The Tinnitus Clinic — UK

[SteveToHeal]

Hi guys,

Just received this email from the Tinnitus Clinic UK today.

"Dear Reader,

Welcome to the December edition of Tune In which features our new, unique therapy programme, Take Control™ combining three proven therapeutic options for tonal tinnitus.

Our Tinnitus Desensitisation Therapy™ (TDT) treatment continues to give significant benefits to our patients. As Diana Willis from Gloucestershire says about her TDT tinnitus treatment "Now there are occasions where I am not aware of the tinnitus, if I'm talking to somebody I have forgotten about it, it's gone out of my head."

There is a report on a 66 patient study of the efficacy of Acoustic CR® Neuromodulation, recently presented at the British Academy of Audiology Conference.

And we're really proud to have sponsored our Cheltenham Consultant, Mr Matthew Clark's trip to a surgical ear camp in Nepal. It's wonderful that the team managed to do so much good for people living in such a remote part of the world."​

Just wanted to get people's thoughts on the Tinnitus Clinic UK in general. If people have been?

Especially interested in the TDT, although pricey. I mean can you rather get that info for free on the net?

I've asked other people on Tinnitus Talk about ACRN. Their opinion is it did not work for them and def not worth the price tag for a maybe or make it worse.

Anyway, maybe just a thread about the tinnitus clinic in general. Any good feedback? Worth it in any way?

I guess I'm just being hopeful when I read stats like that 66 patient study of the efficacy of Acoustic CR® Neuromodulation...

I heard that the study was a bust because of bad data. So what gives here? Does it work or not?

Thoughts?

 

[kenny]

I went there a year ago, when I was really at rock bottom, wanted to try their acoustic coordinated reset neuromodulation treatment, I think the price quickly brought me to my senses , offered me their TRT treatment instead, but again declined, very nice people there, and very understanding, but like most clinics in that street and area are well out of my price range, greatly overpriced to the extent of being greedy.

 

[SteveToHeal]

Thanks Kenny - I think that about seals the deal for me then. Nothing I am going to pursue as also way out of my price range.

 

[longframbri]

I have recently joined the forum, so apologise if someone has asked about this before.

I have recently heard about The Tinnitus Clinic in the UK (Harley St based outfit) offering a number of treatments based on the outcomes of a detailed 90min initial assessment, including tympanometry; pure tone audiometry (PTA) and uncomfortable loudness level testing (ULL) - the latter for hyperacusis I believe. The subsequent treatments range from Tinnitus Desensitisation Therapy to their Accoustic Coordinated Reset Neuromodulation. The latter has apparently been developed at the Julich Research Centre in Germany and involves a "device" tuned to your tinnitus that retrains your hearing/brain over time to significantly reduce the level of your tinnitus if not pretty much remove it. From what I can ascertain, The Tinnitus Clinic appears to be a genuine organisation with impeccable credentials, but with associated hefty price tags for its assessment and treatments.

I would be interested to know if any of the forum participants out there have had any experience of this organisation and its therapies and would either recommend or caution against using them??

 

[Inge]

I went to the Tinnitus Clinic on March 5th. Got the desensitising treatment which are hearing aids specifically programmed with static sound to mask the tinnitus and treat it. Very professional outfit.

Paid $6000 for the package. My tinnitus has decreased by 60% since then, but I am also experimenting with meds. The hearing aids help me become less aware of the tinnitus, which in turn reduces my anxiety about it. They don't promise a cure, but a significant reduction in the perceived volume and intrusiveness. No magic bullet but for me brought much needed relief.

 

[noisebox]

I went to Manchester in desperation after a big relapse. Chose TDT. I used the sound gens for a total of 16 hours, made tinnitus quieter but so ultra high pitch I got scared. I sent them back, got a full refund. My tinnitus still is not back to baseline, I really hate the high pitch but it's over 7 weeks and still not back to old sound.

 

[carlover]

Hi all,

well my tinnitus and ear pain/pressure is driving me nuts, I've done it, got the T-shirt and emptied my wallet time and time again trying to find a cure.

