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

I don't think people will ever understand the gravity of this condition. We're all weird psychology cases with some silly noises inside our heads, They will never value us correctly, we will never receive the respect we deserve for having to live our days with this horrible illness..

Getting over this condition and being able to live your life is the hardest thing you'll ever do. My T is about most of the time unbearable for me.. But what else is there? Suicide is never the answer like you said. I'm not that type of guy. Never have been. It's about the association you make between the T and how you feel about it. Do something with your life you haven't done before. That way you can say to yourself later in life that even though you suffer from tinnitus it made you realize things and decided to better yourself. I know it sounds tough but I'm currently suffering from a major spike due to stress and loud noise exposure. I don't know if it will die down. But it's about accepting as it is. And try to keep your mind off of it. I keep hitting myself on the head for making it worse constantly. But deep inside I know that's illogical.

Just so you know I feel your pain bro. But try to hang in there.. If I can do it you can do it too. Just wait it out. Relax as much as possible. But wait it out. It might get better or you might eventually habituate. Either way happiness can be found again!!

Thanks for your reply Jimmy, much appreciated. There is no way I'm going to give up or let this illness rule my life, and nor are you by the sounds of things - I admire your strength and thank you for your words of encouragement. We are the strong ones, but there are many who suffer from this condition who do not have that level of resilience. A friend of mine came close to suicide after developing severe T. Reading some of the posts on this site from T sufferers and seeing how distressed and upset it makes people gives serious cause for concern. Like you say, it seems that this is not a condition which is taken too seriously by many doctors in the NHS.

Earlier today I submitted an initial e-petition to the government about the lack of a treatment on the NHS which is already available to those with the means to pay for it privately. As soon as it is reviewed and made official I will post the link on this forum. My plan is to start a Facebook campaign to raise awareness of this issue and gain a minimum of 100,000 signatures to force government action. Ambitious I know, but you have to start somewhere...

To anybody reading this who is suffering from tinnitus, do not suffer alone - we are ordinary folk from all walks of life who have this condition through no fault of our own. It is normal to feel a sense of anger, despair and injustice - denial even; that this is something which happens to other people. There are millions of us out there and if we get together and demand resources are put into treating this debilitating condition something can be done.

Hi guys sorry to hear of your plight.I have suffered with t for over seven years and for the first year I thought I was going mad.I saw ENT and a hearing therapist and like you felt no one understood. I found keeping a diary very helpful'kept busy and learnt some relaxation techniques I used before sleep' gradually things improved and I habituated my t is still there but it no longer rules my life. Sending you positive thoughts and best wishes x

Thanks Julie, people like you give us all hope. I have started the e-petition to try to raise awareness of and funding for tinnitus research and treatment; to sign this petition go to

http://epetitions.direct.gov.uk/petitions/62987

Best wishes and good luck to us all.

That's a great idea will add my name its frustrating when there are treatments available that can only be accessed by the few who can afford them.I guess I did my own version with what I had researched on line. I found it was mainly about control either it controlled you or visa versa I honestly never believed at the begining I would get my life back but now there are days I don't even think about it so take heart you will be okay

Hi Stevie.  my name is Allan and I too am having a bad time with Tinnitus right now. I have been doing some research into the Acoustic Neuromodulation therapy and have learnt that a trial has just been completed in  April at Notts University and results are awaited. I phoned the British Tinnitus Assoc this morning after a particularly bad night with my Tinnitus and they told me they are waiting for the trial results and then they will publish them on their website.

I developed Tinnitis in 2005, when I was 42, following a throat infection but it was bearable and came and went and I never heard it when out on walks or out of the house. However, back in February I had to go on two courses of antibiotics for a kidney infection and 2 days into the 2nd course I got a high pitched, loud ringing which 6 weeks later has not lessened. This has now been joined by a lower pitch (also loud). Both are driving me mad and affecting my sleep and making me feel very low in spirits. I am now considering going fot the initial consultation at the British Tinnitis Clinic as the NHS don't do much (had scans in the past which were all clear so nothing further offered). This really is a terrible condition and I, like you, have been trying everything including radios on in every room and have downloaded some good natural sound apps from the Playstore on my tablet and have been going to sleep to the sound of a stream or waves, which does help. Birdsong helps too. The mornings sre the worst - I regularly awake st 3am feeling very anxious and have a constant fear the T is going to get even louder.

We do need to raise awareness about this condition which the BTA informed me affects around ten percent of people.

Lets hope the trial has been a success and will soon be offered on the NHS

Regards

Allan

Hi, I believe a trial is underway by Nottingham University HNS Trust. This is the web address http://clinicaltrials.gov/show/NCT01541969

It appears that the trial ended in February but the results haven't been published yet.

Reading other details elsewhere, the trial may have been funded by interested parties but hopefully it was conducted properly. It seems that earlier trials showed the device was beneficial in many cases but it wasn't exactly clear why and so the latest trial was aiming to find out if the special sounds produced by the device are better than a placebo sound from the same device.

Fingers crossed this treatment really does work and the NHS can offer it shortly but I guess as it's expensive and requires specialist skills to set up for each patient my guess is we may not be offered it on the NHS all that quickly.

Hi,

I've had tinnitus for 18 months, and I too have come to a dead end with help for my tinnitus. Basically been told there is nothing can be done so deal with it! It's very frustrating to say the least. 

 I have signed your petition and tweeted it to many. I just want to thank you for trying to get fellow sufferers some help and recognition. 

Hi Steve,

I got basically the same treatment, only mine was more a 'pat on the head' rather than the handshake! You're left feeling..."So what do I do now?!"

I've been on the BTA website and read up on the info with regards to the treatment, I would have signed myself up for clinical trials if I knew there were any. Oh well I'm keeping my chin up and staying positive, I'm not going to let it beat me!

Good luck & best wishes

 

Hello Stevie,

I've just come across your post, and think your petition is a great idea and shall sign up. I've had severe tinnitus and hypercusis in my left ear for a year now, and it has indeed hugely impacted on my life and, as my husband put it, made me half the woman I was before (this was said in sympathy, not criticism, he has been a great support and he has infinite patience, for which I am very grateful).

The reason I'm replying to you post, however, is that my severe tinnitus and hyperacusis were the immediate outcome of a visit to The Tinnitus Clinic in London, which you refer to. They did a Loudness Discomfort Test up to 100 decibels at various levels in May last year, which resulted in the hyperacusis, which was quite new to me, and much worse tinnitus. So it's not the case, sadly, that money can buy you a cure. In my case even contemplating undertaking this expensive treatment led to profound damage - I'd be interested to hear of anyone else who has had a similar experience as the result of an LDL test (I also have new hearing loss in the left ear as a result, which has puzzled subsequent audiologists). The tinnitus I had before I went was mild, didn't affect my work, mood or sleep, just interfered with my ability to enjoy piano music. You can imagine how stupid I feel now not to have just put up with it.

I have however taken a positive from it, as Jimmy suggests - I found the planes where we were living intolerable and we have now bought a small house by the sea in the Outer Hebrides, and it looks as if this is going to be our permanent home. It's very peaceful and very beautiful, and a complete change of life.

More research will surely lead, if not to a cure, to a way of reducing the severity of the effects of tinnitus (and hyperacusis), so I take my hat off to you for your initiative and refusal to take this lying down!