Gargoyles, tarantulas, bloodied children: Research begins into mystery syndrome where people see visions of horror

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anxiety, blindness, charles bonnet syndrome, Depression, hallucinations, isolation, mental health issues, neuroscience, stress, treatment, visions, visually impaired

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Gargoyles, tarantulas, bloodied children: Research begins into mystery syndrome where people see visions of horror

Estimated one million visually impaired people in UK are thought to experience bizarre ultra-lifelike hallucinations – including spiders crawling from books and Victorian families appearing in crowds.

The first time Dr Amit Patel saw the girl in his home he was so astonished he fell down the stairs.

“She was so vivid,” he remembers today. “I could see the detail on her dress. There was blood smeared on her face.”

A month earlier, in November 2012, the former A&E medic had gone suddenly blind after catastrophic haemorrhaging in both eyes.

As he attempted to negotiate a world without sight, the girl – or rather a crystal-clear vision of one; white dress, black hair, bloodied and bruised – appeared without warning. And she has been doing so ever since.

“I can be working, walking down the street, with the kids, and she’ll suddenly be there,” the 40-year-old father-of-two says. “She once watched me change my daughter’s nappy. She’s always on trains.”

This is Charles Bonnet Syndrome – and an estimated 1 million partially sighted and blind people in the UK are believed to live with it.

They see – often on a near daily basis – intensely real, hyper-detailed visions. Sometimes these are benign: flowers sprouting, musical notes hanging in the air or rainbows forming.

But for many – for reasons which nobody understands – the scenes come tinged with horror. Tarantulas crawl out of books, gargoyles appear amid friends, zombies turn up in homes. In an online post, one UK sufferer, describes seeing a person crumble to dust in front of them. Dr Patel likens his visitor to the girl in The Ring. “Used to love that film,” he says today. Now, he’s less enamoured.

“Something I hear a lot is it’s like being inside a horror movie,” says Judith Potts, founder of Esme’s Umbrella, the UK’s only charity dedicated to the condition. “People know it’s not real but they can’t switch it off. There is no cure. They cannot escape.”

A major study being carried out by neuroscientists at the University of Oxford will this summer begin investigating what might cause CBS. In doing so, they hope to, firstly, destigmatise an illness which many are believed to suffer with silently for fear their sanity may be questioned, and, secondly, lay the groundwork for finding an eventual treatment.

Crucially, while it has long been established that the syndrome is to do with the eye’s interaction with the brain – as opposed to being a form of psychosis or dementia – the research will aim to establish what exactly is happening within that process.

“It is so important,” says Ms Potts. “This affects every part of people’s lives. If you wake up in a morning and see a tiger in your doorway that’s so real you can see the saliva on its teeth – that’s just one example of someone I spoke to recently – if you see that, it is so terrifying that, even though you know it’s not real, the anxiety puts huge stress on your life.

“Some people won’t go out as much because they don’t want to have these visions in public, or they become depressed. They have accidents. You can imagine it’s rather distracting suddenly being confronted by a Victorian family as you walk down the street.”

She herself founded Esme’s Umbrella in 2015 because her mother – the Esme in question – had suffered with the condition but found nowhere to turn: “A wonderful lucid woman who did the cryptic crossword everyday but who also happened to see gargoyles jumping around her kitchen,” notes Ms Potts.

Charles Bonnet Syndrome itself was first identified in 1760 by the Swiss naturalist and philosopher whose grandfather – a sane and cogent man – confided in his grandson that he had started seeing birds he knew could not possibly be there.

Yet, perhaps, because the condition appears to cause no apparent physical or mental deterioration, research has been sparse and wider knowledge of it remains hugely limited.

Despite estimates that half of all visually impaired people in the UK suffer – a figure put forward by the King’s College London neuroscientist Dr Dominic Ffytche – most have never heard of it until they are diagnosed. It was only four years ago, indeed, that the Royal College of Ophthalmologists started advising its doctors they should ask patients as a matter of routine if they experienced hallucinations in a bid to better understand the syndrome.

The fact the visions are so often characterised by something vaguely dreadful is, one expert told The Independent, “beyond the current limit” of scientific understanding.

