British Tinnitus Association

TRT failure?

Hi, had T for 6 months now, slight hearing loss in that ear, had all the usual through the NHS and finally got retraining therapy today at the hospital 2 months after an MRI that showed no issues.

My question is though has anyone else had TRT through the NHS and what did you receive? All I had was a 10 min appointment where she told me everything I already know about T and then gave me 2 leaflets and a piece of paper telling me how to relx and breathe!

I'm not sure what I was expecting but it was perhaps a little more than some leaflets that they could have given me 2 months ago after the MRI results?!

What were your experiences people?

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Hi, I’ve seen my hearing therapist in the past and usually spend an hour with her. She’ll then phone me between visits. She’s very good and goes through everything even if I’ve heard it all before, it’s very reassuring.

I only see mine when my t is bad as most of the time I can go years without it bothering me.

I’m seeing her today to discuss things and possibly get new hearing aids as mine are 12 years old! Think there’s newer ones which will help me more.

Take care xx

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hi buddie123, your extremely lucky getting that kind of service and care, I have to wait 6 months or more to see audiologist, and phoning is impossible to speak to someone, I must say that in scpotland theres little help fo us all here. I used to go to Edinburgh E.N.T but theyre attitude was so bad,an hour late for app. ignorant dismissive no compassion if fact at 1 app. the audiologist left me sitting on my own for 30 mins of a 35 min app.!!!!!!!!!!!! and I was told that the app. was a cancellation and that I shouldn't have received it when I phoned up as my ears were so bad!!! so your really lucky getting that level of service take care drumcraw

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Hi there, l requested TRT and was told that it was considered old fashioned. I think I will buy a book and teach myself to see if that helps me. I have had tinnitus and hyperacusis for 4years with no relief. My life is not as it was. I have not travelled on a plane or train since the onset. No cinema or theatre and socially very little.

I have never been offered an MRI scan either...

Ah well onwards and upwards....

I wish you all a peaceful day.

S

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Hi, I'm in same position, was with doctor this morning and she said she'l refer me to e.n.t and then if it doesn't show up any thing. I'l get t.r.t. I would be expecting more aswel

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hi micheal. never been offered T.R.T in the clinic I attend they've never mentioned it once and I asked my doctor to see a hearing therapist and she said I don't know any if you find one let me know???????????????????? Scotland is bad for help withT.I know theres only 2 audiologists trained in tinnitus for the whole of Glasgow where I attend, although in Edinburgh as Edinburgh E.N.T. are horrendous and its not just myself that's had bad exp. ive heard stories from lots of people in my tinnitus help group meetings!!!! I had to ask my doctor for an M.R.I. scan when I first got T. as no one offered it good luck and take care. drumcraw

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Hi drumcraw

As I said in my posts below, tinnitus is an expensive treatment and not many hospitals practice it in the UK. Compared to some other countries tinnitus treatment under the NHS is a lot better. Unfortunately the level of treatment can be quite variable throughout the UK.

All the best

Michael

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Hi Drumcraw,

I live in the Central Belt and in my limited experience, it seems to be the case that tinnitus sufferers are not particularly well catered for here either. When I was first diagnosed with hearing loss by the ENT consultant, I had to ask him about the tinnitus I had, which was the main reason for being referred in the first place! In response, I got the standard shrug of the shoulders " no cure for that " reply and it was only when I saw the audiologist, I was given a little bit more information in the form of a couple of leaflets. The focus seemed to be more on my hearing loss and the provision of hearing aids, for which I was very grateful, but the tinnitus side of things which was causing me greater anxiety was glossed over. There are no tinnitus support groups in my local area and as recently as this morning, my GP asked me to let her know if I managed to find any! Tinnitus as we all know can have distrastrous effects on people's lives and I find it really extraordinary, that there is such a lack of help and support available for those affected by it. I know it's a difficult condition to treat and I am sure the NHS does the best it can with limited resources but tinnitus just seems to be almost ignored, because the popular belief is it's incurable, so why waste time on it. Maybe if someone in a very senior position in the NHS could experience first hand what we go through for themselves, it would be a different story! Rant over!

