Acoustic CR® Neuromodulation: a New Treatment for Tinnitus

[pen]

Hi Debjj,

Pen here, I was the person asking the questions, thank you so much for taking the time to reply to me, I am really glad it is working for you.
Could you tell me before you started the treatment was you T always at a constant level, also what does the screening involve.
Thank you.

 

[Debjj]

Hi Pen

No, my T.was and is, not always the same level. It started 8 years ago after a virus in my ears. Initially it was much worse in my left ear but with time, the right became pretty much equal. Over the years I have had some truly awful times and even now, it's still freaks me out. Catarrh is the work of the devil & always makes the T.much worse. But sometimes it flares up for no apparent reason. I have woken in the night with it absolutely screaming & there have been those days that I'm sure you have had, when you think you will never get through it. But we do!

The screening involved LOADS of questionnaires, asking stuff you would think completely irrelevant! Computer tests trying to match your tinnitus & hearing tests. I think it is not only about your specific T. But whether you are of sound enough mind to be able to cope with the trials. Wise, when you think about it!!

 

[Louise]

Hi Debjj, was your T tonal, ie. a noise of just one obvious tone rather than like static of hissing?

 

[pen]

Hi Debjj,

Thanks for replying to my questions, I hope things keep improving for you. Would be greatful if you could keep us posted on this.

Thanks again, pen.

 

[Debjj]

Hi Debjj, was your T tonal, ie. a noise of just one obvious tone rather than like static of hissing?

It's mostly tonal, sort of deep, if you know what I mean, with a background of hissing. All round nightmare really! What is yours?

 

[Louise]

So did they say the ANM will only get rid of the tonal and not the hissing? I think that's the case.

Mine is a lot of different sounds and its been changing a lot. Mainly its like high-pitched electrical noise, sometimes like flowing electricity so theres a lot of movement in the sound. It also has like adentists drill sound in it where the sound sears in and out and up and down.

 

[sharon]

Ditto Louise!

 

[Debjj]

They haven't said what it will or won't get rid of; they don't tell you anything, they say that's all part of the trials. All I know is what I have been able to find out on the net & on here.

Mine used to be like morse code in my right ear, but I had a really bad spell last year & it changed to tonal, like my other ear.

What 'treatments' have you tried & how/when did yours originate?

 

[Louise]

Ditto Louise!

Hi Sharon, its comforting to know that someone has the same sound as me because I thought I'd changed it to something no-one else has through a home treatment I tried! Not that I wish it on anyone of course

Ps. Have you seen the date your T started? You still have time to avoid it

 

[Louise]

They haven't said what it will or won't get rid of; they don't tell you anything, they say that's all part of the trials. All I know is what I have been able to find out on the net & on here.

Mine used to be like morse code in my right ear, but I had a really bad spell last year & it changed to tonal, like my other ear.

What 'treatments' have you tried & how/when did yours originate?

I guess that makes sense for them not to say anything much.

I got mine from listening to a live band in a small pub where its was simply too loud. I was at the front and I didnt move away, which I couldve done easily.

I've tried acupuncture, Scenar, Procaine injections (anaesthetic), HBO (though I was too late starting it and didnt do it regularly enough due to claustrophobia), Soundcure Serenade, Hearing Aids. Think that's it.

 

[click]

So did they say the ANM will only get rid of the tonal and not the hissing? I think that's the case.
Mine is a lot of different sounds and its been changing a lot. Mainly its like high-pitched electrical noise, sometimes like flowing electricity so theres a lot of movement in the sound. It also has like adentists drill sound in it where the sound sears in and out and up and down.

I know mine fluctuates more than yours Louise but the sound you describe is basically the same as mine. In fact it's almost the exact description I gave to the ENT chap when I saw him in the early days. It's never been in my ears, always in my head, but it moves all around and frequently fills the whole head, or the back of the head or down near the ears... it screeches & darts across the whole head (dentist drill in it) whilst buzzing in a wider area simultaneously.

