and most probably will be ruined going forward! That's the faith they must have in that treatment and it cant be blind faith as they see people using it every day. Thats the point Im trying to make.

Since when did the Brits protest? I dont mean those awful riots either. Arent we just 'sit back and take it'?

 

[carlover]

Can I ask ,are you sure they are funding it (the tinnitus clinic). Ok they have the sole Licence to market this in the UK. If succesful trial (whatever success means ,they better not get too many of me) what then? Does theNHS thenbuy the units through the Tinnitus clinic.? I know Mark the head audio is/was involved with setting up the trial so Its all a bit curious.

 

[Louise]

The Tinnitus Clinic are funding it.

I dont know what the success criteria will be but Im guessing something like 'complete remission, '50% reduction' etc.

I dont think your T is tonal enough for the device is it Pete? Im sure I've heard you talk about jet engines? Thats not a tonal sound. The device can only work on tonal T.