Visual hallucinations, not unlike dreams, have been shared by nearly every culture since antiquity. They have generally been associated with mental illness or hallucinogenic drugs or people such as sailors, polar explorers or prisoners who have spent a long time in isolated circumstances. They are, however, a common occurrence in people with impaired sight, particularly in the elderly, writes Dr. Stephen Doyle, Ophthalmologist at Manchester Royal Eye Hospital. Robert Teunisse, a psychiatrist at the University Hospital in Nijmegen, the Netherlands, tells in a recent article about a typical example. The elderly woman sitting in his office seemed sane enough, but the story she told was decidedly odd. About two and a half years earlier, she said, she'd begun having strange visions. The first time it happened, she was sitting quietly at home when she suddenly saw three or four two-inch-high, stovepipe-hat-wearing chimney sweeps parading in front of her, ladders in hand. "She was thinking, 'Well, I'm going crazy now,' " recalls Teunisse,. "But they didn't harm her, so she thought, 'What the heck, I'll try to catch me one.' But when she went near, they disappeared. So she knew it was some kind of optical trick." Her only medical problem of note was that she had poor sight due to macular degeneration.

The woman wasn't crazy. Unlike most mentally ill people who hallucinate, she was perfectly aware that the images she saw were not real. She had Charles Bonnet Syndrome, first described by this Swiss naturalist in 1760 on account of the visual hallucinations experienced by his grandfather. He described them as "amusing and magical visions, coexisting with reason". It is now defined as "a persistent recurrent visual hallucinatory phenomenon of a pleasant nature, with a clear state of consciousness, compelling, but seen by the patient as unreal. It is associated with ocular pathology, and tends to be remarkably crisp and detailed, and at times Lilliputian" It is characterised by complex hallucinations in people who are psychologically normal.

Why these hallucinations should occur is not known, but the best explanation so far is that of the "dual-input model". According to this paradigm, both external sensory input and internal memory input contribute to image formation and a sustained level of sensory input is required to inhibit the emergence of pre-formed images from within the brain. If sensory input falls below a given threshold, a release of previously recorded perceptions into awareness may occur. A similar sort of thing may happen with dreaming. Patients with Charles Bonnet Syndrome show distinct similarities in the images they perceive. To begin, the bulk of the hallucinations are pleasant, or at least non-threatening. Often they are quite familiar forms and seem to occur with limited external stimuli when the patient is less active. They are generally of short duration and tend to abate spontaneously, although in some people they may occur every day for months.

If one talks to elderly people with poor sight, it is surprising to find out how common this problem is. A recent study of 500 elderly people with poor sight found 12% to have these visual hallucinations. There are not usually mentioned by the sufferers for fear of being thought mad and being "taken off to a mental institution"

Maggie Harrison is a Patient Support Officer for Henshaw’s Society for the Blond, a registered charity providing a wide range of services across northern England and North Wales. Maggie is based at Manchester Royal Eye Hospital where she provides advice, information and support for patients and their families, often at the distressing time of diagnosis. She deals mainly with elderly people and has met a significant number of patients suffering visual hallucinations.

"People are sometimes truly frightened by what the experience", says Maggie. "They’re also afraid of being misunderstood and they’re confused by knowing the hallucinations are not real, yet feeling that they are. One woman kept seeing very large spiders crawling across her living room floor. Although she knew the spiders were not really there, she could not be certain about it and felt unable to invite her friends to the house".

Maggie has found that by introducing the subject of hallucinations into her conversations with patients, they are far more likely to talk about their experiences. Pre-empting the discussion in this way has revealed a far higher number of people experiencing visions that had previously been thought. For example, in a two week period of active questioning, Maggie met four people suffering from visual hallucinations, yet in the four years since the Patient Support Service was launched in 1993, Maggie had met only nine out of 2500 patients who spontaneously admitted to having hallucinatory experiences.

She says; "For many people, hallucinations are an additional worry at a time when they are only just coming to terms with their sight loss. Many people keep quiet about it because they fear they will be thought mad and will have more restrictions imposed on them in addition to their lack of independence" Yet taking to someone can relieve patients’ anguish. Maggie recalls the case of a woman who was absolutely terrified by her hallucinations. When she finally talked about it, the transformation was remarkable; she felt reassured that she was not losing her mind and regained her confidence in the future.

Maggie believes that medical professionals need to be made aware of how common visual hallucinations are among patient with impaired sight. Often, these visions are dismissed as a figment of the imagination. Patients’ distress may go unrecognised, or worse, be belittled. They may be wrongly referred to psychologists or geriatric psychiatrists, or prescribed tranquillisers because no-one has made the connection with their visual impairment. Misunderstandings of this sort can seriously impede a patient’s progress towards independent living and makes coming to terms with their sight loss more difficult.

Charles Bonnet syndrome is more common in older people with a high level of education or a creative profession. Although Charles Bonnet Syndrome is mainly a problem of the elderly, it has been described in children who have lost their sight early in life and included "faces, animals, balls and buildings" Doctors should help families anticipate symptoms and provide reassurance that this can be a "normal" response to vision loss.

Source: http://www.northerneye.co.uk

Welcome to a New Reality

"People afflicted with certain eye diseases give similar reports of beings from parallel universes."

People afflicted with Charles Bonnet Syndrome see beings from another world. Many scientists would call these beings hallucinations. Others call this syndrome a portal to a parallel reality.

People with Charles Bonnet Syndrome (or "Bonnet-people") are otherwise mentally sound. The beings appear when the Bonnet-people's vision deteriorates as a result of eye diseases such as age-related macular degeneration -- or when patients have had both eyes removed. Charles Bonnet Syndrome is more common in older people with a high level of education.

Bonnet-people report that they see apparitions resembling distorted faces, costumed figures, ghosts, and little people.

Most Bonnet-people see beings wearing hats. For example, one very sane woman was sitting quietly at home when she suddenly saw several two-inch-high, stovepipe-hat-wearing chimney sweeps parading in front of her. (ref 2.) She tried to catch one, but could not. Her only medical problem was that she had poor sight due to macular degeneration.

One patient described how a friend working in front of a tall privet hedge suddenly disappeared, as if he had suddenly put on a cloak of invisibility. "There was an orange peaked cap bobbing around in front of the hedge and floating in space by its own devices." (ref. 1)

Fifty percent of Bonnet-people see a disembodied or distorted face of a stranger with staring eyes and prominent teeth. Sometimes the strangers are seen only in an outline or cartoon-type form, which reminds me of the images seen by people taking the psychedelic drug DMT. The faces "are often described as being grotesque, or like gargoyles". (ref. 1)

Some of the beings have blank eye sockets. (This image is also reported by people using the hallucinogen Special K. One person e-mailed me and told me that while under the influence, everything was normal except that people in the room had no eye sockets, just a black void, and he saw light being sucked into the void from around the periphery of the eyeballs.)

