The UK urgently needs a biobank library of human tissue samples so experts can study and find better treatments, or a cure, for “ringing in the ears”, says the British Tinnitus Association (BTA).
More than seven million adults in the UK are thought to have tinnitus.
This stressful and upsetting condition of hearing whooshing, buzzing or other intensely annoying sounds with no external source is poorly understood.
For some, it becomes difficult or impossible to lead a normal life.
A survey by the charity, carried out in November with 2,600 people with tinnitus, suggests almost one in 10 living with the condition has experienced thoughts about suicide or self-harm in the past two years.
One in three thought about their condition every hour – causing them anxiety and sadness.
Kirsty Stewart, from Hampshire, was 28 when she developed tinnitus.
“At first, it sounded like a lawn-mower. I thought maybe a neighbour was doing their lawn, but they weren’t. It was really bizarre.”
Kirsty tried to ignore it, but the sound was persistent and then it changed to something even more distressing for her.
“It became a loud piercing ringing noise. It was so bad and loud that I couldn’t escape it. It was constant. It was like torture.”
She says it took a massive toll on her wellbeing.
“It sent my whole life crashing in. I stopped eating, seeing friends and family, and I didn’t feel able to work because I couldn’t concentrate.
“It got so bad that I spoke to my mum about not wanting to be here any more. I was so desperate.”
The BTA says other people with tinnitus share similar experiences of feeling isolated, debilitated and stressed.
It has published the survey findings in a new report.
As one of the respondents confided: “You don’t like telling people, because you think that they will think you are crazy. And you don’t want to bring people down with you when you are down and stressed with the noise 24/7.”
Another said: “It has made me feel that large parts of my life were stolen from me.
“From my ability to go to concerts or to enjoy music ever again, to having to give up my daily and nightly meditation practice to being fearful of any and all loud noises.”
Kirsty saw a doctor who referred her to a specialist experienced with managing tinnitus. She says she has found ways to cope with the noises she still hears in both ears. Kirsty says counselling and reflexology have helped her adjust.
Malcolm Hilton, an ear, nose and throat expert at University of Exeter’s Medical School, says a national biobank for tinnitus would be massively beneficial, and might reveal better ways for managing the condition.
“There are many treatments available for tinnitus and it is disappointing that people still come away with the message that they have to ‘learn to live with it’ without support. The main issue is that there is usually no ‘quick fix’ and different treatment approaches are needed for different people,” he said.
Head of the BTA, David Stockdale, said: “We know that developing cures for any condition takes time and so we need to make headway in tinnitus research.”
The charity has information, tips and support for people affected by tinnitus.
Things you can try to help cope include:
Tel: +44 (0) 141 946 6482
Address: Healthcare Skills Training International Ltd
West of Scotland Science Park
Block 7, Kelvin Campus
Glasgow G20 0SP