Living with tinnitus: What it's really like and how to manage it

One in seven adults experience the unnerving reality of tinnitus: hearing phantom sounds with no escape button.

Despite affecting more than seven million people in the UK alone, many sufferers are told they simply have to "live with it".

But tinnitus, while often misunderstood and shrouded in myths, is not a life sentence.

We debunk some common misconceptions and share management strategies from both experts and a sufferer.

What is tinnitus? 

Tinnitus is a condition characterised by persistent sounds in the ears, which are not caused by external noise.

It can affect people of all ages and backgrounds, and while the exact cause is still unknown, it is often associated with hearing loss, exposure to loud noises, and certain medical conditions.

“Doctors never identify an underlying cause in most cases, but it can be anything from a side effect of medication to infection, vitamin B12 deficiency, wax or a tumour (rare), so it pays to be wary of new noises,” advises Dr Mark Porter.

So while it is common, there are plenty of myths that surround it - so let’s separate fact from fiction.

Myth: Tinnitus is a constant ringing in the ears

While tinnitus is often referred to as a ringing in the ears, tinnitus is very much an individual condition, with each person experiencing different sounds and reacting differently.

Some people with tinnitus even describe musical tunes, singing (musical/auditory hallucinations) or pulse beats (pulsatile tinnitus) as symptoms of the condition.

For practical life coach Kate Tilston, her tinnitus began with her ears feeling blocked.

“It was as if I had a really bad cold, my ears were blocked and my hearing was affected,” she says.

“Then I started getting a low droning sound in one of my ears. I kept thinking that there was some machinery outside our house that was making the noise and had to keep checking! Some days it’s much quieter than others, but it’s a constant noise.”

Myth: Tinnitus only affects older people 

Tinnitus does not discriminate by age.

While it is true that the prevalence of tinnitus tends to increase with age, it can affect people of all age groups, including children.

About one in 10 people in the UK have experienced mild tinnitus, and, according to Tinnitus UK, up to 1% of adults have it severely enough to affect their lives.

For most people it’s a temporary condition that can quickly disappear, however, identifying and addressing tinnitus early can prevent it from becoming a persistent and potentially more distressing condition.

Myth: Tinnitus is a symptom of hearing loss 

While tinnitus is commonly associated with hearing loss, it can also be a standalone condition.

In addition to prolonged exposure to loud noise, tinnitus is also linked to ear or head injuries, ear infections and diseases, as well as emotional stress and trauma.

"In the majority of cases tinnitus is not a sign of an underlying medical condition," says Karen Brunger, from RNID, the charity for deaf and hard of hearing people.

"At this time we cannot pinpoint the exact location of where these noises are produced. Recent studies suggest it is likely to be occurring on the nerve connecting the ear to the brain, rather than being caused by the ear itself, as previously thought."

It is important to remember tinnitus doesn't necessarily indicate there is something medically wrong with your ears.

Perfectly healthy ears can have tinnitus and it is likely we will all, at some point in our lives, experience varying levels of the condition.

Myth: There’s no treatment for tinnitus 

“There is no pill or magic wand that will cure tinnitus but there are a number of strategies which can help minimise its effects,” says Mr Andrew McCombe, a consultant ENT surgeon.

McCombe says that there are a number of strategies that can help to minimise the effects of tinnitus, but patients aren't always told about them.

“One of the most effective management techniques is sound enrichment, where the tinnitus is masked by a low-level neutral soothing background noise, such as rain on a rooftop or waves on a beach.”

“These noises help distract the patient and make the tinnitus less noticeable,” he says.

Tilston says everyone will find something that works for them. For her it’s using technology and low level background noise.

“Downloading apps such as Calm has helped,” she says.

“Sometimes a sleep story gives me enough low background noise to enable me to shut the tinnitus out and get to sleep.”

“Various different types of noise, as in white noise or brown noise, can also help. For me it’s brown noise that distracts my brain. Low-level radio when I’m working or low-level TV as background can distract the brain, which helps me not focus on the ringing in my ears.”

Myth: It’s a mild condition 

While for some tinnitus sufferers, the condition can be either temporary or mild, for others it’s just something they can’t live with.

One study showed that patients with tinnitus have a significantly higher risk of a suicide attempt within one year of diagnosis.

Unfortunately feeling stressed about it can make your tinnitus more noticeable.

Take the time to think about what is making you stressed, and how you can reduce the effect it’s having on you.

“Attending a support group run by organisations like Tinnitus UK or RNID, can also help,” says Mr McCombe.

Living with the condition has meant Tilston has had to take days off work or cancel social situations.

“I try not to let it get to me, but on the days when it’s particularly loud, I can end up going to bed early just to get away from the noise,” she says.

“It’s difficult in social situations because too much noise can make it even harder to hear. I’ve found myself feeling quite defeated by it and some days mentally, that’s very hard to cope with.”

Some doctors struggle to help

Tilston says it hasn’t helped that medical advice has been thin on the ground.

“They weren’t particularly sympathetic,” she says.

”They kept telling me to ‘inhale steam, try a steroid nasal spray’ and they certainly didn’t talk about the mental health effects of tinnitus.”

"Negative feelings and resentment are a natural process when dealing with tinnitus,” says Brunger.

“But it's important not to dwell on these, as this will contribute to stress and anxiety levels, which in turn will leave you run down, irritable and emotional.”

Myth: Your diet can affect your tinnitus 

Some studies have shown a link between taking certain supplements and a reduced risk of tinnitus but the sample size has always been quite small.

Cutting out certain foods may actually do more harm than good.

Eating a balanced diet though is good for your general health and may reduce the effects of tinnitus.

However, if you have trouble sleeping with your tinnitus, cutting out caffeine and other such stimulants - such as alcohol - can help.

There is also a decent body of research that shows a link between smoking and tinnitus.

There’s various reasons why smoking might make your tinnitus worse - from raising your blood pressure or irritating the eustachian tube within your ear - so quitting is a good option if you’re really struggling with the symptoms.

Myth: Hearing aids can’t help 

While tinnitus can lead to hearing loss, sometimes it’s actually the noise itself that interferes with your ability to hear properly.

“It can literally be deafening and it’s a sound you can’t get away from,” says Tilston.

“When you ask people to repeat themselves, you are not being ‘difficult’ or not listening but you’re struggling to hear over the ringing.”

Tilston says sometimes this means she has to limit background noise - such as turning off the TV - while having a conversation.

Hearing aids offer double relief for those with tinnitus. Not only do they amplify ambient sounds, making them easier to hear, but this very act can also distract you from the constant tinnitus noise.

For some, this creates a welcome reprieve. The RNID even recommends combination devices, which integrate amplification with built-in sound generation specifically designed to mask tinnitus.

Work with an audiologist to get it right

However, individual experiences vary. As Tilston mentions, her journey with hearing aids has been "hit and miss", highlighting that this approach is not universally successful.

“It’s quite difficult to set it due to the fluctuation of my hearing and the loudness of my tinnitus,” she says.

“On a positive note, if you can work with a good audiologist, they can help and have helped me not to strain my hearing more over the noise of the tinnitus.”

In the end, tinnitus is a very individual condition and what works for some doesn’t work for others.

By recognising the diversity of experiences and embracing the multifaceted nature of the condition, individuals can seek appropriate support and resources to navigate the intricacies of living with tinnitus.

As Tilston says: “I’d love people to understand that everyone’s tinnitus affects them differently. Just because you can’t see it, it doesn’t mean it’s not happening!”