Tinnitus Desensitisation Therapy at The Tinnitus Clinic

[Jeepster76]

Hi,

I have just signed up to this forum and I thought I would put a post up about my search for a 'cure' for my tinnitus. My tinnitus started at a very loud live music gig probably about a year ago, it manifests itself as a high-pitched tonal sound (with occasional 'whooshing' when I am feeling tense or stressed). I am (so far) "lucky" enough to only have tinnitus at a level I can hear when I am in a quiet room or when I have ear plugs in my ears - I sometimes ride a motorbike. I know that tinnitus can get worse though, so I am looking to get treatment before it does.

I had a consultation at "The Tinnitus Clinic" in Harley Street earlier this month and it was very thorough; I saw both the ENT Consultant (Mr. Patel) and the Senior Audiologist (Mr. Williams) and underwent various tests.

I am fortunate enough that my Bupa cover through my job covered the £300 cost, unfortunately that's all Bupa will cover though due to the nature of tinnitus being recognised as a chronic condition.

Mr Williams recommended "Tinnitus Desensitisation Therapy" for my type of tinnitus (primary tinnitus, caused by loud noise exposure, not by a physical ailment) at a cost of £2500, this is described on their website thetinnitusclinic.co.uk/. As I understand it, the treatment involves wearing in-ear devices that play a frequency of sound that mimics my tinnitus, at a low volume, for around 6 hours a day, over a course lasting 24 weeks, in combination with listening to "purple noise" overnight through a medical phone app.

I think I will be going ahead with the treatment, after I have spoken with my GP and if I do I will post on this thread every so often with progress updates, which will hopefully be useful to others who are considering seeking out similar therapy.

All the best, John.

[Ruud1boy]

I'll be following your progress with interest. If the Tinnitus Clinic and their ilk could offer any guarantees, I'd be there now, but £2500, or even more for their 'top level' treatments, seems like an awfully large sum for something that 'might' improve matters.

I've seen lots of independent testimonials saying the services these people provide did nothing for them, whereas the positive reviews only appear on their website.

Best of luck with your treatment, I really do hope it goes well for you.

[Jeepster76 in reply to Ruud1boy]

Hi,

Yeah, it is a lot of money, but the way I look at it is that most people wouldn't blink about spending £2500 when buying a car (mine cost me £295 by the way), so when I consider it from that angle, I'd much rather spend the money on something that might help my health than on a lump of metal that will need to be replaced in a few years anyway. Also, they do offer payment plans, so the treatment costs can be spread over a period of between 6 to 18 months.

Thanks for the encouragement, I've been wearing the devices for 9 days now, so too soon to give any meaningful feedback, but one thing I did find out is that they offer a full refund (less the £250 fitting and setting up fee) for up to 6 weeks after the fitting appointment (first day of use).

[Ruud1boy in reply to Jeepster76]

The cynic in me thinks the refund offered after 6wks is just marketing fluff. If the treatment lasts 6mths, how are you supposed to know whether it's having any impact after 6wks?

I'd ask you earnestly to make sure to come back and give us all progress reports as your treatment progresses. All too often on this site and other T forums, people post about a new treatment they're starting, but that's the last we hear from them - this helps no-one.

Everyone I'm sure genuinely hopes this treatment works for you, but we need to know one way or another - maybe every 3mths, if that's not too much to ask?

Good luck.

[Suji778]

I have lost 4000 dollars trying various treatments nothing works ....sad news their is no cure for Tinnitus !!

[richard56 in reply to Suji778]

Have you exhausted all other systems therapies to make a statement like this?

[Gwynydd in reply to Suji778]

No cure at the moment. Reading this blog has made me realise how different everyone's experience is and what works for some does not for others. Sometimes what is suggested as a bad idea, is a good idea. My pulsatile tinnitus comes and goes and on the whole is not during the day. I do suffer physical symptoms like earache and neck ache. A quiet room works for me and too much noise is taboo. I am still being investigated as the noise is my heart beat. I will try anything that works for me and would never suggest that there is nothing you can do.

[Jeepster76 in reply to Suji778]

Hi,

Sorry to hear that your efforts at finding treatment have been in vain. Have you tried 'scalp acupuncture' by any chance? I happened to see this article, something that might be worth considering, as acupuncture tends to be a fairly cheap treatment: wddty.com/magazine/2018/sep...

