Posts tagged Charles Bonnet Syndrome

Posts tagged Charles Bonnet Syndrome
Vivid hallucinations experienced by people with sight loss last far longer and have more serious consequences than previously thought, according to new research from King’s College London and the Macular Society.

The study is the largest survey of the phenomenon, known as Charles Bonnet Syndrome, and documented the experiences of 492 visually impaired people who had experienced visual hallucinations. The findings, published in the British Journal of Ophthalmology, show there is a serious discrepancy between medical opinion and the realities of the condition.
Charles Bonnet Syndrome is widely considered by the medical profession to be benign and short-lived. However, the new research shows that 80% of respondents had hallucinations for five years or more and 32% found them predominantly unpleasant, distressing and negative.
The study described this group of people as having “negative outcome Charles Bonnet Syndrome”. The group was more likely to have frequent, fear inducing, longer duration hallucinations, which affected daily activities. They were more likely to attribute hallucinations to serious mental illness and were less likely to have been warned about the possibility of hallucinations before they started.
Of respondents, 38% regarded their hallucinations as startling, terrifying or frightening when they first occurred and 46% said hallucinations had an effect on their ability to complete daily tasks. 36% of people who discussed the issue with a medical professional said the professional was “unsure or did not know” about the diagnosis.
Dr Dominic ffytche, who led the research at the Institute of Psychiatry at King’s, says: “Charles Bonnet Syndrome has been traditionally thought of as benign. Indeed, it has been questioned whether it should even be considered a medical condition given it does not cause problems and goes away by itself. The results of our survey paint a very different picture.
“With no specific treatments for Charles Bonnet Syndrome, the survey highlights the importance of raising awareness to reduce the distress it causes, particularly before symptoms start. All people with Charles Bonnet Syndrome are relieved or reassured to find out about the cause of their hallucinations and our evidence shows the knowledge may help reduce negative outcome.”
People with macular disease are particularly prone to Charles Bonnet hallucinations. They are thought to be a reaction of the brain to the loss of visual stimulation. More than half of people with severe sight loss experience them but many do not tell others for fear they will be thought to have a serious mental illness.
Age-related macular (AMD) degeneration affects the central vision and is the most common cause of sight loss in the UK. Nearly 600,000 people have late-stage AMD today and more people will become affected as our population ages. Around half will have hallucinations at some stage.
Tony Rucinski, Chief Executive, the Macular Society, said: “It is essential that people affected by sight loss are given information about Charles Bonnet Syndrome at diagnosis or as soon after as possible.
“Losing your sight is bad enough without the fear that you have something like dementia as well. We need medical professionals to recognise the seriousness of Charles Bonnet Syndrome and ensure that people don’t suffer unnecessarily. More research is also needed to investigate Charles Bonnet Syndrome and possible ways of reducing its impact.”
Dr ffytche is also leading a large NIHR funded research programme on visual hallucinations to develop a much-needed evidence base to inform NHS practice in managing and treating the symptoms.
Hallucinations of musical notation: new paper for neurology journal Brain by Oliver Sacks
Professor of neurology, physician, and author Oliver Sacks M.D. has outlined case studies of hallucinations of musical notation, and commented on the neural basis of such hallucinations, in a new paper for the neurology journal Brain.
In this paper, Dr Sacks is building on work done by Dominic ffytche et al in 2000, which delineates more than a dozen types of hallucinations, particularly in relation to people with Charles Bonnet syndrome (a condition that causes patients with visual loss to have complex visual hallucinations). While ffytche believes that hallucinations of musical notation are rarer than some other types of visual hallucination, Sacks says that his own experience is different.
“Perhaps because I have investigated various musical syndromes,” writes Dr Sacks, “and people often write to me about these… I have seen or corresponded with a dozen or more people whose hallucinations include – and sometimes consist exclusively of – musical notation.”
Sacks goes on to detail eight fascinating case studies of people who have reported experiencing hallucinations of musical notation, including:
It is striking that, of Dr Sacks’ eight case studies, seven were gifted musicians. Sacks comments, “This is perhaps a coincidence, but it makes one wonder whether there is something about musical scores that is radically different from verbal texts.” Musical scores are far more visually complex than standard (English) text, with not just a variety of notes, but also many symbols that indicate how the notes should be played.
