What does tinnitus sound like and could I have it?
PUBLISHED: 17:19 14 November 2018
Tinnitus affects one in five people in the UK. Charlotte Smith-Jarvis talks to one Norfolk woman who says more needs to be done to support sufferers.
Rather paradoxically, for a silent condition, tinnitus is immeasurably loud. You wouldn’t notice someone had it unless they told you. You won’t see sufferers cowering away with their hands covering their ears (not in public anyway). There are no outwardly visible symptoms, other than perhaps a flicker of weariness and undercurrent of distress in the eyes, following days, months, weeks or even years of unrelenting noise.
And yet some patients say they’re being practically disregarded as a nuisance by the health service. Fobbed off with armfuls of leaflets, and left to keep calm and carry on.
We will likely all experience tinnitus at some point in our lives – how many of us have stood too close to the speakers at a bar or blared up the music on our headphones only to be left with a distorted and quite frankly annoying ringing noise we can’t shake?
What if that noise didn’t stop? What if every time you put your head to your pillow at bed time instead of the quiet contentment of sleep you’re met with a cacophony of sound so loud and disruptive it makes you want to scream?
Jane Carmen from Norwich says the condition has made her life a walking nightmare and she’s keen to raise the profile of tinnitus because in her words “you hardly get any help”.
“I would say don’t take no for an answer,” Jane adds. “You have to keep on trying to help yourself. This has impacted on my life so much it’s almost made me suicidal. It’s an awful condition if you suffer severely. Really awful.”
Jane, who’d been in reasonably good health, says her rocky relationship with tinnitus developed this March during a period of stress – not only had the family suffered bereavement, but she’d just moved house and out of the blue developed a “loud roar” in her head so distressing it’s caused her to take sick leave from her job at the city’s branch of John Lewis, and has resulted in daily feelings of anxiety and depression.
Jane’s sudden “coming on” of tinnitus strongly echoes the experience of TV’s Susannah Reid, who revealed earlier this year she’s been living with the condition for a decade, believing it was brought about by the traumatic birth of her son.
“As with most people,” says Jane, “my first port of call was a visit to my GP who, after examining me, referred me to the ENT/audiologist department of the hospital. I was given the usual tests and saw an audiologist who said they would refer me on to an ENT. After about six weeks I saw the ENT who sent me for an MRI. Everything came back normal, I was told there is no cure and I just left with a bunch of leaflets!”
Jane was referred for hearing therapy, told it was stress and “left to get on with it with a tinnitus masker”.
“I later paid to see an ENT as I had loads of questions but found it hard to get any response – unfortunately it’s a common thing I’ve found with fellow sufferers. On the last visit I was given the name of a psychologist specialising in tinnitus and as it was handed to me, told he practises in Harley Street!”
Luckily for her finances, Jane found the doctor consulted with the NHS and after many calls managed to contact the specialist who said she needed a referral from her GP, which was thankfully accepted by the local commission.
“But it took me five weeks to do this, and I had to go all around the houses to help myself when I could have been referred by a GP in the first place.
“Specialists don’t seem so bothered about tinnitus and I think ENTs are perhaps the worst people to go to about it because I think they seem more interested in surgery and things like that. Many many other sufferers I’ve been in contact with say we may as well not bother.”
To date, Jane says her tinnitus remains severe and has drastically affected her daily life. “I hope to return to work once I hopefully get some decent support. The sad thing is, after meeting a lot of other people, their stories are very similar and the anxiety alongside it makes the condition worse!”
Tinnitus at a glance
With Karen Finch, managing director of The Hearing Care Centre and a qualified tinnitus counsellor.
Q: What exactly is tinnitus?
A: It’s a condition where noises are heard in the ears or head. Around four million people suffer with it.
Q: How do I know I have tinnitus? What does it sound like?
A: It’s a mixture of whistling, ringing, buzzing and rushing.
Q: What are the noises?
A: It’s not fully understood but it’s considered to be the noises of the internal workings of the ear and nearby arteries and veins. For people without hearing loss all that can be said is that somewhere along the line from the cochlea to the auditory cortex, irregular electrical signals are being generated, producing sounds.
Q: What causes tinnitus?
A: It’s a symptom, not a disease and there can be many causes – exposure to loud noise, hearing loss, ear or head injuries, some diseases of the ear and some ear infections – or it can be a side effect of some medication. It may be a combination of all or some of these or a person may never have had any of these conditions.
Q: How do I cope?
A: If you suspect tinnitus see your GP immediately. They will usually refer you to an ENT unit to rule out series middle ear problems and conduct a test to determine whether the problem is linked to hearing loss. Although there’s no simple cure there are strategies for reducing the impact. Tinnitus can be a real problem at quiet times of the day, such as before sleep. A device providing external competing sound at a constant low level (a sound generator or masker) can help distract. Hearing aids can also be modified to incorporate a sound generator.
For many who experience difficulties with their hearing and tinnitus, hearing aids can make such a difference to their lives. For people without hearing loss there are behind-the-ear sound generators (similar in appearing to hearing aids) which also produce a low-level white noise. Both are widely used and available through the NHS and privately. Some people also find the introduction of a pleasant background noise such as the radio, provides a distraction.
The British Tinnitus Association is now sending out information packs to GPs to hand out to those affected. Go to www.tinnitus.org.uk for your local branch or the Norfolk Deaf group has support for tinnitus suffers – www.norfolkdeaf.org.uk