Steve Watkins used to love his life working as tennis coach, playing golf and cycling in his spare time and socialising.

Nowadays, he struggles to leave the house on his own, is unable to work, and finds it nearly impossible to walk in a straight line. “It feels like I’m walking during an earthquake and the ground is constantly shifting,” says Steve, 54.

Steve suffers from a prevalent balance – or vestibular – disorder stemming from an issue in the inner ear, a situation he shares with approximately 3.5 million people in the UK experiencing similar inner ear-related balance issues. Although it’s more common in those over 70, many younger individuals also face significant life impairment due to this condition.

“Balance issues are remarkably frequent, affecting 5 percent of the UK population with a vestibular issue (usually linked to the inner ear) annually,” notes Professor Peter Rea, a consultant ear, nose, and throat surgeon at University Hospitals of Leicester NHS Trust.

Other frequent causes of balance disturbances include Meniere’s disease (which involves a pressure change in the inner ear causing intense dizziness, nausea, and hearing loss); vestibular migraine (migraines that also cause dizziness); and benign paroxysmal positional vertigo (BPPV), characterized by ‘crystals’ in the inner ear moving out of place, provoking a spinning sensation.

It’s a bigger problem than just being unsteady on your feet.

Mr. Rea explains: “In the UK, 30 percent of people visit their GP before reaching 65 due to a balance issue, which then becomes the leading cause for GP visits among those over 75. It’s also a major factor in falls, leading to hospital admissions, significantly straining the NHS financially.”

However, because balance disorders aren’t directly life-endangering, they often receive less research focus and awareness, says Emma Stapleton, a consultant ear, nose, and throat surgeon at Manchester Royal Infirmary: “Balance is incredibly intricate, so if a GP has just ten minutes with a patient and lacks a specialty in that area, expecting them to pinpoint the issue is unrealistic.”

So many patients can wait months, even years, for their condition to be identified.

It took around a year and a half for Steve to be diagnosed – with not one, but three inner-ear problems affecting his balance.

‘It feels like I’m walking in an earthquake and that the ground’s moving all the time,’ says Steve Watkins, 54

He started to experience dizzy spells once or twice a week in early 2020 – and a couple of months later, they occurred daily.

‘The room would suddenly start spinning and I’d have to sit down,’ recalls Steve, who lives in Worksop with his wife Rebecca, 55 a charity worker.

‘By that summer it was so consistent it was like being drunk all the time and trying to navigate through a hall of mirrors at a fairground.

‘I felt like I was going crazy – I kept asking my wife if I was staggering around, but she’d say I looked fine.’

He adds: ‘It was difficult trying to convince people I knew that there was a problem because on the outside I looked fit and healthy.’

Steve was referred to an ear, nose and throat clinic, where tests suggested he had a balance disorder – but due to Covid delays, it took until the end of 2020 to get an initial diagnosis of vestibular failure: balance system function, rated out of 100, had plummeted to almost zero in both ears.

The condition occurs when there is damage to the vestibular system – made up of three fluid-filled semicircular canals and two structures (the saccule and utricle) – in the inner ear.

Common causes of vestibular failure are head injury, autoimmune disease, genetic disorders and infections, such as meningitis – it can also be a side-effect of some medications, such as the antibiotic gentamicin.

The brain uses sensory input from the eyes, joints and the inner ears to work out where your body is in space, then sends signals to control your balance via nerves and muscles, explains Mr Rea.

As well as vestibular failure in both ears, Steve has oscillopsia – an error in the way the eyes relay key information to help us maintain balance and stable vision.

‘It means everything is jumping up and down – it’s like the view from an old camcorder,’ says Mr Rea.

Steve also has persistent postural perceptual dizziness (PPPD), chronic dizziness and unsteadiness caused by the brain misinterpreting the signals coming from the eyes, inner ears and joints.

Access to NHS balance services is a huge issue and waiting times for an appointment at a specialist centre are often 12 months (picture posed by model)

He was given physiotherapy exercises to do four times a day, such as moving his head up and down while trying to focus on one point on the wall.

The exercises can help people with many balance disorders by rewiring the nerve signals from the eyes and ears, in turn restoring normal signals to the brain.

But the exercises had minimal benefit for Steve as he has no inner-ear function left.