 

[Louise]

Its not just me then. Mine has started up in earnest in the other ear now and that is higher pitched and a constant sound. I've also got some 'whole head' stuff but I think I get that when the other (previously good ear) starts up. Im sure that ear doesnt have it in all the time though then sometimes its louder than the first ear. So hard to cope

 

[Mark]

Very interesting Mark, thanks for posting this. Have the trials come to an end now and were you part of the trials based in Nottingham?

Could I ask, if your T tonal (must be to be accepted?) and did you find it easy to pitch-match it?

The ANM is definitely supposed to me more than a masker. It seeks to excite specific neurons with the aim of busting up the pathologically synchronised neurons. Thats what their algorithm does based on your pitch-match.

Hi Louise,

Sorry for my late reply. No, the trials are currently still in full swing, I am over half way through the trial. Yes my T is tonal, but I am unsure if this is a prerequisite for inclusion in the trial. During some of the T matching programs it does ask you if your T matches a Tonal sound, ringing sound or beating sound. So based on that I am guessing tonal T is not only required.

Yeah I know the ANM is not meant to be a masker, but for me I just don't see it as anything else really. However, I did get the device reconfigured this week so I only started back on the treatment today. Will leave ye know if the headaches and sleep issues return or not. So far so good.

 

[Mark]

Hi Mark

I think perhaps we are on the same trials. I found out last week that I too have been on the treatment & not the placebo. Thanks for posting about the headaches - I have been having some really bad headaches for the past 6 weeks. I actually saw my GP last week as I was getting worried. I hadn't really connected it to the tinnitus device although it had crossed my mind. I had my device reset last Thursday & my head seems easier. It may of course be a coincidence, time will tell! See, they don't tell you anything, do they. I have been worried since Thursday that I have not pitched it right this time, it's so hard to get it right, isn't it? By the time you get home the pitch has changed, then what?!

Did you have any problems at the start? I developed a horrible, deep humming initially, which nearly drove me nuts. Good job we are already pretty nuts from the tinnitus!!

How far do you have to travel? Hopefully it will be worth it in the end.

Hi Debjj,

Sorry for my late reply. Yeah I think we may be on the same trial also. I go to the Ear Institute, UCL not far from Kings Cross train station for my treatment. The staff are very nice, but yeah at the start they could not tell you much about the treatment because of the trial conditions. I travel over from Waterford, Ireland which makes for a very long day, but hopefully it will be all worth it in the end.

As for the headaches, if the device is configured to the incorrect frequency and not matched to your T frequency it can cause headaches, although as well as that to be fair I think headache is common to T sufferers anyway. Regardless, I think you are spot on to be getting it checked by your GP. The headache I experienced was just a mild dull pain, nothing too serious and could be treated with a simple pain killer.

I agree, going through the configuration can be tricky and time consuming, especially at the start. After a few configurations I think I am now comfortable enough with getting right, especially as my T has not really changed much. At the start I did not have any effects at all, first side effects only came after around 4 months in the form of headache and sleep issues, these quickly subsided once I stopped treatment. I have the device reconfigured now so I will see how I get on, interestingly though I seem to be the first person to report sleep issues with the device.

 

[Debjj]

Hi Mark

Wow you have to travel a long way, I thought Bristol to London was bad enough! It's the same place that I go to. I have only ever seen one other person there at the same time as me, a tall ish guy, maybe mid fifties - he was just leaving and wearing the device, I was just arriving and was stood by Bridgittes desk - not you by any chance was it?! I am 49 & was probably looking a bit haggered! I found the journey quite stressful to begin with. Tinnitus robbed me of my confidence many years, I found it difficult in noisy environments - like the tubes, which I hate! My husband came too on the first visit and I'm fine with it now; in fact it has probably done me good.

I also tend to see the device as a masker. A week or so prior to my last visit I had realised I was not noticing my tinnitus quite so much, but then it was reconfigured last Thursday & now I have developed a loud hissing noise in my left ear, but no more headaches.

Have you noticed any changes at all?