Bonnet-people also see serene landscapes and vortices. Many Bonnet-people will see entire new worlds, such as landscapes or groups of people, which are either life size or tiny (ref 3.) Perhaps when vision deteriorates, the brain's visual cortex is starved for information, and the brain is free to access parallel realities.

Sometimes the imagery can be complex, almost comical, like two miniature policemen guiding a midget villain to a tiny prison van, ghostly (translucent figures floating in the hallway), people wearing one big flower on their heads), as well as beautiful (a shining angel, wonderful group of flowers). (ref 4.)

A Swiss philosopher named Charles Bonnet first described this condition in the 1760 when he noticed his grandfather, who was blinded by cataracts, describing birds and buildings that Bonnet could not see. (ref. 3)

If you liked this story, see: Capgras Syndrome Opens Portal to New Universe and DMT, Moses, and God

Further Reading on Charles Bonnet Syndrome

1. Roger Highfield, "Ghosts and witches on the brain"

2. Dr Stephen J Doyle and Maggie Harrison, "Lost in Lilliput"

3. Royal National Institute of the Blind on Bonnet Syndrome

4. Robert J Teunisse, Johan R Cruysberg, Willibrord H Hoefnagels, André L Verbeek, Frans G Zitman, "Visual hallucinations in psychologically normal people: Charles Bonnet's syndrome"

Judging from what I know about your interests, you may also enjoy this Reality Carnival story: "DMT, Moses, and the Quest for Transcendence".

Source: https://sprott.physics.wisc.edu/pickover/pc/bonnet.html

Charles Bonnet syndrome refers to the visual hallucinations caused by the brain’s adjustment to significant vision loss. It occurs most often among the elderly who are more likely than any other age group to have eye conditions that affect sight, such as age-related macular degeneration. Estimates vary, but it is thought that about one person in every two with vision loss may experience hallucinations, which means Charles Bonnet syndrome is very common. Despite this, most people are not aware of this condition.

Research suggests that many people who suffer from Charles Bonnet syndrome do not consult their doctor out of fear and embarrassment, as hallucinations are associated with mental illness. In most cases, the hallucinations go away as the brain adapts.

Causes of Charles Bonnet syndrome

The underlying mechanism of Charles Bonnet syndrome is not understood. Doctors know that vision loss triggers the visual hallucinations. It is not clear how the brain stores visual information, but we know that visual information from the eyes stops the brain from creating its own images. Perhaps the loss of visual information from the eyes allows the brain to ‘play’ with its stored picture library.

Symptoms of Charles Bonnet syndrome

The signs and symptoms of Charles Bonnet syndrome include:

• Significant vision loss

• Visual hallucinations

• No control over the hallucinations

• A realisation that the hallucinations aren’t real.

• Types of hallucinations in Charles Bonnet syndrome

Generally, the hallucinations tend to occur when the person is alone, quiet and in a familiar environment, for example, when lying awake in bed. The two types of visual hallucination most common to Charles Bonnet syndrome include:

• Simple – such as patterns and lines, for example, the person may see brickwork images, netting or mosaics

• Complicated – such as seeing people, buildings, landscapes or places. Complicated hallucinations are more likely to occur in people with severe vision loss.

Features of Charles Bonnet hallucinations

The features of hallucinations can vary widely from one episode to the next and from one person to the next. For example, the images may be:

• colour, or black and white

• static like a photograph, or moving like an event in real life

• life-sized, or reduced in size

• realistic (such as animals from the real world), or fantastic (such as mythological monsters)

• brief (they continue for a few minutes), or lengthy (they persist for a few hours)

• enjoyable like a pleasant dream, or frightening like a nightmare

• meaningless and random, or featuring familiar people or familiar places

• different every time, or a person may see the same items in every hallucination.

Complications of Charles Bonnet syndrome

A person with Charles Bonnet syndrome has no control over their hallucinations. They may cause issues in their everyday life because:

• The hallucinations overlay images of the real world, so the person may have trouble negotiating everyday tasks, such as walking through an unfamiliar environment.

• The person may not know at first whether the image is real or imagined, which can be frightening if they are seeing, for example, a stranger in the house.

• Seeing things that aren’t there is distressing, even if the images are pleasant.

• The person may fear they are going mad or exhibiting signs of dementia.

Other causes of visual hallucinations

Visual hallucinations may have causes other than Charles Bonnet syndrome, including:

• dementia

• some forms of mental illness

• stroke

• oestrogen replacement therapy

• parkinson’s disease

• psychotic drugs such as cannabis

• blindness in one side of the visual field (hemianopia)

• pituitary tumour

• short-term after-effects of cataract surgery

• kidney dialysis that includes the hormone erythropoietin.

Diagnosis of Charles Bonnet syndrome

Diagnosis of Charles Bonnet syndrome may include:

• your medical history

• a physical examination

• an eye examination

• medical tests to rule out other causes of visual hallucinations.

Treatment for Charles Bonnet syndrome

In most cases, Charles Bonnet syndrome resolves itself after about 12 to 18 months without treatment. It is a good idea to find out everything you can about Charles Bonnet syndrome. Understanding the condition can help to reduce feelings of anxiety and helplessness. Sometimes the hallucinations don’t go away, but there is no medical cure. Depending on the severity of the condition, treatment may include:

• Medical advice – talking it over with a doctor or counsellor can be helpful.

• Vision therapy – low-vision rehabilitation may help to ease symptoms.

• Moving your eyes – some people report that the hallucinations dissipate if they move their gaze from side to side or up and down.

• Changing the variables – to ‘turn off’ the hallucination, you could try altering the environment or setting that you are in. For example: if it’s dark, turn on the light, or if you’re standing up, sit down. If your eyes are open, shut them, or if you’re in one room, go to another room.

Source: https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/eyes-charles-bonnet-syndrome

Neurologist and author Oliver Sacks brings our attention to Charles Bonnet syndrome during a presentation at the TED* Conference.

Neurologist and author Oliver Sacks brings our attention to Charles Bonnet syndrome during a presentation at the TED* Conference. He describes the experiences of his patients in heartwarming detail and walks us through the biology of this under-reported hallucination phenomenon that is experienced by some patients that have visual impairment.

Transcript

Dr. Oliver Sacks: We see with the eyes, but we see with the brain as well. And seeing with the brain is often called imagination. And we are familiar with the landscapes of our own imagination, our inscapes. We've lived with them all our lives. But there are also hallucinations as well, and hallucinations are completely different. They don't seem to be of our creation. They don't seem to be under our control. They seem to come from the outside, and to mimic perception.