Anyway had another look at The Tinnitus Clinic UK.

They were the clinic that marketed the Acoustic Coordinated Reset Neuromodulation which I paid for did for a year and got no results.

However they were extremely well meaning people Mark Williams the head audio who I dealt with I have a lot of respect for.

They talk about special Siemens hearing aids which look interesting (I have NHS hearing aids and are not masking the tinnitus as much as they used to.) no masker in them just when they're in, the tinnitus eases off a bit.

This will all be a lot of money again so do I contact them or do I just live a life I don't want, as I said here we go again.

Good luck all, Pete

 

[wishingluck]

Thanks Kenny - I think that about seals the deal for me then. Nothing I am going to pursue as also way out of my price range.

I really don't understand all that greed, but there you go. These companies are there to make a lot of money, they probably set this stuff up for people like Tom Cruise or Madonna.

 

[Michael Leigh]

I went there a year ago, when I was really at rock bottom, wanted to try their acoustic coordinated reset neuromodulation treatment, I think the price quickly brought me to my senses , offered me their TRT treatment instead, but again declined, very nice people there, and very understanding, but like most clinics in that street and area are well out of my price range, greatly overpriced to the extent of being greedy.

Agree with you Kenny. I know two people that went to that clinic and the treatment didn't help in the slightest. When one of them complained they were quickly shown the door and all the niceness had evaporated....

 

[carlover]

Well I would have to come back on that and say I got a £1500 refund... just saying, still £4500 lost though.

 

[Atlantis]

"The Tinnitus Clinic - Placebo for you at £4500, thanks for your monies"

 

[Louise77]

I have, after waiting nearly 3 months for an NHS appointment (more on that later!) seen a specialist at the Tinnitus Clinic. To my disappointment, I did not see and ENT even briefly, it was an audiologist who performed some test and discussed the results with me. I had a hearing test, but only up to 8Khz which was also disappointing to me as I had hoped that it would pinpoint some problems at the higher frequencies. Unfortunately, the hearing test was not even conducted in a sound proof room and I could hear the noise of traffic outside and people talking in the corridor!
I also had a test where the pressure in the ear is checked.
There was also an attempt at pitch matching but the sounds used to do this were not 'pure' tones and more like white noise so it was pretty impossible to get a decent match. I already know from my own testing on various websites that my main tone is about 3200Hz. The audiologist said my hearing is fine with a tiny dip at 1000Hz which does not really agree with my own findings. He said a hearing aid would not work for my tinnitus.

(I've had it for over 3 months now, probably from headphone usage over the years a few times a week while exercising). It cam on suddenly one night and has not left since, in left ear only although my perception sometimes changes to the middle of my head.
I filled out a Tinnitus questionnaire where you put answers to questions about how tinnitus affects you, I scored about 45 out of 100 which he said was average.
Anyway, he explained about ACRN treatment, costs £5ooo and may not work and in fact may make tinnitus worse! I asked about TRT but he glossed over it very quickly and I didn't get any real information about it.
The upshot is that he will call me in 1 month to see what I want to do.

I'm masking at night with a sound generator, some nights are better than others but some are still terrible and nothing seems to help, these are the times when I get most panicky and fear for my future/ rest of my life coping with this.
I'm using the Sleep-phones and occasionally a pillow speaker.

NOW....the NHS letter came through the day of my private Tinnitus Clinic appointment ! Would you believe it! Anyway, to my horror, despite my GP saying it was for an URGENT ENT referral, all this time it was only for a visit to an audiology department at my local hospital!! So I have been waiting 3 months for an non-existent appointment, and all this time I have not seen one doctor (apart from initial GP visit)! And will STILL not have seen and ENT when this extra hearing test is done. I phoned the local audiology unit and explained that my GP had told me I was to see an ENT but they said at no point was my referral EVER for an ENT. She said that if the audiologist feels it necessary then they can refer to an ENT but then I may be waiting more months for an appointment. I actually feel its pointless seeing them because I know from the private audiologist that my hearing is 'fine'.
My own research shows that GPs should refer DIRECT to an ENT of tinnitus is ONE SIDED and accompanied by some dizziness (which mine can be) to rule out and acoustic tumour by MRI scan. So I'm not sure why I was not referred as discussed at my first GP appointment, and I'm so upset that all this time has been wasted. Perhaps if I had seen an ENT sooner something could have been done before the tinnitus made its way into my head.