Dr Sacks also says that he has a mild form of Charles Bonnet syndrome himself, in which he sees a variety of simple forms whenever he gazes at a blank surface. “When I recently returned to playing the piano and to studying scores minutely, I began to ‘see’ showers of flat signs along with the letters and runes on blank surfaces.”
Another striking feature of these hallucinations is that – like text hallucinations – they are generally unreadable. They can seem playable at first, but on closer inspection it transpires that the music is often nonsensical or impossible to play, such as an example reported in one of the case studies: a melody line three or more octaves above middle C, and so may have half a dozen or more ledger lines above the treble staff.
Usually, the early visual system analyses forms and sends the information it has extracted to higher areas, where it gains coherence and meaning. Normally, in the act of perception, the entire visual system is engaged. Paradoxically, according to Sacks, “one may have to study disorders of the visual system to see how complex perceptual and cognitive processes are analysed and delegated to different levels… and hallucinations of musical notation can provide a very rich field of study here.”
Scary Faces Terrify Woman with Unusual Condition
When the 67-year-old woman came to the hospital, she was deeply afraid of two things — the visions of odd-looking faces that appeared hovering before her, and that the hallucinations might mean she was losing her mind.
But this retired teacher wasn’t going crazy, and laboratory tests also ruled out two common culprits of hallucinations — infection and drug interactions.
"She was absolutely terrified by what she was seeing," said Dr. Bharat Kumar, an internal medicine resident at the University of Kentucky who treated the woman. In fact, the patient and her family were so concerned in the days before she came to the hospital, they asked a priest about performing an exorcism, Kumar said.
The woman drew a picture of what she saw. The faces had large teeth, eyes and ears, and a horizontally elongated shape, like a football.
That peculiar shape and the fact that the patient recognized that she was hallucinating (rather than believing the visions to be real) provided two important clues in making a diagnosis, Kumar said. He determined that the woman had condition called Charles Bonnet syndrome.
Patients with the syndrome may see small people and animals, bright moving shapes or distorted faces. These hallucinations are purely visual; no sounds accompany them.
In the woman’s case, the condition developed because she had macular degeneration. Tissue within the retinas of her eyes was deteriorating, and her ability to see was declining.
Charles Bonnet syndrome results from the absence of such sensory input to the brain. “When it expects sensory input and receives nothing, it often creates its own input,” Kumar explained.
The brain isn’t a sophisticated computer that processes information objectively and efficiently, he said. “It’s more of a wibbly-wobbly, messy-guessy ball of goo.”
There is no treatment for the condition, but in many cases the hallucinations stop happening as the brain becomes used to vision loss. Patients who are very frightened might be given anti-psychotic medications, but these drugs have serious side effects and aren’t appropriate for everyone.
The woman was grateful to receive her diagnosis and learn that she was not losing her mind, Kumar said. When he followed up with her three months later, she was still having the hallucinations, but they were happening less often.
A 2010 study showed that 10 to 40 percent of elderly patients with visual impairments may have Charles Bonnet syndrome.
Kumar had never before seen a patient with the condition, although he noted that it may occur more commonly than it is diagnosed. “Patients are often hesitant to say that they see things because they are afraid that they will be called crazy,” he said.
The case report was published online Feb. 25 in the journal Age and Aging.

Seeing Things? Hearing Things? Many of Us Do
are very startling and frightening: you suddenly see, or hear or smell something — something that is not there. Your immediate, bewildered feeling is, what is going on? Where is this coming from? The hallucination is convincingly real, produced by the same neural pathways as actual perception, and yet no one else seems to see it. And then you are forced to the conclusion that something — something unprecedented — is happening in your own brain or mind. Are you going insane, getting , having a ?
In other cultures, hallucinations have been regarded as gifts from the gods or the Muses, but in modern times they seem to carry an ominous significance in the public (and also the medical) mind, as portents of severe mental or neurological disorders. Having hallucinations is a fearful secret for many people — millions of people — never to be mentioned, hardly to be acknowledged to oneself, and yet far from uncommon. The vast majority are benign — and, indeed, in many circumstances, perfectly normal. Most of us have experienced them from time to time, during a or with the sensory monotony of a desert or empty road, or sometimes, seemingly, out of the blue.
Many of us, as we lie in bed with closed eyes, awaiting sleep, have so-called hypnagogic hallucinations — geometric patterns, or faces, sometimes landscapes. Such patterns or scenes may be almost too faint to notice, or they may be very elaborate, brilliantly colored and rapidly changing — people used to compare them to slide shows.