So I am going to be talking about hallucinations, and a particular sort of visual hallucination which I see among my patients. A few months ago, I got a phone call from a nursing home where I work. They told me that one of their residents, an old lady in her 90s, was seeing things, and they wondered if she'd gone bonkers or, because she was an old lady, whether she'd had a stroke, or whether she had Alzheimer's. And so they asked me if I would come and see Rosalie, the old lady. I went in to see her. It was evident straight away that she was perfectly sane and lucid and of good intelligence, but she'd been very startled and very bewildered, because she'd been seeing things. And she told me -- the nurses hadn't mentioned this -- that she was blind, that she had been completely blind from macular degeneration for five years. But now, for the last few days, she'd been seeing things. So I said, "What sort of things?" And she said, "People in Eastern dress, in drapes, walking up and down stairs. A man who turns towards me and smiles. But he has huge teeth on one side of his mouth. Animals too. I see a white building. It's snowing, a soft snow. I see this horse with a harness, dragging the snow away. Then, one night, the scene changes. I see cats and dogs walking towards me. They come to a certain point and then stop. Then it changes again. I see a lot of children. They are walking up and down stairs. They wear bright colors, rose and blue, like Eastern dress." Sometimes, she said, before the people come on, she may hallucinate pink and blue squares on the floor, which seem to go up to the ceiling. I said, "Is this like a dream?" And she said, "No, it's not like a dream. It's like a movie." She said, "It's got color. It's got motion. But it's completely silent, like a silent movie." And she said that it's a rather boring movie. She said, "All these people with Eastern dress, walking up and down, very repetitive, very limited."

(Laughter)

And she has a sense of humor. She knew it was a hallucination. But she was frightened. She'd lived 95 years and she'd never had a hallucination before. She said that the hallucinations were unrelated to anything she was thinking or feeling or doing, that they seemed to come on by themselves, or disappear. She had no control over them. She said she didn't recognize any of the people or places in the hallucinations. And none of the people or the animals, well, they all seemed oblivious of her. And she didn't know what was going on. She wondered if she was going mad or losing her mind. Well, I examined her carefully. She was a bright old lady, perfectly sane. She had no medical problems. She wasn't on any medications which could produce hallucinations. But she was blind. And I then said to her, "I think I know what you have." I said, "There is a special form of visual hallucination which may go with deteriorating vision or blindness. This was originally described," I said, "right back in the 18th century, by a man called Charles Bonnet. And you have Charles Bonnet syndrome. There is nothing wrong with your brain. There is nothing wrong with your mind. You have Charles Bonnet syndrome." And she was very relieved at this, that there was nothing seriously the matter, and also rather curious. She said, "Who is this Charles Bonnet?" She said, "Did he have them himself?" And she said, "Tell all the nurses that I have Charles Bonnet syndrome."

(Laughter)

"I'm not crazy. I'm not demented. I have Charles Bonnet syndrome." Well, so I did tell the nurses. Now this, for me, is a common situation. I work in old-age homes, largely. I see a lot of elderly people who are hearing impaired or visually impaired. About 10 percent of the hearing impaired people get musical hallucinations. And about 10 percent of the visually impaired people get visual hallucinations. You don't have to be completely blind, only sufficiently impaired. Now with the original description in the 18th century, Charles Bonnet did not have them. His grandfather had these hallucinations. His grandfather was a magistrate, an elderly man. He'd had cataract surgery. His vision was pretty poor. And in 1759, he described to his grandson various things he was seeing. The first thing he said was he saw a handkerchief in midair. It was a large blue handkerchief with four orange circles. And he knew it was a hallucination. You don't have handkerchiefs in midair. And then he saw a big wheel in midair. But sometimes he wasn't sure whether he was hallucinating or not, because the hallucinations would fit in the context of the visions. So on one occasion, when his granddaughters were visiting them, he said, "And who are these handsome young men with you?" And they said, "Alas, Grandpapa, there are no handsome young men." And then the handsome young men disappeared. It's typical of these hallucinations that they may come in a flash and disappear in a flash. They don't usually fade in and out. They are rather sudden, and they change suddenly. Charles Lullin, the grandfather, saw hundreds of different figures, different landscapes of all sorts. On one occasion, he saw a man in a bathrobe smoking a pipe, and realized it was himself. That was the only figure he recognized. On one occasion when he was walking in the streets of Paris, he saw -- this was real -- a scaffolding. But when he got back home, he saw a miniature of the scaffolding six inches high, on his study table. This repetition of perception is sometimes called Palinopsia.

With him and with Rosalie, what seems to be going on -- and Rosalie said, "What's going on?" -- and I said that as you lose vision, as the visual parts of the brain are no longer getting any input, they become hyperactive and excitable, and they start to fire spontaneously. And you start to see things. The things you see can be very complicated indeed. With another patient of mine, who, also had some vision, the vision she had could be disturbing. On one occasion, she said she saw a man in a striped shirt in a restaurant. And he turned around. And then he divided into six figures in striped shirts, who started walking towards her. And then the six figures came together again, like a concertina. Once, when she was driving, or rather, her husband was driving, the road divided into four and she felt herself going simultaneously up four roads. She had very mobile hallucinations as well. A lot of them had to do with a car. Sometimes she would see a teenage boy sitting on the hood of the car. He was very tenacious and he moved rather gracefully when the car turned. And then when they came to a stop, the boy would do a sudden vertical takeoff, 100 foot in the air, and then disappear. Another patient of mine had a different sort of hallucination. This was a woman who didn't have trouble with her eyes, but the visual parts of her brain, a little tumor in the occipital cortex. And, above all, she would see cartoons. These cartoons would be transparent and would cover half the visual field, like a screen. And especially she saw cartoons of Kermit the Frog.

(Laughter)

Now, I don't watch Sesame Street, but she made a point of saying, "Why Kermit?" she said, "Kermit the Frog means nothing to me. You know, I was wondering about Freudian determinants. Why Kermit? Kermit the Frog means nothing to me." She didn't mind the cartoons too much. But what did disturb her was she got very persistent images or hallucinations of faces and as with Rosalie, the faces were often deformed, with very large teeth or very large eyes. And these frightened her. Well, what is going on with these people? As a physician, I have to try and define what's going on, and to reassure people, especially to reassure them that they're not going insane. Something like 10 percent, as I said, of visually impaired people get these. But no more than one percent of the people acknowledge them, because they are afraid they will be seen as insane or something. And if they do mention them to their own doctors they may be misdiagnosed. In particular, the notion is that if you see things or hear things, you're going mad, but the psychotic hallucinations are quite different. Psychotic hallucinations, whether they are visual or vocal, they address you. They accuse you. They seduce you. They humiliate you. They jeer at you. You interact with them. There is none of this quality of being addressed with these Charles Bonnet hallucinations. There is a film. You're seeing a film which has nothing to do with you, or that's how people think about it. There is also a rare thing called temporal lobe epilepsy, and sometimes, if one has this, one may feel oneself transported back to a time and place in the past. You're at a particular road junction. You smell chestnuts roasting. You hear the traffic. All the senses are involved. And you're waiting for your girl. And it's that Tuesday evening back in 1982. And the temporal lobe hallucinations are all-sense hallucinations, full of feeling, full of familiarity, located in space and time, coherent, dramatic.