Sorry for the rant, this is just getting me so down, I know some of you have it so much worse but I am having trouble accepting this may be forever.

Any thoughts? Currently I'm taking a bunch of supplements including NAC, Zinc, Magnesium, CQ10, L-Tryptophan, L-Glutamine, Lipoflavanoids, B12, Vinpocetine, Picamillon, Piracetam, Grapeseed extract, Iron, and a general multi vitamin. Also trying Camomile tea at nights, and avoiding caffeine and salt as much as possible.

Thanks for listening.
L.

 

[attheedgeofscience]

Sorry for the rant, this is just getting me so down, I know some of you have it so much worse but I am having trouble accepting this may be forever.

Back in November I wrote a post to you:

https://www.tinnitustalk.com/threads/new-and-scared-and-desperate.12139/#post-149621

Esketamine is currently the only known drug at the clinical trial stage which may have the ability to treat tinnitus in the acute phase. That is why - back then - I made you aware of that possibility while the "window of opportunity" was still there. Why this type of drug - NMDA receptor antagonists - work in the acute phase is something I have accounted for in this post:

https://www.tinnitustalk.com/thread...-in-2015-for-tinnitus.9017/page-6#post-160503

If you had signed up with the trial (perhaps you did?), you would not only have had a shot at getting your tinnitus treated to some degree, but you would also automatically have been offered all the screening you mention in your post for free (and much sooner!).

www.tinnitus-study.info

attheedgeofscience
02/FEB/2016.

 

[Louise77]

It was my understanding from the criteria set out in the trails, that the noise trauma had to be a sudden one ie a sudden huge noise or one occasion of trauma eg loud concert etc that caused the tinnitus, not repeated exposure to noise over months or years, is this not correct? Apologies for my misunderstanding if this is not right but I thought I would be automatically rejected because the trauma was caused (I think) by years of headphone usage.
L.

 

[dboy]

Hi @Louise77, sorry to hear you are having these problems. The NHS is basically rubbish for these kinds of issues, unfortunately. If it helps, I got an appointment with an ENT & audiologist through pretty quickly (2 days) when I admitted to my GP that I was having suicidal feelings after my tinnitus got a lot worse. To be honest, the ENT is unlikely to help much, although if you are keen to rule out the acoustic tumour that might be worth pressing for.

One thing that may be worth trying is to talk to PALS (Patient Advise and Liaison Service). If you make a complaint that might galvanise them a bit, or PALS may just be able to give you some info about the best way to press for something more to happen.

http://www.nhs.uk/chq/pages/1082.aspx?CategoryID=68

http://nhscomplaintsadvocacy.org/what-is-nhs-complaints-advocacy/find-out-more-about-pals/

Regarding ACRN, I would definitely not pay for it as there is a free version available. It might help that you are confident in identifying your frequency. If it makes your tinnitus worse then this should only be temporary. Just stop and give it time to go down again. Although, it can apparently get a little worse before starting to get better. So maybe give it a few days before making a decision to stop - if you are coping OK, that is. It is best to do a lot of reading before you try it, so that you are following the best protocol (4-6hrs a day, volume so that you can only just hear it, etc.).

https://www.tinnitustalk.com/threads/acoustic-cr®-neuromodulation-do-it-yourself-guide.1469/

 

[attheedgeofscience]

Apologies for my misunderstanding if this is not right but I thought I would be automatically rejected because the trauma was caused (I think) by years of headphone usage.

I would still consider the option i.e. there must have been some kind of triggering event that you could associate with the tinnitus onset (e.g. fullness in the ears). If so (and regardless), I would sign up with the trial and find out if you qualify (i.e. let the doctors determine if you fit the inclusion criteria or not).

