The Tinnitus Clinic ?

[Shellipops]

Hi folks,

Does anyone have any experience of The Tinnitus Clinic?. Reading patient stories seems quite positive. Suppose just looking for some independent reviews if available.

Many thanks

[Knoll80]

Hi Shellipops. I’m a current patient using the night time device, Levo. It’s early days but if that’s what you’re considering and have any questions about it please ask. Sadly I didn’t qualify for daytime ACRN device as my tinnitus is too high pitched. 14500hz of fun fun fun! Basically my tinnitus is the type that makes you want to leap off Beachy Head....But in my case hand tens of thousands of pounds over to people in my desperation for a cure that doesn’t exist before I do so.

[JohnJopp]

Save your money Shellipops. There is no scientific evidence that ACRN works. There was quite an extensive trial a couple of years ago that failed to support their claims. I think the BTA have the report published somewhere on their website but I can't find it I'm afraid. Maybe Nic can point you to it. Don't be disheartened though. You really don't need to spend a fortune on these sorts of therapies in order to habituate. In most cases with the right positive attitude it will just happen naturally in time.

John

[Knoll80 in reply to JohnJopp]

I would be inclined to agree...... However it seriously depends where you’re at with this and only you can answer that.

Im sorry I still don’t believe that any amount of positive thinking will ‘habituate’ severe tinnitus. It’s a lie which time and time again is proven when people with mild tinnitus who’ve reached this mythical state of not caring suddenly get an upgrade to first class, severe screaming 24/7 nightmare T. It’s still liveable but its a miserable compromised existence, not a life. Ask Hazyboy and any number of other people on this forum alone right now who are in this unfortunate boat.

From my point of view if you have unliveable T and you’re seriously thinking of ending your life day and night, you might as well give everything available a go before you end the madness....... I don’t think money’s much use on the other side.

[Shellipops in reply to Knoll80]

Thanks for the replies folks, I appreciate it.

Im 4 months in and it seems to be getting harder to shrug off the hopelessness I feel on an hourly basis now. I dont think my noise is severe but it bothers me all the time. Even when I dont hear it, I remember I have it and lurch back down the well of despair. I find the low mood worse sometimes and just dont know where to turn. Ive researched everything and dont know where to start. Only time Im not consumed by anxiety is when I go to bed...Ive been drinking wine - 2 glasses at most to help me and I have a sound machine which plays crickets which seems to tone the noise down enough to calm me. For this reason I was thinking Tinnitus Clinic for some sort of masking programme. Ive had an NHS hearing test....it didnt appear very comprehensive and I was told my hearing is normal. Ive been referred to an Audiologist for counselling though shes not trained as such. I get the fact my logical brain has accepted it but for me now my emotional brain is taking over...Ive always been a slightly ocd type. Thought about anti anxiety meds etc but am absolutely terrified they may affect my tinnitus. I dearly hope time does help and it lifts me somewhat when I read folks on here who have moved on. I feel now I need some guidance on how to deal with this. Knoll I appreciate you are early on in your treatment, do you get counselling with the Levo?. Is it making any difference at all?. I dont have infinate finances so was just looking to narrow down how and where was the best place to invest it so to speak.

[Knoll80 in reply to Shellipops]

Too early to say Shelli. To be honest I struggle to do all night wearing it. It’s tough, your ears hurt from the earbuds, you pull them out when you’re asleep and your basically hearing your tinnitus amplified rather than masked.

I went for it because not to be dramatic money means little too me now. If this doesn’t improve I’m out. I’m too old for massive optimism of a cure and too young for a life of barely coping for the next 40 years. Today my best friend had a baby. I’m happy for him but also heartbroken at my situation compared to his. I really can’t live in a world where everyone else is enjoying life in a way I used to and I’m hearing this awful crap and dying inside knowing it’s with me forever. I was never a bitter twisted person and I don’t want to be one. I would rather be remembered as I was .