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Hi WTBMrBlonde

What you had with your Hearing Therapist was not TRT (Tinnitus Retraining Therapy) I have had TRT twice under the NHS with very good results. However, it is an expensive treatment and not readily available at all NHS hospital. Proper TRT treatment takes up to two years to complete. It involves counselling and sound therapy, using white noise generators and a sound machine at night. Please read the posts below about TRT that I wrote at another forum and you might find helpful.

All the best

Michael

What is TRT and when should it be started?

I have had TRT twice and I also have the Tinnitus Retraining Therapy book, written by Professor Pawel Jastreboff and Jonathon Hazell. It is available at Amazon should anyone wish to purchase it.

It is the reference book that Hearing Therapists and Audiologists follow when practicing TRT with their tinnitus patients. There are two parts to the treatment. Counselling and sound therapy. Sound therapy is supplied by wearing two white noise generators and then using a “sound machine “ at night by the bedside for sound enrichment.

If hyperacusis is present the sound therapy will also treat it. Throughout the TRT book there is no mention that this treatment cures tinnitus. TRT or Tinnitus Retraining Therapy, is what it implies: Through regular counselling sessions there is a gradual retraining of the way a person thinks about tinnitus and to treat it as non life threatening.

At first the therapist discusses with the patient how the tinnitus makes them feel and how it has impacted on their life. Often people say they have lost interest in the things they once liked doing, which is perfectly understandable. The main goal here is to gradually help them look at life differently and with a more positive outlook. Over time the negative thinking that is often associated with tinnitus and hyperacusis is gradually dispelled and demystified.

The Hearing Therapist does this in a controlled and precise manner so that the patient feels relaxed and not pressured. In many instances the tinnitus is gradually pushed further into the background making it less prominent. Therefore, it must be stressed and understood, this treatment takes time. To complete a course of TRT takes approximately twelve to twenty four months and in some cases longer. The duration of each counselling session is left to the discretion of the Hearing Therapist. Typically, these can last up to one hour or more.

The amount of appointments required will be different for each patient, but it is quality rather than the quantity of the counselling that really matters.

There are a few misconceptions about this treatment and the way it is administered that some people misunderstand which I want to address. If a patient is given one white noise generator to wear this is not TRT. When two wngs are issued and no tinnitus counselling is offered on a regular basis, it is not TRT. I am not saying that a patient will not gain any benefit from the above treatments; I only want to state they do not follow the proper Tinnitus retraining therapy protocol.

When should TRT be implemented or started?

The following is based on my own opinion and therefore is not professional medical advice.

The onset of tinnitus can be quite an emotional roller coaster for a lot of people, and I believe a person needs time for this to settle. Many people habituate within the first 6 months to one year of the onset of tinnitus without any treatment. If a person just has tinnitus without any additional symptoms, such as dizziness, deafness or balance problelems.

I think a period of six months should elapse before starting a long-term treatment such as TRT.

TRT, As I See It.

I think some people misunderstand TRT and the way it can help tinnitus. Whilst a person is entitled to an opinion, if they haven’t been on the programme and only read reports on it, I don’t believe they are getting the full picture. A number of people have asked me about its effectiveness and when should it be administered. I covered this in my post: What is TRT and when should it be started:

TRT has quite a following and has caused much debate in this forum and elsewhere on the Internet. Unfortunately, a lot of these comments haven’t been favourable, although those that have had the treatment or elements of it have said they found it helpful. This treatment is expensive and I will be candid and say, only those that can afford it are able to try it.

Where I live the treatment is free but it is only available at selected hospitals. Even then, some don’t follow the TRT protocol and adapt the treatment to their requirements but good results have still been possible. In some parts of the UK it’s just not available nor is CBT.