Stress, isolation and anxiety may spark the visions, some believe. But even this is open to interpretation – because the visions probably increase stress and anxiety levels.

“The first time it happened I thought I was losing my mind,” says Arthur Anston, a 71-year-old retired sales director, as he describes an unknown person suddenly appearing as he travelled in a car with his wife.

“They started very modern-looking, then their appearance went back in time – Victorian, Roman – until I had a prehistoric man looking at me,” he adds.

So scared was he that his son-in-law immediately took him to hospital. “No one ever told me when I started losing my sight this might happen,” the grandfather-of-two from Manchester says. “I’d never heard of CBS. All I knew was I was seeing something that no one else was. It was disturbing.”

It is a word commonly used by many of those diagnosed with the condition.

For Nina Chesworth, the first time she saw visions was just days after suffering the trauma of losing her sight during a home accident in 2018. Kaleidoscopic rainbows and coloured patterns suddenly appeared as she lay in hospital, eventually progressing, over the next few weeks, into unicorns.

“I’m a graphic designer by training,” the 38-year-old mother-of-one says. “So, I was a bit like, ‘Well, this is interesting’. I would observe all these colours and patterns. I found them comforting in a way. I still do sometimes.”

At one point she saw Danger Mouse. “I loved Danger Mouse,” she says. “That was lovely.”

Then, however, came the zombies and snarling dogs.

“I was sat on the sofa at home the first time,” the mother-of-one from Manchester recalls. “I was too scared to move for hours. It’s not like you can shut your eyes and stop seeing it. It stays right there in front of you.”

Now she has got used to the strange mix of visitors she is less concerned – “sometimes I sit studying them” – but they have caused her accidents, led to plans being cancelled and can make the world feel overwhelming.

“As a blind person you rely on all your other senses but when the visions start, they can take over,” she says. “They are incapacitating, even when it’s not bad stuff you’re seeing.”

It is for this exact reason that Esme’s Unbrella and the Fight For Sight charity are now funding the new research.

Pertinently, with 4 million people in the UK set to have some form of visual impairment by 2050 – a number which would result in a possible 2 million people with CBS – experts say it is more crucial than ever to get a grip on the syndrome.

“So much more needs to be done to understand this,” says Sherine Krause, chief executive of Fight For Sight. “With a better understanding of the causes, we will be one step closer to developing a treatment and a cure.”

The study will see some 20 people – 10 with CBS and 10 without – have certain chemicals in their brains measured and monitored over a period of time.

“By looking at that, we can see if there may be an imbalance in chemistry in the visional system that may be a cause of these really weird visions,” says Holly Bridge, a professor of neuroscience leading the study. “If we can establish that, then it can become possible lead to treatment because you could look to develop ways of changing those chemical balances. In the very long term, it may well be that you could develop an appropriate drug to keep those chemical levels in proportion.”

Early results will come within 12 months and a fully published paper within 18 – but a treatment, of course, might not arrive for years.

All the same, back with Amit in London – flanked by trusty guide dog Kika – he longs for the day when the girl from The Ring is no longer a regular visitor. He would not, it is safe to say, miss her.

“I was thinking the other day,” he says, “she’s been in my life longer than my children. It would be nice now to be rid of her”.

When intensive care is just too intense

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critical care, delusions, Depression, discomfort, disorientated, distress, drugs, early intervention, fears, flashbacks, hallucinations, intensive care, intrusive memories, nightmares, psychological difficulties, stress, techniques, threat, treatment

When intensive care is just too intense

I still remember the first patient I saw in intensive care. A naked man, covered by a white sheet, was plugged into banks of machines through cables that radiated from his body. His face was covered by a breathing mask, his blood connected to bags of fluids. Muted and voluntarily immobile, so as not to break the fragile web that kept him alive, his eyes tracked me as I entered the cubicle. Intensive care can be a disconcerting place.

As a treatment, it is remarkably successful. Perhaps the greatest tribute to the people who work in critical care is this simple fact: most people leave intensive care alive – despite being dangerously close to death when they arrive. Through a combination of dedication, decision-making and technology, critical care staff ensure that most people pull through. This is the result of years of careful research that has focused clinical practice on restoring the body’s functioning as quickly and efficiently as possible.