The Charles Bonnet ones are quite different. So in the Charles Bonnet hallucinations, you have all sorts of levels, from the geometrical hallucinations --the pink and blue squares the woman had -- up to quite elaborate hallucinations with figures and especially faces. Faces, and sometimes deformed faces, are the single commonest thing in these hallucinations. And one of the second commonest is cartoons. So, what is going on? Fascinatingly, in the last few years, it's been possible to do functional brain imagery, to do fMRI on people as they are hallucinating. And in fact, to find that different parts of the visual brain are activated as they are hallucinating. When people have these simple geometrical hallucinations, the primary visual cortex is activated. This is the part of the brain which perceives edges and patterns. You don't form images with your primary visual cortex. When images are formed, a higher part of the visual cortex is involved in the temporal lobe. And in particular, one area of the temporal lobe is called the fusiform gyrus. And it's known that if people have damage in the fusiform gyrus, they maybe lose the ability to recognize faces. But if there is an abnormal activity in the fusiform gyrus, they may hallucinate faces, and this is exactly what you find in some of these people. There is an area in the anterior part of this gyrus where teeth and eyes are represented, and that part of the gyrus is activated when people get the deformed hallucinations. There is another part of the brain which is especially activated when one sees cartoons. It's activated when one recognizes cartoons, when one draws cartoons, and when one hallucinates them. It's very interesting that that should be specific. There are other parts of the brain which are specifically involved with the recognition and hallucination of buildings and landscapes. Around 1970, it was found that there were not only parts of the brain, but particular cells. "Face cells" were discovered around 1970. And now we know that there are hundreds of other sorts of cells, which can be very, very specific. So you may not only have "car" cells, you may have "Aston Martin" cells.

(Laughter)

I saw an Aston Martin this morning. I had to bring it in. And now it's in there somewhere. (Laughter)

Now, at this level, in what's called the infratemporal cortex, there are only visual images, or figments or fragments. It's only at higher levels that the other senses join in and there are connections with memory and emotion. And in the Charles Bonnet syndrome, you don't go to those higher levels. You're in these levels of inferior visual cortex where you have thousands and tens of thousands and millions of images, or figments, or fragmentary figments, all neurally encoded in particular cells or small clusters of cells. Normally these are all part of the integrated stream of perception, or imagination, and one is not conscious of them. It is only if one is visually impaired or blind that the process is interrupted. And instead of getting normal perception, you're getting an anarchic, convulsive stimulation, or release, of all of these visual cells in the Infratemporal cortex. So, suddenly you see a face. Suddenly you see a car. Suddenly this, and suddenly that. The mind does its best to organize and to give some sort of coherence to this, but not terribly successfully. When these were first described, it was thought that they could be interpreted like dreams. But in fact people say, "I don't recognize the people. I can't form any associations." "Kermit means nothing to me." You don't get anywhere thinking of them as dreams. Well, I've more or less said what I wanted. I think I just want to recapitulate and say this is common. Think of the number of blind people. There must be hundreds of thousands of blind people who have these hallucinations, but are too scared to mention them. So this sort of thing needs to be brought into notice, for patients, for doctors, for the public.

Finally, I think they are infinitely interesting and valuable, for giving one some insight as to how the brain works. Charles Bonnet said, 250 years ago -- he wondered how, thinking these hallucinations, how, as he put it, the theater of the mind could be generated by the machinery of the brain. Now, 250 years later, I think we're beginning to glimpse how this is done. Thanks very much.

(Applause)

Chris Anderson: That was superb. Thank you so much. You speak about these things with so much insight and empathy for your patients. Have you yourself experienced any of the syndromes you write about?

Dr. Sacks: I was afraid you'd ask that.

(Laughter)

Well, yeah, a lot of them. And actually I'm a little visually impaired myself. I'm blind in one eye, and not terribly good in the other. And I see the geometrical hallucinations. But they stop there.

CA: And they don't disturb you? Because you understand what's doing it, it doesn't make you worried?

Dr. Sacks: Well they don't disturb me any more than my tinnitus, which I ignore. They occasionally interest me, and I have many pictures of them in my notebooks. I've gone and had an fMRI myself, to see how my visual cortex is taking over. And when I see all these hexagons and complex things, which I also have, in visual migraine, I wonder whether everyone sees things like this, and whether things like cave art or ornamental art may have been derived from them a bit.

CA: That was an utterly, utterly fascinating talk. Thank you so much for sharing.

Dr. Sacks: Thank you. Thank you.

Source: https://www.brightfocus.org/macular/video/dr-oliver-sacks-talks-about-charles-bonnet-syndrome

Ghostly figures, hideous distorted faces and abstract patterns are just some of the disturbing hallucinations sufferers of this little known condition experience

Ghostly figures that loom out of the darkness, hideous distorted faces and abstract patterns that appear from nowhere – this is how the world appears to some sufferers of Charles Bonnet Syndrome. The little understood syndrome was first identified around 250 years ago by Swiss Philosopher and natural science enthusiast Charles Bonnet. Charles observed that his grandfather started to experience hallucinations after he developed cataracts. But despite the visions, Charles’ grandfather still seemed cognitively alert and did not appear to be suffering from other symptoms commonly associated with mental health problems.

The term Charles Bonnet Syndrome has since been used to describe visual hallucinations associated with sight loss. For thousands of people living with sight loss across the UK, hallucinations form the backdrop to everyday life. And while many are able to ignore the images, for others the syndrome can make them fear for their mental wellbeing. It was at a meeting with an adviser at local sight loss charity Galloway’s, that a Fulwood grandmother first raised her concerns about troubling visions she had been having in the dead of night.

Linda McCann first developed Glaucoma 30 years ago. But it wasn’t until her eyesight deteriorated even further, following a diagnosis of macular degeneration and cataracts, that she first encountered strange visions. The 68-year-old former physiotherapist’s assistant said: “I used to wake up at night and see people in the corner of my bedroom. I was absolutely terrified. “Sometimes I would see an elderly man, sometimes an elderly woman. The lady would wear a long cape which covered her head and reached down to the floor. They were so real and very scary - they looked exactly like you would expect a ghost to look. “They would start at the bottom of my bed and glide towards me. When they reached me they would stop. I tried to reach out and touch them but there was nothing to feel. It was very frightening, I thought I was losing my mind. I didn’t really want to tell anyone about it.

“It was through help I received at Galloway’s that I learnt about Charles Bonnet Syndrome. I’d never heard of it before. Now I know it’s just my brain trying to make sense of missing information and although it’s disturbing, it’s certainly not frightening anymore. “Thankfully, I haven’t had any visions for a while now, but if it returns, I’ll know exactly what it is.”