 

[Mark]

Hi Mark

Wow you have to travel a long way, I thought Bristol to London was bad enough! It's the same place that I go to. I have only ever seen one other person there at the same time as me, a tall ish guy, maybe mid fifties - he was just leaving and wearing the device, I was just arriving and was stood by Bridgittes desk - not you by any chance was it?! I am 49 & was probably looking a bit haggered! I found the journey quite stressful to begin with. Tinnitus robbed me of my confidence many years, I found it difficult in noisy environments - like the tubes, which I hate! My husband came too on the first visit and I'm fine with it now; in fact it has probably done me good.

I also tend to see the device as a masker. A week or so prior to my last visit I had realised I was not noticing my tinnitus quite so much, but then it was reconfigured last Thursday & now I have developed a loud hissing noise in my left ear, but no more headaches.

Have you noticed any changes at all?

Hi Debjj,
Yeah it makes for a long day of traveling, but like you it has done me good. For traveling on the plane, and on some of the noisier trains I wear a pair of musician earplugs. They really help bring noise down to more comfortable levels. I only wear them when absolutely necessary as I do not want to become dependent on them and worsen my hyperacusis. I bought them from the following link http://www.tinnitus.org.uk/products/28 . Also for going to like a cinema or similar noisy location I got a pair of custom molded professional ER25 ear plugs. They can be very expensive in around 300 euro, but I have found them worth it.

Afraid it was not me you saw anyway, I am 29 year old with tinnitus brought on from a single night out over Christmas over 2 years ago. It took probably nearly 1 year and a half (trying all sorts of treatments), but eventually the Tinnitus lowered to tolerable levels. I am doing the trial in the hope of completely getting over it but so far I have not detected any change.

 

[Louise]

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.

 

[oliver]

a short and very informative clip that should interest most readers on the forum.



has anyone here experienced this treatment, has it helped?

 

[oatsey]

I'd love to see access to this in the US.

 

[Goofy]

I'd love to see access to this in the US.

I contacted the company a few weeks ago and this is what I was told.
"We found an appointed Dealer in the US and actually we are preparing our launch in the US and we hope that we are ready to provide you with the treatment mid of this year. "

 

[jazz]

Thanks for the informative video!

This sounds like a cure, but I'm skeptical. Permanently desynchronizing the main neural hubs associated with tinnitus has met with long term failure in rTMS and similar treatment modalities. The brain wants to return to its pathological hyperactivity, which we perceive as tinnitus. But treatments like rTMS do provide short term relief--so there's hope. Perhaps, ANM has found the answer. I hope so!! Even if the reduction is only fifty percent, but that amount is permanent (or lasts for a few years then can be redone)--this would be a true breakthrough. Can't wait to read the results of the current UK trials!

 

[jazz]

Ok, I found a recent article on Accoustic CR Neuromodulation, and it looks very promising. The article does write about a significant reduction in tinnitus, but does not specify a follow up period for the study's participants. Did their tinnitus return after six months? A year? The study also does not present the treatment as a cure for tinnitus; but it does offer evidence of the procedure's ability to disrupt neural networks, allowing for a reduction in pitch and annoyance.

The treatment is only for tonal tinnitus, however, and does require you to match your tone. That might be a problem for many people who hear more than one tone, or who can't identify their pitch. And it also means that people with hissing tinnitus won't be helped with this technology.

Still, it's great news!

Here's the article:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3319974/#B64

 

[carlover]

Sorry all Im afraid ive got the T shirt.

£4500 from The Tinnitus Clinic Harley St London.Going backwards and forwards to have It reset.

6 hours a day for the last 15 months ,what has It done to myTinnitus? Nothing,Zilch,Nada,Nout.Sweet FA.

Whats It done to my wallet? Cleaned It out.

 

[jazz]

Sorry all Im afraid ive got the T shirt.

£4500 from The Tinnitus Clinic Harley St London.Going backwards and forwards to have It reset.

6 hours a day for the last 15 months ,what has It done to myTinnitus? Nothing,Zilch,Nada,Nout.Sweet FA.

Whats It done to my wallet? Cleaned It out.

Thanks carlover for your experience. I'm sorry it turned out to be a costly waste of time! Letting people know your story, however, is the one great thing you can contribute. We all need such information. Perhaps, you can answer a few quick questions? When you applied for a trial, did they ask you how long you've had your tinnitus? How you acquired it? Or other questions about your history? It would be interesting to see their screening criteria.