And it’s unclear why he developed his problems.

‘When balance issues are unexplained, there could be a genetic component or a viral infection may have contributed – for example, we saw many patients with severe dizziness and hearing loss as a result of Covid, suggesting it impacted the inner ear,’ suggests Mr Rea.

Steve, who has two adult sons, says: ‘My condition has affected my everyday life hugely. I had to stop working as a tennis coach in 2023 and we moved out of London to be closer to family for support. I also stopped driving because I didn’t feel safe.

‘I’d been a keen golfer and cyclist – my identity had been about sports, but now all of that is gone – so it’s been very tough.’

Professor Peter Rea, a consultant ear, nose and throat surgeon at University Hospitals of Leicester NHS Trust

Brain fog is also a problem for him, ‘because I’m using most of my conscious brain trying not to fall over, it can be hard to concentrate’, Steve explains.

Even getting a diagnosis is a real issue: ‘It’s difficult to pinpoint exactly what’s happening in the inner ear because it’s buried inside your head, and people often find it hard to use the right language to describe their symptoms,’ says Mr Rea, which means patients are often dismissed, despite effective treatments being available.

For example, BPPV can be treated with a manoeuvre to reposition the crystals in the inner ear; vestibular migraine can usually be reduced with dietary changes such as cutting out red wine, chocolate and caffeine or medications – and steroids injected into the inner ear can reduce attacks of Meniere’s disease by 90 per cent.

‘These measures can be life-changing,’ says Mr Rea.

‘Yet I often see patients who have suffered for months, years – even decades – without proper diagnosis let alone treatment.’

Access to NHS balance services is a huge issue and waiting times for an appointment at a specialist centre are often 12 months – and many areas in the UK have limited access to balance services, he adds.

‘It’s also not always clear what the cause of dizziness is – it can be an inner-ear problem, but it can be a myriad of other things such as anxiety, diabetes and anaemia, so it can often take years for people to get an accurate diagnosis,’ says Mr Rea.

But a new diagnostic tool could help. The continuous ambulatory vestibular assessment (CAVA) device, funded by the National Institute for Health and Care Research, is being developed to detect which condition is causing vertigo.

‘During an attack, the eyes flicker in a specific way depending on the condition causing it, meaning there’s a different flickering pattern for BPPV, vestibular migraine and Meniere’s, for example,’ explains Mr John Phillips, a consultant ear, nose and throat surgeon at Norfolk and Norwich University Hospital and principal investigator of the CAVA project.

‘I’d been a keen golfer and cyclist – my identity had been about sports, but now all of that is gone – so it’s been very tough,’ says Steve

The device, which is like a hearing aid, is connected to electrodes placed around both temples. It’s worn for 30 days and has an built-in monitor which records the eye flickering pattern; computer algorithms are used to identify the condition associated with the pattern.

‘Our aim is that in a few years’ time, you can go to your GP with dizziness and get a diagnosis after wearing the device,’ explains Mr Phillips.

And emerging treatments are offering hope to patients such as Steve.

These include a device called the BalanceBelt that’s recently been trialled in a handful of NHS hospitals.

Worn around the waist, it is fitted with motion sensors and vibration motors: if it detects the wearer is swaying too far to one side, for example, vibrations are sent to signal to the brain that it needs to adjust the patient’s posture to keep them stable.

A study by Maastricht University in the Netherlands found the mobility and balance scores of 23 participants with vestibular failure significantly improved after using the belt for a month, reported the Journal of Neurology in 2018. (Sadly the device didn’t work for Steve when he tried it for eight weeks in 2022.)

Meanwhile scientists in Switzerland, the Netherlands and the US are developing a vestibular implant which would bypass the damaged part of the inner ear and restore vestibular function.

As Mr Rea explains: ‘Wires are inserted in to or on to the semicircular canals in the ear. They send electrical signals to the inner ear and these are transmitted to the brain which, in turn, can then sense movement.’

Despite Steve’s shattering diagnoses, he remains positive and joining a balance support group, Life on the Level, has helped. He also started cycling again last summer after getting a Jorvik electric tricycle.

‘Being active again on my trike has been a game changer physically and mentally,’ he explains.

‘I hope that new research or treatments mean I don’t have to live like this forever.’