Experts say that the hallucinations often appear after a deterioration in eyesight but can also appear years after sight loss first began. Charles Bonnet expert, Dr Dominic Ffytche who is a Reader in Visual Psychiatry at King’s College London said: “Charles Bonnet Syndrome is a term used to describe visual hallucinations caused by sight loss. “Although the majority of people who experience this syndrome do not feel that the hallucinations cause a problem, around one-third find the condition distressing. It is those people that need to be reached. “A survey conducted six years ago found that there was very little awareness among people with sight loss and health care professionals.

“We hope that this is starting to change following campaigns undertaken by Esme’s Umbrella, as well as through on the ground support by sight loss charities such as Galloway’s. If you suspect you have the condition and are finding it distressing, it is important to seek medical help. “A doctor will be able to rule out other causes as well as perhaps change medication which may be exacerbating the problem.”

Dennis Cushing, 93, first developed Charles Bonnet Syndrome 15 years ago following a diagnosis of macular degeneration. The great-grandfather from Preston said that he started to see patterns and shapes after his eye-sight deteriorated which then developed into more detailed visions. Dennis said: “Two particular images started to appear that became part and parcel of my Charles Bonnet Syndrome. “One was a Japanese Admiral who appeared in full military dress and long coat. He would walk towards me while at the same time moving his head backwards and forwards. His mouth was moving as though he was talking, but he never made a sound.

“He always wore a long coat, and it was so detailed, I could see his legs moving beneath the material as he walked towards me. I used to tell him to buzz off. I also used to see the most evil looking woman you could imagine. “I called her Mrs Fernandipants. I only ever saw her face and shoulders and she always wore a beige hooded anorak. “As she came towards me, her face would distort in a horrendous way. Her nose would lengthen and sharpen and her face just looked evil. Thankfully, I have never really been too troubled by the images. I realised early on that they were a consequence of my eye-sight issues. “But I can definitely understand how some people could become upset. I would always say to those people to go and seek help. Don’t suffer in silence.”

Recent research published by the Macular Society revealed that up to 50% of people suffering from macular disease experience visual hallucinations. Yet despite its frequency, Charles Bonnet Syndrome is often not considered when assessing patients who report visual hallucinations.

Jenny Lloyd, Head of Services at Galloway’s, said: “Too many people are still suffering from the more negative effects of Charles Bonnet Syndrome in silence. We have heard of stories where people wake up every morning to trains rushing at their heads, ghostly figures that tower over them peering at their faces, as well as more benign hallucinations such as flowers, butterflies and birds.

“It is not uncommon for visually impaired people to wait years before they seek help, as they can be fearful that the hallucinations signal the onset of dementia, when in fact it is simply a symptom of their sight loss. “Health care professionals do not always consider the possibility that the hallucinations may be a consequence of a visual problem, particularly among older patients. We would ask that anyone who is treating or caring for a person who is living with sight loss asks about hallucinations. “Sometimes simply knowing that the hallucination is a natural consequence of a deterioration in eyesight is enough to reduce the symptoms.” Galloway’s has been helping to support people living with the effects of Charles Bonnet Syndrome by providing counselling and support groups.

To visit Galloway's Charles Bonnet Syndrome support groups or for more information about helping Galloway’s, call 01772 744 148 or visitwww.galloways.org.uk

Factfile

* Between 16,000 and 100,000 experience a distressing form of CBS in the UK.

* 45% of people with CBS may experience hallucinations for four years or more.

* Sixty-seven per cent of patients with CBS had not heard of CBS when their symptoms started.

* Around a half of these patients discussed it with a medical professional but around a third of the professionals consulted were unfamiliar with CBS.

Source:https://www.lep.co.uk/education/ghostly-figures-hideous-distorted-faces-and-abstract-patterns-are-just-some-of-the-disturbing-hallucinations-sufferers-of-this-little-known-condition-experience-214774

January 12, 1999

A patient hands me this note:

I am the last witness to creation. At least, that’s how I’ve felt since I lost my sight. I can create marvelous images in my mind, invisible to the eyes of others. Sometimes the images come from a place so remote from my will that they’re no longer mine. And I, once a scientist and a rationalist, have learned to be fearful of my own self.

Alejandro is a biologist. Three years ago, he began to vomit and suffer from headaches. His wife took him to a hospital, and a cerebral tumor was found. He underwent surgery in Mexico City. The scientific name for his illness is both precise and sinister: craniopharyngioma. The patient’s wife cares for him tenderly, but he has not worked since his diagnosis. Although surgery saved his life, the tumor destroyed his optic nerves, and it will grow again. There is no way of predicting exactly when it will be necessary to intervene again. Something unexpected, however, happens every day.

“I see boats and aerial battles. But I prefer seeing rare fish, seahorses, and exotic birds,” he tells me. My attention is drawn to the verb, “to see,” since my patient is in fact blind.

Before becoming ill, I painted every now and then. I took art lessons and visited as many museums as possible. Some 20 years ago, I went to the Vatican. Even now, I can see that seigniorial city, vividly, and revel in its architecture. I turn my attention to an altarpiece, carved in wood, but then I feel a tremendous temptation to make the altarpiece even more intricate. With enormous effort, I manage to gradually change the details of the altarpiece. I can recreate the entire structure of the Vatican. Sometimes I need many days to get it right.

January 13, 1999

I’ve dreamed that I embark with my friends on an excursion into the woods. I get lost and arrive at a lake. I climb a tree to leap over the water, but I find myself in an uncertain position. I’m unable to climb down, but I can’t continue climbing higher because the branches aren’t strong enough. I direct my sight to the lake: I see very large fish, primitive sharks, and manta rays. I fall and I wake up, but I can still see the creatures of my dream—the fish, the sharks, the manta ray—floating in the air, while I walk to the bathroom or the kitchen. Yet once I am awake, I know they are imaginary. This vision persists for an hour of wakefulness, beyond my control. For a while it’s amusing, but if it lasts too long it becomes unbearable.

January 14, 1999

I received a call from the neurosurgery department. Alejandro began screaming for help. A nurse found that his pulse was elevated; he was drenched with perspiration and was panting. The EEG study turned out to be normal. By the time I met him, he tried to laugh the matter off.

“I got scared by one of my visions.”

“But you often control them, isn’t that right?”

Almost always. I don’t know why, sometimes I feel an urge to shout or to flee, as if there were no air in the room… then I lose control over my visions. I see my grandmother, just the way I remember her when she died. I could still see in those days. Watching her in such a fragile situation hurt me very much. When the feelings of terror come, my agonizing grandmother may appear with great vividness. I have an urge to run away. But all around me, there are hundreds of hospital beds, and in every bed, I see my dying grandmother. Whenever my visions become uncontrollable, I use a trick: casing or framing the nightmarish images as if putting them on stage, or setting them on a theatrical dais, and next I invent some enormous curtains. I gradually bring the scene to a close by drawing in the curtains. If I draw them in too quickly, the trick never works. But if I do it gradually and try to relax, the nightmare vanishes, slowly, behind the curtain. Occasionally this trick is of no use, and no matter how slowly I draw in the curtains, my anguishing grandmother remains there, suspended.