[Suji778 in reply to Jeepster76]

Scalp acupuncture noo not tried ....now I’m used to this sounds it’s not bothering me .

[Shellipops]

Hi there,

Really hope it works for you. I'm doing ok under my own steam at the minute but I'm all too aware of how erratic this condition is. Please do keep us updated, your independent experience will no doubt help others make informed decisions in the future.

Good luck

[soul64]

Sounds interesting good luck with that. Neil

[Suziwong]

Please let us know how you get on asap. It's a lot of money but if it works fantastic. Thanks for update

[Suziwong]

Good luck do let us know how you get on.

[Woodentop99]

No news then??? Looks like a good few bob up the swanneee!!!

[Ruud1boy in reply to Woodentop99]

Reading his posts back, it looks like he only started the treatment a few weeks ago, so too early for any meaningful update.

[Woodentop99]

Ok, will hold my breath for positive update.

[Hidden]

Hope you treatment was successful..

[Jenjen12345]

Hi

Please do keep us informed regarding your progress .as I am planning to fly to uk to recieve treatment by the tinitus clinic .

Take care

Jenjen.

[Ruud1boy]

Do you have an update for us friend? Kinda pointless telling us all you're starting a new treatment and then not telling us how it went.

[Jeepster76]

Apologies for the delay. Treatment is still ongoing, the problem I had was that I move around quite a lot in my sleep and found that the overnight “sleep phones” head band kept coming off or was waking me, so I wasn’t getting the benefit of overnight sound therapy, which is crucial to making progress. I have recently started wearing the in-ear devices whilst asleep and have found them not to cause any issues (although they advised me not to purely because of being asleep - just in case). I will soon be having a follow up appointment and will see how the audiologist advises me how to progress and the likely time scale of improvement now that I am wearing the devices overnight as well as during the day.

[robjones901 in reply to Jeepster76]

all the best - I tried one of those headbands and that came off in bed. Difficult to control, just like the tinnitus!

[Whine]

Jeepster:- We all hope that the treatment helps, and I join in with all the other responders in asking if you would keep us informed.

[Jeepster76]

Hi Whine,

Thanks for the encouragement. Will do, my next appointment will be in about a month’s time.

[StressedOutA]

Hi Jeepster, how did the follow up appointment go? Any progress?

I’ve been to the clinic and had the tests, but never stumped up the cash.

The hearing test in the booth reduced me to tears my T got so loud. The. When the lady played back my frequency, my tinnitus stopped for a few seconds I was elated!

As I say, I never had enough money spare, so tried one of the online apps. Had it far too loud and put it on too long and made my T a whole lot louder!

Keep us posted... you’ve just about convinced me to go back.

Thank you

[Jeepster76 in reply to StressedOutA]

Hi,

It is really encouraging that your T disappeared for a while! The follow up went well, and although I haven’t seen a massive improvement (if I try to listen to it - which I avoid doing) I am noticing the T less and it is causing me less anxiety than before.

John

[TishL]

Hi. How are things going with the treatment? I have contacted the T clinic but expect it will be a little while before I can see anyone. I have had T for about 9 months now and had a consultation with them when it first developed. I was hoping it would disappear; unfortunately, it didnt.

[Wirtgen]

Did it work, it didn’t for me,wasted money

[HammieHammer]

Please, let us know how you are getting on with your therapy.

[Hidden]

I think people should understand that for £2,500, you can expect it to be hit-and-miss. Sure it's a lot of money, but for health procedures outside of the NHS, it isn't actually a lot of money.

I really do hope it works for Jeepster76, even if it fails for most people it may work for some.

Tinnitus after all has a variety of causes. For what it's worth, l hope to one day do research into it (l'm a sufferer, with a neuroscience degree), so don't lose hope guys! Hopefully l'll get there one day.

[Yogachamp in reply to Hidden]

HiThanks for this post , as a person with a neuroscience degree , can you give any advice on ways to deal with this in particular when it suddenly wakes you up at 5am with the noise of a fire alarm going off in your head , I can’t help but think there must be a reason why it suddenly flares up like this ?

[Hidden]

Hi there, sorry to hear you're having it so bad. I notice my tinnitus sometimes abruptly switches "on". I suspect it may have something to do with the phenomenon of freak waves at sea, caused by summation of waves as that collide with each other.

[Docspete]

Did it work out?