As a migraine sufferer, Cameron Hathaway was very used to feeling dizzy during the attacks.
But when he developed a new, disorientating ‘rocking’ sensation last summer, which persisted even after his migraine had passed, he was worried.
‘I had a spinning feeling during the migraine, but what followed was more of a rocking motion – everything around me was moving,’ says Cameron, 27, a physiotherapist from Leeds.
‘All I wanted to do was lie down.’
Initially, this sensation would last a few hours but pass – however, it then became a more persistent feeling of unsteadiness and disorientation.
Worried he might have a brain tumour, Cameron saw a GP, who said the dizziness was due to migraine, even though it was now occurring without his other typical symptoms, such as headache.
Another GP arranged an MRI scan to put Cameron’s mind at ease, which ruled out a brain tumour.
But compounding his problems was eye strain, caused as he tried to maintain his balance when everything seemed unsteady around him, and his symptoms started to hamper his daily life seriously.
He could no longer read for very long and when travelling on trains or cars became violently ill with motion sickness. Over several months, he began to withdraw from social life.
‘I had to stop work because I need to read for my job,’ he says.
Cameron Hathaway, 27, who suffers from Persistent Postural-Perceptual Disorder
‘I stopped going to the gym as that was too difficult, and I couldn’t run either. I couldn’t even watch football on TV, which I used to love.
‘My time away from home was becoming limited to walking to the end of the road – it was all I could manage. I was mentally and physically exhausted, and life was miserable.’
Over the next six months, Cameron saw two neurologists, who both insisted he was suffering from chronic migraine symptoms.
The first said there was nothing that could be done except control his environment and diet, to reduce any triggers for a migraine attack.
The second doctor prescribed beta-blockers to ease his anxiety. But these measures failed to bring any relief.
Feeling desperate, and by now suffering constant dizziness and intensification of symptoms, he went private.
In April he saw Dr Diego Kaski, a neurologist at the National Hospital of Neurology and Neurosurgery in London, who specialises in balance disorders.
He explained that, rather than being a symptom of his migraine, Cameron’s unsteady episodes were caused by persistent postural-perceptual dizziness (PPPD), also known as 3PD.
‘It is one of the most common conditions that balance specialists see – it’s just that many GPs and emergency physicians are unfamiliar with it,’ says Dr Kaski
‘Because 3PD commonly follows other inner-ear disorders, it is hard to pick up.’
Although this set of symptoms has been known about for many years, 3PD was only classified as a neurological disorder in 2017.
It often occurs after other inner-ear balance (or ‘vestibular’) disorders, including migraine, but can also follow a whiplash injury or concussion or anything that affects balance.
It causes chronic dizziness with a constant feeling of being unsteady, or swaying and rocking.
‘When something – like an inner-ear problem – causes dizziness, the brain goes into hypervigilant mode,’ says Dr Kaski.
‘This is initially a useful response, but sometimes, even when the cause of the dizziness resolves, that hypervigilance response, unhelpfully, continues, and the symptoms of 3PD begin.’
Normally, the brain receives information from receptors in the ears, eyes and feet in order to keep us upright and steady.
Cameron said: ‘My time away from home was becoming limited to walking to the end of the road – it was all I could manage’
When there is a problem with the balance system in the ears, the brain becomes less reliant on it to maintain our balance – and instead becomes more reliant on information from other receptors, particularly the eyes.
As Dr Kaski explains: ‘With 3PD, the patient becomes “visually dominant”, with the eyes doing all the work instead of it being a joint effort between the inner ear. As a result, the brain incorrectly processes the information and predicts motion when there isn’t any.’
This incorrect processing leads to a constant feeling of dizziness or unsteadiness when upright, moving, or in busy visual environments, such as supermarkets or crowded places.
And because the symptoms are present all the time, 3PD sufferers often become anxious about losing their balance or falling, and may avoid situations that make their symptoms worse – creating a vicious cycle of worsening symptoms due to this anxiety.
‘3PD is like a software problem on a computer – the hardware [receptors in the ears, eyes and feet] are all working, but the software [i.e brain processing] is malfunctioning,’ says Dr Kaski. ‘The brain of a patient with 3PD needs to be “recalibrated” or, to use the computer analogy, rebooted.’
To do this, treatment involves the patient being exposed to movements or situations that have previously prompted their dizziness at a controlled, low level. Exposing the brain to lots of visual and motion stimuli in this way – known as ‘vestibular rehabilitation’ – is thought to improve its ability to understand the information given to it, and ‘relearn’ how to balance.
‘Patients are encouraged to rationalise rather than catastrophise when triggered, using techniques to focus on small areas of interest and filter the visual information around them,’ explains Dr Kaski. ‘This exposure helps the brain to habituate to triggering events or settings.’
Dr Diego Kaski, of the National Hospital of Neurology and Neurosurgery in London
In Cameron’s case, ‘something that involved standing still, such as washing up, was difficult so, as Dr Kaski instructed, I exposed myself to this trigger – initially spending a minute or two washing up, and then building it up so I could do it for longer and longer. I then did exactly the same with reading and driving.’
Often patients will also have anxiety that can worsen their 3PD, in which case mindfulness techniques can help by reducing anxiety that can trigger episodes, says Debbie Cane, an audiologist at Withington Community Hospital and a researcher in vestibular disorders and their management at the University of Manchester.
‘These include being aware of breathing poorly or holding your body tensely; having regular breaks in activities; and being able to turn towards symptoms without anxiety,’ she adds
Dr Kaski, who is also an honorary associate professor at the University College Hospital
London, is leading a trial into visualisation mindfulness to help 3PD symptoms.
Some specialists believe depression and anxiety can trigger 3PD by worsening perceptions of dizziness – and will prescribe mild antidepressants. ‘But this treatment is over-utilised in my opinion,’ says Dr Kaski.
‘Anxiety and depression can be common symptoms of 3PD, but they don’t cause it.
‘However, there are traits that can leave certain types of people prone to 3PD, such as those who are very driven, who suffer some degree of anxiety, or who hold negative beliefs about illness. People with OCD or other neurotic traits can be more likely to develop it.’
For Cameron, ‘a big part of my treatment was awareness that my brain was over-sensitive to motion around me, and to
learn not to be afraid of 3PD symptoms. The diagnosis helped me to calm down, and
consequently my 3PD symptoms improved.’
He’s also been encouraged to manage his migraines.
‘The approach to migraines was to avoid triggering one by controlling my environment, by keeping well hydrated, managing stress and getting enough sleep,’ says Cameron.
‘Over time, things have improved – I would say I’m about 70 per cent recovered now.
‘I can even read up to 20 pages at one time without feeling dizzy or straining my eyes, so I am now thinking about going back to work soon.’