But recently there has been a dawning realisation that the impact of intensive care extends beyond the survival of the body. Dorothy Wade is based at University College Hospital in London and is one of the country’s few intensive care psychologists. She led a recent study which found that more than half of patients assessed at follow-up had marked psychological difficulties. “We learned that patients were suffering from serious depression or having frightening flashbacks and nightmares to their time in intensive care,” says Wade. “This badly affected their quality of life and also held back their physical recovery from their illness.”

In another study, recently submitted for publication, Wade interviewed patients about the hallucinations and delusions they experienced while in intensive care. One patient reported seeing puffins jumping out of the curtains firing blood from guns, another began to believe that the nurses were being paid to kill patients and zombify them. The descriptions seem faintly amusing at a distance, but both were terrifying at the time and led to distressing intrusive memories long after the patients had realised their experiences were illusory.

Many patients don’t mention these experiences while in hospital, either through fear of sounding mad, or through an inability to speak – often because of medical breathing aids, or because of fears generated by the delusions themselves. After all, who would you talk to in a zombie factory?

These experiences can be caused by the effect of serious illness on the brain, but painkilling and sedating drugs play a part and are now used only where there is no alternative. Stress also adds to the mix but is often caused inadvertently by the way intensive care wards are organised. “If you think about the sort of things used for torture,” says Hugh Montgomery, a professor of intensive care medicine at UCL, “you will experience most of them in intensive care. As a patient, you are often naked and exposed, you hear alarming noises at random times, your sleep-wake cycle is disrupted by being woken up for medical procedures through the night, you will be given drugs that could disorient you, and you will be regularly exposed to discomfort and feelings of threat.”

This has led to a recent push to reorient treatment toward reducing patient stress, and long-term psychological problems, without sacrificing life-saving efficiency. Take this simple example: a study led by consultant critical care nurse John Welch at UCL found that the pitch or tone of alarms on intensive care equipment has no relation to how urgent the situation is. Many frightening-sounding alarms are just reminders – this bag needs refilling in the next hour; don’t forget to change the filter – and are often left until more important tasks are finished. But, to the uninitiated, it might sound as if death is imminent and no one is responding.

Some stress is simply an unavoidable part of necessary medical procedures. Breathing tubes inserted through the mouth or surgically implanted through the neck are notoriously uncomfortable. And, despite the survival rates, people die in intensive care. A daunting experience if you’re a patient in the same ward.

Helping patients with their intense emotional reactions, whether they arise from hallucination, misunderstanding or medical intervention, normally happens on an ad hoc basis and for many clinicians it is a relatively new situation that hasn’t been incorporated into standard training. In many intensive care units, the approach was to sedate patients for the whole of their admission. As this practice declined, for the first time, clinicians were faced with distressed, possibly hallucinating, awake patients.

Wade is currently working with clinicians to take a more systematic approach to detecting and reducing psychological distress. “There have always been experienced or just naturally empathetic nurses and doctors in intensive care,” she says. “We’re trying to build on that natural care and compassion by teaching nurses and doctors more about the causes and nature of psychological distress… and training them with simple psychological techniques that could help to reduce immediate and long-term distress.”

For his part, Montgomery is less convinced about early intervention. He feels intensive care needs to be reorganised to reduce stress but psychological problems are best dealt with in follow-up clinics.

The best time for treatment is the subject of an ongoing debate, but for the first time studies have been funded that will answer these questions. Intensive care is being rethought and may become, at least psychologically, less intense.

At last, a promising alternative to antipsychotics for schizophrenia

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antipsychotic drugs, causes, cognitive treatment, delusion, dropout rates, hallucinations, medication, psychosis, schizophrenia, side-effects, treatment

At last, a promising alternative to antipsychotics for schizophrenia

Imagine that, after feeling unwell for a while, you visit your GP. “Ah,” says the doctor decisively, “what you need is medication X. It’s often pretty effective, though there can be side-effects. You may gain weight. Or feel drowsy. And you may develop tremors reminiscent of Parkinson’s disease.” Warily, you glance at the prescription on the doctor’s desk, but she hasn’t finished. “Some patients find that sex becomes a problem. Diabetes and heart problems are a risk. And in the long term the drug may actually shrink your brain … ”

This scenario may sound far-fetched, but it is precisely what faces people diagnosed with schizophrenia. Since the 1950s, the illness has generally been treated using antipsychotic drugs – which, as with so many medications, were discovered by chance. A French surgeon investigating treatments for surgical shock found that one of the drugs he tried – the antihistamine chlorpromazine – produced powerful psychological effects. This prompted the psychiatrist Pierre Deniker to give the drug to some of his most troubled patients. Their symptoms improved dramatically, and a major breakthrough in the treatment of psychosis seemed to have arrived.

