Will Acoustic Coordinated Reset Neuromodulation be available on the NHS soon?

Hi Karen, thanks for taking the time to write. I am so sorry to hear of what happened to you, and I hope you find some relief from the tinnitus soon. The Outer Hebridies certainly sounds idyllic! I actually did something similar to change my own life 6 months ago, and now live in a small 17th century cottage in the middle of nowhere in the Dorset countryside. This, combined with changing my job to a less stressful one has helped a lot.

It is interesting (and disappointing) to hear of your negative experience with the Tinnitus Clinic. I shall certainly think twice before throwing money at them, however desperate I get.

Good luck and best wishes

Steve

 

Hi Steve,

You might be interested to know the latest on the clinical trial that was conducted at Nottingham NHBRU (I took part and it made me worse - was on actual and not placebo).  I got a letter from them, the trial is effectively void after the peer review due to a few things so they are going to do another one.  The initil data from Germany wasn't robust enough to be trustworthy so this was the first qualty trial, the official statement is:

“Acoustic CR® Neuromodulation is a treatment for chronic tonal tinnitus. In 2012, The Tinnitus Clinic Ltd funded a 100 participant Randomised Controlled Double Blind Trial to establish the efficacy of this treatment under independent controlled conditions. 

The trial was undertaken at Nottingham Hearing Biomedical Research Unit and the Ear Institute at University College London and was sponsored by Nottingham University Hospitals NHS Trust. 

The first results of the trial were expected in September 2013. Review of the trial has, however, concluded that there have been deviations from the trial protocol and that the results cannot be regarded as scientifically robust. It is therefore with regret that all the parties have concluded that the results of the trial cannot be published with confidence. 

Nottingham University Hospitals NHS Trust and The Tinnitus Clinic are discussing a new trial on Acoustic CR Neuromodulation which they hope will commence in the near future. NHBRU, Nottingham University Hospitals NHS Trust and The Tinnitus Clinic are very grateful for the time and effort of the participants of the original trial”

Bad news indeed about the trials making your tinnitus worse. I am in a similar boat, having had much more troublesome tinnitus since my visit to the Tinnitus Clinic in Harley Street in May last year, and also, more disablingly, severe hyperacusis. I am only now, fifteen months on and a move from Oxford to the Outer Hebrides later, becoming able to deal with the hyperacusis (I've found betablockers helpful). I have been in discussion with a medical lawyer about what happened to me - I'm not interested in claiming damages, money won't help, but I would very much like to be able to direct any funds that could be extracted from the Tinnitus Clinic to proper research into tinnitus and hyperacusis, possibly under David Baguley at Addenbrookes. I would like to hear from anyone else who has suffered as a result of their "treatment" by the Tinnitus Clinic.

May i ask how they made the Tinnitus worse?

I was thinking of going to them and paying them for treatment.

I described what happened to me earlier on the forum: I went to an initial assessment and the LDL done by Naziya Ghulam test left me with worse tinnitus and hyperacusis, from which I have not recovered.

Hi Karen.  I was on the trial at Nottingham so not actually at the clinic.

One of the things in the letter that came out was about the CE marking of the device (European safety mark).  I think that my main problem was the earphones sitting right inside my ear canal, I really didn't like them and I also felt the sounds were too harsh.  Maybe there was a design fault, they said that there was insufficient information about the proper fitting of it.

Without being too much of an anorak, the device uses sine waves, the most basic sound form.  It's difficult to make them sound bad as they are the basic building block of sound, so should reproduce fine on any equipment.  It still didn't agree with me though, they seemed jarring and were also too repetitive (only 4 tones).  I make music and play around with similar techniques using sine waves, never had the same effect using quality equipment.

I had to sign a disclaimer as part of the trial but if it comes out that they did not fully consider the safety aspects then that will become void I'm pretty sure.

I had gotton over Hyperacusis after I first got tinnitus, but the trial of the acoustic neuromodulation device also brought that back.  From beginning with hope and enthusiasm the device put me back into a darker place for a siginifcant time last year, for a time I couldn't even listen to my other half talking close to me as it hurt my ears (now there's a difficult subject to broach).

Difficult indeed. I've been fortunate in that the problem has been confined to my left ear, so my husband can talk in my right ear without causing me a problem - he's also learnt to talk quietly, unnatural for him. But other people give me curious looks when I constantly dodge round to their left side.

Is the initial assesment when you first go to the Tinnitus Clinic and they put you through a few hours of tests?

Yes - but I think it was less than an hour.

Interesting, i went for that last year and came away no worse than when i went in.

Was it the headphone sound test that causes your condition to get worse?

It was the Loudness Discomfort Level test.

Mine was only in my right ear, thankfully it's subsided now although I do get it back here and there fleetingly.

Yeah i remember it.

Strange how that would make things worse but sorry to hear it did so.

Sounds like Steve had nothing but problems with Acoustic CR® Neuromodulation too.

I guess i will wait to see if the sound on my ears gets too high pitched for me to stand one day and go for it as a last resort.

Mines quite high pitched but i'm lucky enough to be able to mask it with fans / violet noise.

How hopeless this condition really makes you feel, to lose ones sanity to an invisible noise, what a world.

Hi Karen! Can you tell me more about how beta blockers help you, or who recommended this treatment? I tried to find related articles, but according to google results, most of the beta blockers are ototoxic and they cause tinnitus...