Eye disease that’s struck Judi Dench made me hallucinate
Terrifying side-effect of condition that blights thousands
FORMER social worker Vee St John-byles is not given to flights of fancy. She also rarely drinks. So when she suddenly started seeing spiders everywhere, she genuinely wondered if she was losing her mind.
The problem started in 2008 as she relaxed at home one evening in her sitting room in Stranraer, in Scotland. She suddenly saw a spider making its way across her shoulder.
Vee, 60, screamed and jumped up, and noticed another spider was on her hand. Then she realised that although the spider looked real, she could not feel it.
‘My first thought was “Am I going mad?”,’ says Vee. ‘I was trying to brush this spider off my hand, but I couldn’t feel it. It stayed around for a few minutes.’
From then on she saw these spiders at least once a day. ‘It was torture for me — spiders are one of the few things I am really scared of,’ she recalls. ‘But even more scary was the thought my mind was going.’
Vee was so concerned she was losing control that for 18 months she told no one, not even her husband Paul. But finally, one evening as she watched spiders yet again run down the wall of her front room, she asked Paul if he could see them, too.
‘When he said he couldn’t, my heart sank,’ she says.
The spiders weren’t real — yet Vee was anything but mad. She had a condition called Charles Bonnet syndrome, a relatively common, yet little known, visual problem which leads to hallucinations.
It affects people with fading eyesight, most often as a result of age-related macular degeneration (AMD); Vee is so badly affected she can see little from her right eye. Around 600,000 Britons suffer from AMD — including, as it was revealed last week, Dame Judi Dench. What many of them won’t realise is that an estimated one in ten are also at risk of Charles Bonnet syndrome.
‘The figures could be higher as many people are too embarrassed to seek help about it,’ says Dr Dominic Ffytche, senior clinical lecturer at the Institute of Psychiatry, King’s College, London, and an expert in the condition.
AS HE explains, the hallucinations occur because when you lose your sight, even partially, there is a loss of visual signals to the brain.
‘As a consequence the brain cells fire off sparks in the visual areas of the brain — we think this might be as a result of the brain trying to rewire itself following sight loss. This leads to hallucinations,’ he says.
‘The images that people see depend on the area of the brain that’s affected — so some people see just colours, for example, while others might see faces.’
And it’s not just people with AMD who can develop Charles Bonnet Syndrome. It can occur in anyone who has a loss of vision, adds Dr Ffytche; people who find it difficult to read the bottom lines of a sight chart even with their glasses are also at risk.
Under guidelines published by the Royal College of Ophthalmol- ogists in 2009, patients diagnosed with AMD should be warned about the risk of Charles Bonnet syndrome. However, Cathy Yelf, of the Macular Disease Society, says it regularly hears from people who know nothing about this.
‘We are still getting calls from people who are frightened to death that they are losing their mind as well as their sight.’
Hallucinations typically begin a few weeks or months after the onset of the symptoms of AMD, says Dr Ffytche.
‘ The problem is that people don’t always link the hallucinations to their failing eye sight,’ he says. ‘ So, they might go to their GP who may also not link it to their sight. However, they may refer the patient on to a psychiatry department. Normally the psychiatrist will recognise the true cause of the hallucinations.’ Sometimes t he c ondition improves with time. ‘Moving your eye from left to right for 30 seconds also helps,’ says Dr Ffytche. Some people are prescribed antipsychotic drugs, thought to help by dampening down the brain’s overactivity.
The more sight you retain, the lower your risk of Charles Bonnet syndrome; so while on average those with AMD have a 10-15 per cent risk of developing i t, if someone has severe visual impairment that risk increases to 60 per cent, explains Dr Ffytche.
This is another reason why getting prompt treatment is vital.
AMD is the leading cause of blindness in this country. The biggest risk factor is age, but smoking, a diet low in fruit and vegetables, genetics, sun damage and being a woman also increase the risk. It is caused by the death of cells in the macula — a small area of the retina responsible for central vision.
There are two types: dry accounts for 90 per cent of cases. Debris builds up, causing symptoms such as blurring or blind spots, although sometimes there are no symptoms. Dry AMD progresses slowly over the years — and there is no treatment.
The other form is wet AMD, when blood vessels start to grow around the macula to try to remove the toxins no longer being naturally removed.
‘These blood vessels are fragile and can bleed beneath the macula,’ explains Sheena George, lead clinician for macular services at Western Eye Hospital, Imperial College Healthcare NHS Trust. ‘ People with this form may notice a central blind spot that is grey or cloudy.’
Swift treatment is vital — the leaking blood can destroy much of someone’s vision virtually overnight. ‘There should be no more than two weeks between diagnosis and treatment,’ says Miss George.
The usual treatment for wet AMD is with the drug Lucentis given once a month for two years — it stabilises the sight in 95 per cent of cases and improves it in 40 per cent, says Miss George.
HOWEVER not everyone with AMD gets treated in time. ‘There needs to be greater awareness among both medical professionals such as optometrists, GPS and the public about the urgency of the condition,’ says Miss George.
Vee is only too well aware of the importance of early treatment for AMD. She was living in Spain when she woke up one morning in 2006 with much of her vision obscured in her right eye. She went to an ophthalmologist out there who told her it was a sign of stress and that it would go within three months.
When she went back in three months with the problem still not better, he tried giving her laser treatment, which did nothing.
Without any diagnosis and having been told there was no more that could be done, in February 2008 she and her husband returned to the UK.
A family friend, an ophthalmologist, confirmed what Vee suspected having trawled the internet — that she had wet AMD.
Her GP referred her to an eye consultant. ‘He told me there was nothing he could do at this stage of the disease,’ she says, sadly.
‘AMD affects my life in so many ways. I don’t see stairs straight and often trip. I have trouble seeing my hands and often burn myself putting things into the oven.
‘And I have to deal with the Charles Bonnet, too.’
It was only when she contacted the Macular Disease Society two years after her diagnosis that she found she had this syndrome.
‘It was such a relief to know that I was not losing the plot,’ she says. ‘But I am really angry that I spent so long thinking there was something really wrong with my mind.’
Vee still has hallucinations daily. She has never sought medical treatment for them because, she says, her faith in the medical profession has been shaken.
‘I help myself instead — so for example I don’t watch much TV as it seems to make them worse.
‘And now I understand them I can deal with them. It was the not knowing that was so horrible.’
THE Macular Disease Society 0845 241 2041, maculardisease.org.