Many other antipsychotic drugs have followed in chlorpromazine’s wake and today these medications comprise 10% of total NHS psychiatric prescriptions. They are costly items: the NHS spends more on these medications than it does for any other psychiatric drug, including antidepressants. Globally, around $14.5bn is estimated to be spent on antipsychotics each year.

Since the 1950s the strategy of all too many NHS mental health teams has been a simple one. Assuming that psychosis is primarily a biological brain problem, clinicians prescribe an antipsychotic medication and everyone does their level best to get the patient to take it, often for long periods. There can be little doubt that these drugs make a positive difference, reducing delusions and hallucinations and making relapse less likely – provided, that is, the patient takes their medication.

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Unfortunately, dropout rates are high. This is partly because individuals sometimes don’t accept that they are ill. But a major reason is the side-effects. These vary from drug to drug, but they’re common and for many people are worse than the symptoms they are designed to treat.

In addition, antipsychotics don’t work for everyone. It is estimated that six months after first being prescribed them, as many as 50% of patients are either taking the drugs haphazardly or not at all.

The conventional treatment for this most severe of psychiatric illnesses, then, is expensive, frequently unpleasant, and not always effective even for those who carry on taking the drugs. But it is what we have relied upon – which helps to explain why the results of a clinical trial, recently published in The Lancet, have generated so much interest and debate.

A team led by Professor Anthony Morrison at the University of Manchester randomly assigned a group of patients, all of whom had opted not to take antipsychotics, to treatment as usual (involving a range of non-pharmaceutical care) or to treatment as usual plus a course of cognitive therapy (CT). Drop-out rates for the cognitive therapy were low, while its efficacy in reducing the symptoms of psychosis was comparable to what medication can achieve.

So what exactly is CT for schizophrenia? At its core is the idea that the patient should be encouraged to talk about their experiences – just as they would for every other psychological condition. Psychosis isn’t viewed as a biological illness that one either has or does not have. Instead, just like every other mental disorder, psychotic experiences are seen as the severest instances of thoughts and feelings – notably delusions and hallucinations – that many of us experience from time to time.

Working together, the patient and therapist develop a model of what’s causing the experiences, and why they’re recurring. These factors will vary from person to person, so what is produced is a bespoke account of the individual’s experience, which is then used to guide treatment. For example, a person so worried by paranoid fears that they won’t set foot outside might be helped to trace the roots of their anxiety to past experiences; to gradually test out their fearful thoughts; and to learn to manage their anxiety while getting on with the activities they enjoy. An individual troubled by hearing voices will be helped to understand what’s triggering these voices, and to develop a more confident, empowering relationship with them.

These are early days. Nevertheless, most of the meta-analyses of CT’s efficacy for psychosis, when added to standard treatment, have indicated definite (albeit modest) benefits for patients, with the latest showing that CT is better than other psychological treatments for reducing delusions and hallucinations. The latest guidelines from the UK’s National Institute for Health and Care Excellence (Nice) recommend it for those at risk of psychosis and, when combined with medication, for people with an ongoing problem.

But not everyone is convinced, and although the research published in The Lancet is encouraging, it was small scale. CT for psychosis is still evolving, and we think that evolution should prioritise three key areas.

First, we must focus on understanding and treating individual psychotic experiences. As we’ve reported in a previous post, there is increasing reason to doubt the usefulness of the diagnosis “schizophrenia”. The term has been used as a catch-all for an assortment of unusual thoughts and feelings that often have no intrinsic connections, and aren’t qualitatively different from those experienced by the general population. Each psychotic experience may therefore require a tailored treatment.