Therefore, anyone wanting TRT will have to pay privately at clinic. Other forum members have told me the treatment is free in their country and like the UK, it has been adapted to include some elements of the therapy. This may be wearing one or two white noise generators and not always having tinnitus counselling with a Hearing Therapist, so a person may be left to just get along with it.

I have learned in some countries medical insurance won’t touch TRT, so a person will have to pay for it out of their own pocket, which I think this is unfortunate.

So what is TRT and if one is able to pay for it should they, taking into account some of the negative comments that it has received? Having had TRT twice over 20 years following the TRT protocol, I will try to shed some more light on this treatment and hopefully give the individual a little more clarity to make up their own mind on whether the financial outlay is worth it, but more importantly; is it effective as a treatment for someone that has tinnitus and hyperacusis and enable them to have a better quality of life?

I first want to say the following is based on my own opinion and therefore is not professional medical advice. The onset of tinnitus can be quite an emotional roller coaster for a lot of people, and I believe a person needs time for this to settle.

Many people habituate within the first six months to one year of the onset of tinnitus without any treatment. If a person just has tinnitus without any additional symptoms, such as dizziness, deafness or balance problems. I think a period of at least six months should elapse before starting a long-term treatment such as TRT. Anyone paying privately needs to know they are getting the proper treatment. Any clinic not giving you this service then I advise you to go elsewhere because it is not TRT. You should be given two white noise generators to wear and also having regular counselling sessions with a Hearing Therapist or Audiologist. More is explained in the above link.

TRT is not a complete cure so anyone seeking this might be disappointed.

However, the sound therapy, which involves wearing white noise generators, I believe can cure hyperacusis as in my case. It should be noted, whilst this treatment may not cure tinnitus, many people find its perception reduces to such a low level they can comfortably live with it. Habituate. In some instances a person might be unaware of their tinnitus for long periods. Each person will respond to it differently.

If you have ever lost someone that is close to you, such as a parent, partner or even a pet then you will know what it is to grieve. Most people will go through this process at some point in their life. It is not often talked about but we all know it’s something that’s inevitable and will come to us sooner or later perhaps even more than once in our lifetime. It requires a period of time for a person to accept that their life has changed, and time is needed to adjust so they will eventually be able to move on.

Why am I saying this some of you might be wondering? A forum member recently asked what does TRT involve? I was explaining to him, the counselling part of the therapy and the relationship between patient and Hearing Therapist. At first the therapist discusses with the patient how the tinnitus makes them feel and how it has impacted on their life. Often people say they have lost interest in the things they once liked doing, which is perfectly understandable. The main goal is to gradually help them to look at life differently and with a more positive outlook. Over time the negative thinking that is often associated with tinnitus and hyperacusis is gradually dispelled and demystified. The Hearing Therapist does this in a controlled and precise manner so that the patient feels relaxed and not pressured.

The forum member then said it sounds like a form of grief counselling. After we had spoken I thought about it and have to say I believe it to be a good description, because that’s what the therapy part of TRT is.

The amount of times people have told me over the phone or read posts in this forum: “If I could only get my life back”. “My life used to be perfect”. “I keep looking at peoples ears and wondering what my life used to be like”. “If I could only hear silence again”. And so on.

When someone gets loud intrusive tinnitus with or without hyperacusis, in an instant their world has been turned upside down. Some go through periods of stress, anxiety even depression and yearn for the way life was before the onset. They need time to adjust and to accept this new anomaly in their life. Some have an easier time than others at habituating, so may not need the help of a tinnitus counselling.

For some that find the tinnitus and hyperacusis severely intrusive TRT and CBT can prove to be helpful. It all depends on the individual, their emotional makeup and the severity of the condition because we are all different. It is for this reason; the treatment can take up to 2 years for a person to adjust to a different way of life and often with a positive outcome.

I was fortunate to have TRT twice and found it to be helpful on both occasions. I only wish that it were more readily available to others.

Michael

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