As she struggles to cope with tinnitus, the 43-year-old is struck by the lack of awareness, support and treatment for sufferers and believes there is a shortage of funding for research.
Kate has lived with tinnitus for most of her life, but she is still learning to deal with the fact that there is no cure, and no effective treatment for this debilitating symptom. Kate accepts tinnitus may remain with her for the rest of her life, unless a cure or new treatments are found. Her mother began losing her hearing and suffering from tinnitus in her mid-30s, and is almost completely deaf now at the age of 76.
But she is afraid that her two young children might have to go through the same torment when they get older. "It started as an intermittent squeaking in my ear when I was a teenager, and became more persistent as I grew older. I was in my 20s when I realised it was tinnitus. About five years ago it became a constant squeaking in both my ears. Sometimes it’s a lower whistle which comes in bursts. I worry that one of these bursts of noise will eventually become a continuous sound, so when I experience this sort of noise it can make me very upset. I became quite stressed about my hearing at this point, which was the same age my mum started to lose her hearing. So I went to my GP, who sent me to a hearing therapist," recalls Kate
"When my hearing was tested, at the same time that I saw the therapist, I was told I had very good hearing, with only small losses at very high frequencies. I haven’t had it tested since. In the last couple of years I’ve found that I can’t hear the kitchen timer beeping if I am out of the room.
Over six sessions of learning about tinnitus and how to cope with it, Kate realised that she would never be able to escape the sounds in her ears.
"I suppose it may have been some sort of ‘habituation’ therapy I was receiving, although it wasn’t given a name. It wasn’t cognitive behaviour therapy (CBT) or Tinnitus Retraining Therapy (TRT), both specific therapies which help people focus less on their symptoms. The therapist told me what tinnitus was, gave me an overview of how the ear works and then we simply talked about how my life was very busy and how I needed to relax more. I was given breathing exercises and fact sheets to read, but not a great deal else. I was told I could go to more sessions if I wanted to, but they didn’t seem to be going anywhere. We didn’t discuss long term goals or ideas for future sessions, so I stopped.
"It was pretty depressing. I was faced with a brick wall. What do I do now? I’ve got this until I die," she says. Since there is no cure for tinnitus, Kate doesn’t have any treatment for it. "My mum once said that if you do try and treat it, it gets worse because you never stop thinking about it.
"The only thing that works for me is white noise, so it doesn’t bother me when I’m working and there’s background noise. I also keep a speaker under my pillow to play music when I’m very tired, stressed or I have a cold, all of which makes the tinnitus worse," she adds.
Although Kate has learnt to live with her symptom on a day-to-day basis, she doesn’t go to pubs, clubs, bars, concerts or any other venues with loud sounds. She avoids exposing her children to them as well, although a trip to the cinema is an occasional exception. But afterwards, her ears ring and the tinnitus is more noticeable for the next few days.
Kate thinks the lack of funding for research into this debilitating symptom is a cause for concern. "Tinnitus is an invisible condition; it goes unnoticed by everyone except the sufferer. It’s not that it has disappeared from view – it was never visible in the first place. Nobody seems to know how to treat it because nobody has pinpointed a cause, and doctors seem to be unconvinced that any available treatments might help me. So tinnitus is not a pressing concern for the medical profession. Much more research is required to find ways to treat tinnitus and maybe even cure it," says Kate.
Deafness Research UK is the country's only charity dedicated to finding new cures, treatments and technologies for the deaf, hard of hearing and other hearing impaired people including tinnitus sufferers.
Vivienne Michael, Chief Executive of Deafness Research UK, said: "Almost five million people in the UK are affected by tinnitus and it can have a devastating effect on their quality of life. Not enough is known about this very complex condition and we are determined to do something about it. We are committed to funding leading edge research and providing practical information to health professionals for the benefit of sufferers," she added.
For more information on tinnitus and research into deafness and other hearing conditions, log on to the website at www.deafnessresearch.org.uk where you can access a wide range of information. People can call the Deafness Research UK freephone helpline on 0808 808 2222, or e-mail info@deafnessresearch.org.uk
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Ref: DRUK0044 - Kate Cook