Second, we must build on the recent transformation in understanding the causes of psychotic experiences, taking one factor at a time (insomnia, say, or worry), developing an intervention to change it, and then observing the effects of that intervention on an individual’s difficulties.

And finally, we must listen to what patients want from their treatment – for example, by focusing on improving levels of wellbeing, which tend to be very low among people with schizophrenia.

What about costs compared with drug treatment? A course of CBT is typically just over £1,000, but if it leads to a reduction in the amount of time patients spend in hospital and their use of other services, or a return to work, then it easily pays for itself.

The Nice guidance on psychosis and schizophrenia, updated this year, is unequivocal:

“The systematic review of economic evidence showed that provision of CBT to people with schizophrenia in the UK improved clinical outcomes at no additional cost. This finding was supported by economic modelling undertaken for this guideline, which suggested that provision of CBT might result in net cost savings to the NHS, associated with a reduction in future hospitalisation rates.”

If the real promise of cognitive therapy can be fulfilled, we may at last have a genuinely effective, relatively cheap, and side-effect-free alternative to antipsychotics for those patients who don’t wish to take them. Watch this space.

Daniel and Jason Freeman are the authors of Paranoia: the 21st Century Fear. Daniel is a professor of clinical psychology and a Medical Research Council Senior Clinical Fellow at the University of Oxford, and a Fellow of University College, Oxford. Twitter: @ProfDFreeman. Jason is a psychology writer. Twitter: @JasonFreeman100

New hope to treat schizophrenia with therapist-controlled avatars

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avatars, hallucinations, hearing voices, schizophrenia, Therapy

New hope to treat schizophrenia with therapist-controlled avatars

Scientists are examining whether computer-generated avatars can help patients with schizophrenia.

The avatars are designed by patients to give a form to voices they may be hearing, then controlled by therapists who encourage patients to oppose the voices and gradually teach them to take control of any hallucination.

A new study has been launched to assess the effectiveness of using the technology. Researchers, who have been given a £1.3m grant from the Wellcome Trust, hope that the system could provide “quick and effective therapy” to help patients reduce the frequency and severity of episodes.

Almost all of the 16 patients who underwent up to seven 30-minute sessions in a pilot study conducted by researchers at University College London (UCL) reported a reduction in the frequency and severity of the voices that they heard.

Three of the patients stopped hearing voices completely.

Julian Leff, emeritus professor of mental health sciences at UCL, who developed the therapy and is leading the project, said: “Patients interact with the avatar as though it was a real person, because they have created it they know that it cannot harm them – as opposed to the voices, which often threaten to kill or harm them and their family. As a result, the therapy helps patients gain the confidence and courage to confront the avatar, and their persecutor.

“We record every therapy session on MP3, so that the patient essentially has a therapist in their pocket which they can listen to at any time when harassed by the voices. We’ve found that this helps them to recognise that the voices originate within their own mind and reinforces their control over the hallucinations.”

The larger study, which will be conducted at the King’s College London Institute of Psychiatry, will begin enrolling patients in early July. The first results are expected towards the end of 2015.

“Auditory hallucinations are a very distressing experience that can be extremely difficult to treat successfully, blighting patients’ lives for many years,” said Professor Thomas Craig of the King’s College London Institute of Psychiatry, who will lead the larger trial.

“I am delighted to be leading the group that will carry out a rigorous randomised study of this intriguing new therapy with 142 people who have experienced distressing voices for many years.

“The beauty of the therapy is its simplicity and brevity. Most other psychological therapies for these conditions are costly and take many months to deliver. If we show that this treatment is effective, we expect it could be widely available in the UK within just a couple of years as the basic technology is well developed and many mental health professionals already have the basic therapy skills that are needed to deliver it.”

Paul Jenkins, chief executive of the charity Rethink Mental Illness, added: “We welcome any research which could improve the lives of people living with psychosis. As our Schizophrenia Commission reported last year, people with the illness are currently being let down by the limited treatments available. While anti-psychotic medication is crucial for many people, it comes with some very severe side effects. Our members would be extremely interested in the development of any alternative treatments.”

Schizophrenia is estimated to affect around 400,000 people in England.

The most common symptoms are delusions and auditory hallucinations. Experts estimate that as many as one in four patients do not benefit from drugs which help people with the condition.