January 18, 1999

I speak with my superior about this case of Charles Bonnet syndrome (1–3). Impatiently, he prescribes an antipsychotic medication. I raise the matter with Alejandro, but he considers the suppression of his images to be an act of barbarism. I cannot help but agree, in this instance. Alejandro needs the playful experience that renews his consciousness in the form of moldable hallucinations, often marvelous, sometimes terrifying. Fortunately, we have devised a pharmacological treatment for his anxiety states. Additionally, we agree that if he can learn to maintain a modicum of control over the emotional background, he might also gain control over the origin of the images and their phenomenology. A psychotherapeutic approach will be necessary to achieve this.

I guess Alejandro’s visual culture and former practice in plastic arts helped him to expand his capacities of visual working memory: this enables him to retain hallucinatory images for long periods and to transform these images, slowly, as works of art. Should I question the notion of hallucinatory states and think instead of a vivid imagination? However, salient emotional states may disrupt the patient’s executive control, and the images formed under such emotional score are involuntary, regarding both content and mechanism. Perhaps we agree at this point to call them hallucinations, once again. The introspection has started for both of us: Alejandro will try to learn to modulate the emotional source of his imagination. Myself, I am still searching for a scientific knowledge of subjectivity in the context of neurological disease: what are the boundaries between artistic imagination, reminiscence, dreams, and hallucination? How do we form a sense of agency regarding our own mental images?

From the National Institute of Neurology and Neurosurgery, Mexico City, Mexico (Ramírez-Bermúdez).

Send correspondence to Dr. Ramírez-Bermúdez (jesusramirezb@yahoo.com.mx).

Translated by Eduardo Jiménez Mayo.

The author reports no financial relationships with commercial interests.

References

1 Berrios GE, Brook P: The Charles Bonnet syndrome and the problem of visual perceptual disorders in the elderly. Age Ageing 1982; 11:17–23Crossref, Medline, Google Scholar

2 Teunisse RJ, Cruysberg J, Verbeek A, et al.: The Charles Bonnet syndrome: a large prospective study in The Netherlands: a study of the prevalence of the Charles Bonnet syndrome and associated factors in 500 patients attending the University Department of Ophthalmology at Nijmegen. Br J Psychiatry 1995; 166:254Crossref, Medline, Google Scholar

3 Yoldi-Negrete M, Ramírez-Bermúdez J, Ruiz-Chow A, et al.: Visual hallucinations in sensory deprived patients: Charles Bonnet syndrome? Salud Mental 2015; 38:217–224Crossref, Google Scholar

Source: https://neuro.psychiatryonline.org/doi/10.1176/appi.neuropsych.18080181

It's one thing for medical and health care professionals to describe the Charles Bonnet syndrome experience. It's quite another for those actually having to live with this condition on a daily basis. This area is devoted to the personal accounts of individuals who are living with Charles Bonnet syndrome.

It is also open to the perspectives of significant others (eg. carer, spouse, family member, friend) who are affected by a loved one's CBS journey. 

The principal aim is to share personal accounts of CBS for the benefit of others. For it is in sharing that we slowly begin to break down the wall of silence that has plagued the condition for far too long. The Foundation welcomes your stories: please send to info@charlesbonnetsyndrome.org

 Personal experiences of CBS

Mr L:   'Everywhere I look I see brickwork. When I look at my wife, her face is embedded in the bricks.'

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Mr B:   'I often see big cats like tigers and panthers...sometimes inside the house but also outdoors. The images used to be scary for me - especially as they would appear out of nowhere - but now I can at least account for them.'

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Ms T:      'When I first mentioned my CBS to my doctor, he said I should keep such thoughts to myself. It didn't help me at all. Made me withdraw more. I'd been seeing intense swirls of colour-like fireworks and more recently have begun to see these sort of spinning pyramids and cubes. They don't bother me too much now that I know what is causing it.'

Ms A:   'My name is Audrey, I am 86 years old, legally blind and I experience CBS and have done so for several years. As my eyesight deteriorated about 15 years ago, I noticed what I thought were specs of dust floating across my vision. My general practitioner (GP) said the condition was called floaters and flashes. Over time these floaters and flashes became other things such as miniature chessboards and wedding rings. These images were at first black and white, but as my sight worsened the images appeared in technicolour. On telling my GP he said, "Aren't you lucky!" I was rather shocked by his flippant retort.'

'Eventually I was diagnosed with age-related macular degeneration (ARMD). Sometime after this I was told about a talk being given on ARMD and on attending, I learned about the Charles Bonnet Syndrome. My mind was put at rest that I had a real condition and that I should not be afraid. Nowadays, having had hallucinations such as a huge snake and a Chinese lady in full Chinese costume, both of which disappeared when I blinked, I now know when I see things that aren't really there they are all part of the syndrome.'

'These days I have a carer who helps me, and like myself, spreads the word about CBS wherever we go and whenever the opportunity arises. We have informed a lot of people, including doctors, who otherwise did not know of this condition. Nowadays, knowing about and experiencing CBS I have learned to live with it and not be afraid.'

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Ms W:   'My walls are covered in these purple flowers. Even when I go outside, the lawns and pathways are a sea of these same purple flowers.'

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Mr L:   'My brain has a mind of its own. The Road Runner made me aware of this about three years ago. That pesky cartoon character who I never watched and never liked, popped up in my field of view on the right side. He wasn’t actually there. He didn’t exist, but my brain, reacting to my failing sight, may have thought I could do with a spot of entertainment with a stationary cartoon character. Why the Road Runner? Who knows? The only times I saw him was when I walked through the room where my kids were watching cartoons on TV. I always hoped that Wiley E. Coyote would catch him and… well, do whatever it was he wanted to do.

When he first appeared, my eyesight was beginning to fail. Since then, as my vision further declined, I began seeing images of people and things and as my years added up, my sight was subtracted from my faculties and my constant visitors multiplied, dividing my attention.

I am now regularly visited day and night by militia style men and women in lime green uniforms, sometimes armed, sometimes with white horses, and also by caricatures of ugly pirate heads. All sorts of people have joined me in the lounge room, eating dinner, at the shopping centre and even while trying to get to sleep. Sometimes there’s a group standing at the side of the TV, as if they’re watching what I can’t see. A small girl occasionally stands near my knee and looks up at me. When I smile and look down at her, she disappears. The worst of these visitors were the green-faced demons with sharp teeth.