I don't remember reading any negative reports on this technology, but, obviously they must exit. Nothing, after all, is perfect--especially with tinnitus. Still, all that money and nothing. That is very discouraging, indeed!

I'm a little skeptical on the tone matching. Their technology demands it. But such matching is difficult, and what if you just missed it? Or are octave confused? Or have multiple tones? And so on.... Does that mean everything is thereby rendered ineffective? I believe Daedalus posted that his tinnitus tone was ascertained by equipment--an fMRI or something. That's objective and repeatable. That's key for scientific and medical experimentation. Subjectivity is not repeatable. I, for example, may think my tinnitus is a 10 one day and a 5 on another. Is that the sound itself or my mood--which affects how I respond to the sound? Except for pulsatile tinnitus, this disease is rooted in subjective experiences, and that is a major obstacle to developing efficacious treatments. Researchers try to circumvent this by using tests like the VAS (visual analog scales), and these are better than nothing--but are more useful as an adjunct to something objective, like an MEG of fMRI.

The trials will be completed this November. We should keep track.

http://www.clinicaltrials.gov/ct2/show/NCT01541969?term=neuromodulation and tinnitus&rank=1

 

[carlover]

Hi Jazz
That trial Is lasting for 3 months ,that in the opinion of The Tinnitus Clinic In london Is too short

Let me say from the off the people I saw were very supportive decent people ,Mark the head audiologist who by the way was instrumental In setting up the clinical trial is a good man.
They reject 50% of people because of 2 things one too many different tones and two the difficulty some people have In judging their Tinnitus to the tones. You dont have to be 100% accurate by the way it will work (???) if you are slightly off ,cant remember the parameters.
Just because It didnt work for me doesnt mean it wouldnt work for someone else.

A lot of moola though but I had to risk that money ,because Ive got as much chance of habituating with this 2 year noise ,pressure Increase as I have of getting My Mrs to take down her George Clooney calender.

 

[jazz]

Thanks for the information! And I didn't know there was a George Clooney calendar, LOL!

 

[oliver]

Wow! I'm sorry to hear this didn't work for you carlover, £4,500 is a huge chunk of money.
I have been thinking of going to the Tinnitus Clinic in London for some time now and have been putting some thought into Acoustic Neuromodulation. I think I would probably struggle to keep the ear pieces on for 6 hours a day. How did you manage BTW?
It would be interesting to find out a little more about my hearing loss and tonal experiences through a T specialist seeing as my experiences with the NHS audiologists were a little disappointing.
I would love to hear some positive experiences people have had with this.

 

[carlover]

Hello oliver ,what part of London do you live ,im in Chiswick. Just like an MP3 player its easy to do you can make phonecalls listen to TV etc. If you go there make sure you see Mark ,I dont "get" the other audiolgists ,Mark Is head honcho.The best thing he did for me though was when i told him white and Pink noise I find aggravating as a masker when trying to sleep and he gave me a Purple noise Cd saying you will prefer this and he was right. I just cant think of the Money Oliver Its too upsetting.

 

[Markku]

Sorry all Im afraid ive got the T shirt.

£4500 from The Tinnitus Clinic Harley St London.Going backwards and forwards to have It reset.

6 hours a day for the last 15 months ,what has It done to myTinnitus? Nothing,Zilch,Nada,Nout.Sweet FA.

Whats It done to my wallet? Cleaned It out.

Geez carlover I'm so sorry. The prices are outrageous!!! But we all know that whatever there is, most of us like to try everything. Who knows what the final magic bullet will be? For some it could be this, for others something else...

I hope you are recovering financially from this, and at least you got one more experience, and one less treatment to try! If trying to find positives

 

[carlover]

Thanks for your thoughts guys. Just have to keep going at the moment im seeing a cranial osteopath whom Ive known for years. We sat down and he said the way I smashed my nose very badly has put all my cranial bones off kilter and if it helps and no guarantees it will take many treatments,months ,I said ok so lets see.
Ive done some research on the bones he mentioned ,Sphenoid being one ,very interesting he said that had been pushed off centre just for starters.