As you can see I too have a large emotional response which the clinic say needs to be addressed for Levo to work. The issue with this is how when you loved your life pre T and desperately miss it, do you not have an emotional response to something that’s taken so much of it away and destroyed your confidence? It’s like not having an emotional response to someone beating you up and leaving you disfigured. Very hard. Anyway they do provide some counselling but I’ve also had some CBT which did nothing.

[Shellipops in reply to Knoll80]

Im sorry to hear its not working so good for you, its probably no coincidence nearly all tinnitus help on offer takes "time" to work. I dont have the benefit of time yet as Im still fairly new to this and I am by nature an impatient person. I suppose having to retrain our very being, be it consciously or not, to a different way of thinking, emotional acceptance even forgiveness...would take time. At least you are trying things and who knows by the time you have tried them all...time may have taken over and you will have turned a corner. I hope that we are both here a year from now telling folk that the queue was worth the wait.

[Knoll80 in reply to Shellipops]

Amen to that. I’m giving stuff a go but I have to say it helps my anxiety when I’m listening to the screeching and knowing I can’t stop it, to know there is a way out, albeit a drastic one.......Very odd that I know, but I think it’s similar to soldiers knowing they have a bullet for themselves in case they’re captured.

[mickeypolo1 in reply to Knoll80]

Hi. I was sent an article from the Guardian about a recent study at Bath University which suggested CBT combined with mindfulness can prove an effective treatment. I just wondered what your experience of CBT was like?

[Knoll80 in reply to mickeypolo1]

I did it with the ‘top’ audiologist in Surrey privately. It was very expensive like everything else I’ve done. To be honest it did nothing for me. Horrible as it is there’s a multitude of industries preying on our immense suffering and msssively reaping the rewards. That’s what the BTA are up against.

I think CBT works great with past trauma or phobias. But as I tell people tinnitus is a very present constant trauma. I concede that with mild/moderate/intermittent T CBT might be useful, but if you have loud constant high frequency screaming in your ears all day and night long, thinking of all the good things in your life only depresses the hell out of you more. Because those are all the things you can no longer enjoy. They have been robbed from you. You only have to look at people on these boards. Telling a guy who is suicidal because of loud T to look at the good things in his life and be grateful he’s got a lovely wife, a nice house and beautiful kids is only reminding him of all that T has ruined his enjoyment of. In this respect I found CBT frustrating and patronising for out condition.

[NicBTA Partner in reply to JohnJopp]

Hi John

We did have a statement about Acoustic Neuromodulation at the time the trial ended, but then we rebuilt the website...

We're still keen for there to be more trials on this device, but so far there's not been another independent study.

The Tinnitus Clinic do offer a variety of tinnitus management options, and they have been corporate members of the BTA for a number of years. Their head audiologist does know his stuff but you are paying for their expertise.

Best wishes

Nic

[Shellipops in reply to NicBTA]

Thanks Nic

[Jeepster76]

Hi Shellipops,

Just been looking at posts about the Tinnitus Clinic, to see how effective it has been for people. I had my consultation at their Harley Street clinic last Friday and it was very thorough; I saw both the ENT consultant (Mr. Patel) and the audiologist (Mr. Williams).

I am fortunate enough that my Bupa cover through my job covered the £300 it cost, unfortunately that's all Bupa will cover though. 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 and as I understand it, it basically involves a combination of wearing in-ear devices that play tinnitus-mimicking frequency sound at a low volume for 24 weeks, 6 hours a day and 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 I will keep you posted as to how effective it turns out to be for me.

All the best, John.

[Karltraae in reply to Jeepster76]

Hi John, I have an appointment at the tinnitus clinic next week, any update on your progress?

[Jeepster76 in reply to Karltraae]

Hi, sorry I am not very good at reading my emails, so a lot get missed. How did your appointment go, have you found any benefit from the treatment - if you went ahead?