If I didn’t know better, I could think I was going crazy. But what I now know is the cause of all these strange ‘hallucinations’ is the Charles Bonnet Syndrome (CBS). Charles Bonnet lived in Geneva over 250 years ago. He first became alerted to this syndrome that now bears his name, when his vision-impaired grandfather began seeing things that weren’t there. Now, two and a half centuries later, we do not know with any certainty, what is causing these strange visions. CBS usually affects people who become blind or vision-impaired late in life. I fit that category. I began losing my vision several years ago in my 70s. Now, that I am 81, and blind, these strangers have proliferated. They walk past me in a group, then look at me as if wondering who I am. They stand by the roadside even walking in front of our car and disappear as the car drives on. In most cases these uninvited visitors are a pleasant enough lot, smiling, often appearing interested in something that’s outside my field of vision. It is not always people. Sometimes a wall of pink bricks with blue grouting appears in my lounge room but luckily it disappears when I walk towards it.

So far, I have not found any way to get rid of them. But I know they are not a danger to me but where they come from, and who they are, is a mystery to me. It seems my brain is trying to make up for the lack of visible stimuli that it has received over the past eighty years. Is it now making up for having nothing to process, nothing in my vision? So far nobody recognisable has appeared in front of me except once, when my late mother’s face was looking sideways, and when I recognised her, she turned and looked at me and then disappeared.

There are probably more people with Charles Bonnet Syndrome than have been counted because some could be embarrassed to discuss it with anyone, even a doctor, fearing that they may be going insane or suffering from dementia. Strange as it seems, it doesn’t stop me doing whatever I want to do. I am left with eyes that can’t see what is around me, and a brain that sees what isn’t there. I don’t know whether to say I’m suffering from CBS or being entertained by it.'

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Ms K: 

In shadows' realm, where visions intertwine,

A curious condition, Charles Bonnet's design.

Within the mind's eye, a vivid display,

A symphony of specters, in vibrant array.

Oh, Charles Bonnet, a poet of perception,

Whose eyes behold a different dimension.

A realm of hallucinations, both strange and surreal,

Where the boundaries of reality gently repeal.

A world unseen by others, a private show,

Where phantom figures dance, come and go.

Majestic landscapes, painted with ethereal hue,

Delightful apparitions, ever-changing and new.

Yet, bittersweet is this gift, a double-edged blade,

For the mind's eye can both enchant and persuade.

Illusions and phantoms, they whisper and deceive,

As reality and fantasy begin to interweave.

The afflicted soul, a captive of this sight,

Navigates a labyrinth, alternating between light.

The beauty and terror, intertwined in their gaze,

A dance of wonder and anguish, through endless days.

But let us not forget, amidst this poetic haze,

The strength of those who face this perplexing maze.

For Charles Bonnet's syndrome, a challenge profound,

Yet resilience and courage in their hearts can be found.

Through support and understanding, let us stand,

Extend a tender hand and lend a helping hand.

For in unity and empathy, we shall find,

A world where Charles Bonnet's visions align.

So let us embrace the kaleidoscope of the mind,

For in the tapestry of perception, wonders we shall find.

And may the light of compassion forever shine,

On those touched by Charles Bonnet's design.

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Ms M:    'My name is Maria. I am 66 years old and in 1989 I first began to have sight problems. I was diagnosed with Retinitis Pigmentosa, which led me, by now, to absolute blindness for over ten years. 

On August 20, 2019 I thought I had undergone a miracle because I saw so many people around me... adults and children around me. I asked my husband who they were and he told me there was no one there. In the following days, trees, flowers and panoramic views were added and I thought I was crazy. 

So I first asked the primary care physician and the ophthalmologist who suggested I go to the neuropsychiatrist but between negative results from the CT and MRI scans I did not have a precise diagnosis as the doctors did not know how to explain what was causing my visions. In the meantime, through a search on the internet relating to hallucinations in the blind, I gathered information on CBS and through reading the testimonies of others living with the syndrome I could find many of my own symptoms.'

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Mr I:    'I am having 2 regular hallucinations. The first started when I saw three houses with red roofs across what appeared to be an English village green. The next iteration was a single house on the corner of a street and over surrounding houses again had red roofs and seemed to be suddenly built on brick. At this particular house on a corner somehow recall the first house I had lived in immediately after my first marriage.

Subsequently this has evolved into seemingly a large estate of these similar houses. Access to them on the left as I faced them is up a slight incline and then a gentle bend and then a straight road right across the front to hold of these houses and then a similar curve at the end that seems to go down a hill. This is a very pleasant vision and seems to be stable and peaceful and I don't think I ever see any people or peoples on the road. However, there have occasionally been a crowd of people walking down the inroad and seemingly mostly middle-aged and dressed for cool weather periods. I have even found that one or two of them remind me of specific people from the past.

As for these houses there may be 20 or 30 along this particular road. Yet there are obviously more setbacks through side streets the standard design itself one building containing two homes with one common central wall. Each home has a double garage and the front door and two other rooms on the ground level it also has three rooms on the second upstairs level.

The second vision: it's entirely different and it seems I am looking up a busy road, which absolutely has to be in London where I was born. I am 90 and moved to the States nearly 50 years ago (1974). The scenery is generally the same and on the left is a newsagent with the lovely different newspaper headlines on the walls indicating that they are available inside and these seemed to be from both England and other countries (eg. Le Monde). Looking down the street I would say I seem to see some sort of tower in the distance which I cannot identify and also a fork in the road. Once I first saw this I was sure it was England but was puzzled that there were no double Decker red buses which is typical of London streets. Almost immediately after that the street became full of these buses… and in addition, pedestrians were on the sidewalk and on the road in some cases. And there were also bicycles and other traffic on the road as well as the buses.

The scenery is almost always bathed in sunlight but I think I can persuade it to turn into night in which case lights start to appear in the buses and in the shops etcetera. Sometimes there are children but one day I said I would try and see if I could see my Australian shepherd dog Molly who actually died quite a few years ago. And almost instantly I saw her on her own weaving her way through the crowds and while I was glad to see her it then became depressing as I thought maybe she was looking for me.

In both cases above, the vision can vary in size and if it's on a wall or in mid-air it looks as though I'm basically looking through a window or a porthole. If the vision is say across the room some distance away from me, it will appear in an opening of about three feet wide and two feet high. However, if I take my eyes away from that and look down at something close say to my knee, I could see the same vision but miniaturized and with a much smaller opening. Now I have known some of the people walking along the streets sometimes come out my vision and 3 dimensionally appeared, in one case walking through a room where I was attending a meeting and of course I know this is a hallucination so it does not disturb me. In another instance, these people appear walking down the road and somebody is driving me and we seem to be driving through them. Nobody seems to be concerned about that either.

I have on occasions been sitting outside on a patio in front of the house and listening to some pleasant music when suddenly some of these people appeared and they were dancing to the music swing stepping left right to town.' 

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Ms D:    'In mid-January 2020, I was stopping for lunch with my husband. It is typically his manner to get out of the car and walk around to get me as I am somewhat handicapped. But on this particular day I got out of the car before him. I didn't see a concrete piece that was under the car and tripped over it falling forward onto concrete and watching my left eye literally explode. This led to an ambulance being called and major surgery followed. After several weeks, I had a visit with the surgeon and was told it was unlikely I would ever see again. As this was my second blind eye (first one lost to diabetic retinopathy six years before), this eye had been my hope of seeing again.'  