I believe the trial accepts patients up to six months (in some regions).

 

[Tim Hogan]

I was wondering if anyone here has been to "The Tinnitus Clinic" in the UK, to my knowledge its the only place in the world that does more than therapy.

Im considering going if my Spike turns permanent as its incredibly intrusive

Their main treatment is

Acoustic CR® Neuromodulation

Has anyone been here? and if have, did you get results?

http://thetinnitusclinic.co.uk/tinnitus-treatment/

 

[Paulmanlike]

Hello and a little about me.

First experienced subjective tinnitus in 2008, put down to noise exposure in a club.

Over the years I have avoided such loud noise exposures as possible, until last month going out although I left a club early and took regular breaks from the noise.

Now I am again where I was in 2008, routinely listening to the tinnitus sound and yes it's still there, prominent in quiet settings. Unable to match the frequency or even the tone by examples on the internet. If I could describe it, it is in one ear only, and sounds like electric trying to get through, and a bit of a hiss.

The doctor looked down my ear and found a lot of wax down there although there was a lot of it in my right non tinnitus ear as well.

I plan to get them suctioned soon, I hope that it will take the edge of the noise and reduce it without any expectation it will go away.

After then I plan on having a hearing test to see if I have any obvious hearing loss, perhaps ask for an advanced one as nothing is noticeable.

Lastly, if I see no improvement I was considering going to see The Tinnitus Clinic and perhaps enquirer about acoustic cr neuromodulation. I am currently depressed may I add and very much s solutions type of person, I feel I need something that can help. I felt as if I habituated in the past and paid little attention to it, but right now I beat myself up knowing that I damaged my ear myself and need to put it right.

Any information advice would be greatly appreciated.

 

[Michael Leigh]

Lastly, if I see no improvement I was considering going to see The Tinnitus Clinic and perhaps enquirer about acoustic cr neuromodulation.

Hi @Paulmanlike

You need to keep away from loud noise as this is will make your tinnitus worse. I don't advise you to go the Tinnitus clinic. In my opinion, you will get the best help and long term aftercare for your tinnitus under the NHS. Private treatment for tinnitus in the UK cannot match it I assure you. I have been under the NHS for 21 years and the treatment has been very good.

Have a talk with your GP and ask for a referral to ENT for tests to be carried out on your auditory system. Hopefully no abnormalities will be found. Ideally, your ENT Dr should then refer to a Hearing Therapist or Audiologist who specialises in tinnitus treatment and management.

Please click on the links below and read my article: Tinnitus, A Personal View and Hyperacusis, As I see it. They cover a variety of treatments for tinnitus and hyperacusis. Depending on which hospital you attend they should be able to offer you some treatment.

Best of luck
Michael
PS: Before you get your ears Microsuctioned or irrigated. Make sure you apply olive oil eardrops to each ear 3x a day for 7 to 10 days before the procedure as not doing so could cause problems. ie making tinnitus worse. I advise you not to listen to audio through headphones even at low volume.

https://www.tinnitustalk.com/threads/tinnitus-a-personal-view.18668/

https://www.tinnitustalk.com/threads/hyperacusis-as-i-see-it.19174/

 

[Paulmanlike]

Thanks Michael,

I have just spoken to the Tinnitus Clinic and told them my first intention is to remove the wax and to see if that helps. They will call me back next week.

I was under the impression that the NHS is behind in tinnitus treatment, giving the old methods and not particularly up to date in any more up to date treatment. I asked the Tinnitus Clinic if they could reduce the volume and their response was that they could in a large number of cases, that is particularly my aim, rather than to learn to deal with it which is what under my impression is that of the NHS. Nevertheless, I will probably be taking your advice Michael due to the high cost of treatment.

 

[Paulmanlike]

Has anybody heard of these hearing aids with tinnitus "maskers" that can help reduce tinnitus?

 

[Michael Leigh]

I was under the impression that the NHS is behind in tinnitus treatment, giving the old methods and not particularly up to date in any more up to date treatment. I asked the Tinnitus Clinic if they could reduce the volume and their response was that they could in a large number of cases, that is particularly my aim, rather than to learn to deal with it which is what under my impression is that of the NHS. Nevertheless, I will probably be taking your advice Michael due to the high cost of treatment.

Hi @Paulmanlike
Naturally the Tinnitus Clinic are going to tell you that they can reduce your tinnitus. They are running a business. A few people have contacted me that have been to the Tinnitus Clinic. I'll just say their experience there left a lot to be desired. One person told me they weren't making any progress and when he complained because of the huge expense he forked out, he was quickly shown the door.

I have no doubt the Tinnitus Clinic will help some people. However, you have had tinnitus a long time. I suspect the increase in your tinnitus was caused by further noise exposure which was similar to me. I strongly advise you forget about the Tinnitus clinic. Try and get a referral to a hospital that practices TRT as that will help you the best in my opinion. CBT is also good. Read my articles as I feel they'll help you and start using a sound machine at night
Remember, not to use headphones even at low volume.
All the best
Michael

 

[Paulmanlike]

Would just like to start a poll for this company only for those who have used it to help others considering paying their extortionate prices.

When did you use the company and for how long?

What treatment plan did you go on?

Did it help? Please explain (speeded up habituation, actual reduction in volume etc)

Would you recommend it to others?

 

[Dizzyhead888]

Hi All,

Anyone tried the the tinnitus clinic in London?
https://thetinnitusclinic.co.uk/

They seem to advertise impressive testimonials.

 

[Tweaker]

There is no clinical evidence that neuromodulation works. I had the opportunity to try it for free as part of a study and gave up after a while. The beeping noises the instrument made were as annoying as the tinnitus. I do not recommend it. When paying so much money most people will try to convince themselves it helped. Without scientific evidence, it's pointless.

 

[david c]

Hi, I wouldn't waste huge amounts of money on the Manchester Tinnitus clinic. The main therapy they promote - Acoustic CR® Neuromodulation - has been pretty much discredited as a solution to tinnitus. They funded a clinical trial a couple of years back in the hope it would provide evidence of effectiveness. When it didn't they hushed the trial up.
That said, treatment on the NHS is pretty patchy and limited. It might be worth spending a bit (a fraction of the amount you would spend on the Manchester clinic) just getting a private hearing test to see if your hearing loss has worsened.

 

[Tweaker]

None of these neuromodulation type treatments have any scientific proof that they reduce tinnitus. Shouldn't be allowed to sell treatments without evidence to back up their claims. Waste of money.

 

[Paulmanlike]

Load of bollocks selling treatments with no proof of efficacy, but when you're desperate you'll believe anything.

If it did actually treat tinnitus, it would be front page news and it's not so there you go.

 

[MartinH]

Hi All,

I'm going to be visiting London for about a week and was poking around on the internet and was wondering if anyone had any experience with the Tinnitus Clinic on Harley Street.

I live on the Island of Guam and my treatment options are quite limited here. I've had all the tests and have a spot of high frequency hearing loss but other than that I'm allegedly normal. My tinnitus is kind of all over the place, from barely noticeable to fucking annoying.

I was just thinking perhaps while I'm in London it might be worth seeing someone that specializes in tinnitus. So far I've got only the standard "live with it" crap. I will have to pay for it out of pocket so cost is a bit of a concern.

Any advice would be appreciated.

 

[GregCA]

I don't want to discourage you, but there is currently no effective treatment or cure anywhere. It's not like there is that one place on earth where we could travel to get relief: the most up-to-date treatments and options are actually mentioned on this forum. Those who get "fancy treatments" you hear buzz about are generally people enrolled in clinical trials.

What do you expect that Tinnitus Clinic will be able to do for you?

You list "Unknown" as cause of tinnitus, so perhaps a more productive investment of "medical time" would be to pursue the diagnosis route to try to figure out a root cause. Have you gone down that path already?