'I had to see the doctor every two weeks and he did ultrasounds of my eye, which were very painful. Once I told the doctor about things that I was seeing at night. Funny strange faces, scary people, furniture moving, and a dining room table full of people (when only my husband and I were present). His response, after rolling his eyes, was you're imagining that; that can't be happening.'

'After he left the room, one of his assistants whispered to me, you're having Charles Bonnet syndrome. The doctor doesn't acknowledge it, but look it up and she wrote it down on a piece of paper. We saw the doctor a bit later and I thanked him for having such a great assistant who was able to put a name to the visions I had been having. The doctor asked what she told me it was. I told him that she had indicated it was CBS. He indicated there was no such thing and that it was all a figment of my imagination.' 

'My husband started doing research about CBS. He read articles and descriptions and when we came upon the CBS Foundation, we were able to obtain a great deal of information and read stories about people that shared my experience. I started to realize that I was not abnormal but I did have the syndrome different than most. For example, I may be completely immersed in the hallucination with a 360 degree view. If I'm in a room I will see the entire room. If I'm at home in my simple modern cottage, it may change into a Victorian house. In the evenings we might be in a full opera house with all of our household furnishings in the house. If my husband grabs me to take me to dinner we may walk a few rows over and down to where our dining room table is sitting. And of course my bed at night is in the middle of some rows of people. Now mind you the people don't move or speak or get annoyed with us for laying down in front of them but it's very unnerving to have this experience.'

'We watch the news at night and although it's on a TV, I can't always see what's on the screen but rather graphics and cartoons which I've heard is quite common with Charles Bonnet syndrome. The most unnerving of all is returning home from an errand. I never return to my house. I may return to a funeral home, gas station, an auto repair shop or a factory holding tiers and tiers of cartons that are surrounding all of our household furnishings. This hallucination stays with me until interrupted by sleep. I never know how to get to where I'm going and yet my husband will say, "It's the same place it's always been, dear".'

'Finally I should mention that I have had certain hallucinations that actually were pleasant. I had visions of people, no longer living, that I miss including my father, an aunt and a good friend. This was very nice.'

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Ms S:

'In June of 2018, I was diagnosed with a primary psychotic illness. This illness comes with its fair share of visual hallucinations. During my second psychotic episode, I was chasing rats on the hospital floor. While I have no recollection of that time, my doctor informed me that I believed it to be real. Fast forward to January 30th 2020, when I had a hemorrhagic stroke whilst I was in a coma. This stroke damaged mainly my occipital lobe. This damage resulted in hemianopic vision loss which led me to have Charles Bonnet Syndrome (CBS).'

'I have learned how to distinguish between these two types of visual hallucinations. With CBS, my visions are much more detailed and do not take a life form. They are non-responsive to the environment around me, and often take the shape of patterns or distorted figures. With my psychotic hallucinations, however, the first thing that comes to mind when I see them is that they are real and impose an imminent danger to myself. With CBS, they serve mostly as a distraction; however, some images can be frightening. The main difference I have come to understand between the two is my emotional response to the hallucinations. The primary emotion I feel during my psychotic hallucination is fear. With CBS, it's bothersome. With CBS it’s life interrupted, with psychosis it’s life fractured. Life with a visual impairment has its own set of challenges, but it is "a life worth living".'

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Ms B:    'My name is Bernadette and I have CBS. But I didn't always know that. In fact, it was only after two years of having lived with the condition that I could finally put a name to it. For the two years before then, I had been through Heaven, Hell and Purgatory. A most troublesome time.'         

'First there was the wee green image and the beautiful 'out of this world colours'. This was the Heaven part. I then experienced faces, everywhere only faces with no body. The faces were Caucasian, in their forties and more males than females. Sitting outside on my first floor unit one day, I observed the single faces everywhere: in the frangipani tree, on buildings, roofs, on the washing line. I saw them at night too, eyes open or closed did not matter, they were there. I also saw different images, this is the crazy part, as if the previous scenario was not crazy either. I would observe an old man and a much younger woman, so happy to see each other, and they would kiss, by cheek to cheek. Then the old man would turn into the young woman and vice versa. Different faces... the old woman cheek to cheek with the much younger man. This was the Hell part.'

'I saw cartoon figures moving along my bedroom wall. I saw beautiful coloured images that turned into faces. That was bloody frightening as I was not expecting that at all. I even had a different encounter once from my usual experiences when I awoke in the darkness and an old man came in with a basin to wash my feet. Then I saw a movie super 8 machine with sections pertaining to the second world war. In particular, I saw two soldiers in a trench wearing circular metal hats. I saw two old men sleeping on the right side of my bedroom floor. Large as life in the next vision in the same area, I saw a brown horse sleeping followed by two fawn coloured Labrador dogs also sleeping. That was in October 2020 and I was in purgatory then. My purgatory state was the not knowing and looking for answers. I knew that I was not going through any mental disorder but I could not discuss this with anyone, except my twin sister Margaret, who listened to me. When seeing my eye surgeon, the closest I could say to him about my phantom images [hallucinations] was that I thought I had a brain tumour. Though I have a good GP I could not discuss this with her nor my optometrist as I felt that they would be judgmental and send me to a psychiatrist/ psychiatric facility.' 

'My redemption came on Dec 31, 2020 when I googled 'rare eye conditions' and Charles Bonnet syndrome came in at number five. My awakening was connecting with others in the CBS community.' 

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Ms V:

It is isolating not being able to communicate what you are experiencing…

There were many years where I had no explanation for what was wrong. Believing the symptoms to be somatic my GP referred me to a psychiatrist. It was genuinely good to have to talk to someone although I started to believe maybe my pain was unreal. Felt both relief and concern when my neurologist found an aneurysm. It was pressing into where the optic nerves cross over. It’s size, shape, and placement made it inoperable. Asking if the aneurysm was causing the visions the answer would be: “Maybe it is, maybe it isn’t”.

So isolating not being able to communicate your experiences. Just to explain, after a long busy day, my friends were in the backyard with a fresh poured glass of white. Going to join them things start to get weird. One friend’s skin is a fluorescent blue and the other sitting opposite a bright bright green. Only the skin, not the clothes, nor hair, or anything surrounding: so striking. You would think that that would be the most remarkable thing happening. In hindsight what was most remarkable is that I said nothing. My previous sharing of CBS visions had taught me not to speak up. Instead, I went home. This retreating was learnt from repeated comments: “Are you on drugs?”, “Think it is psychological”, and even, “There is nothing wrong: that is not happening”.

Although no longer explaining to friends and family, I never gave up with my doctors. After years of attempts, I photoshopped a set of images: black holes from space in the sidewalk, buildings turning into trucks driving down the road, text at bus stops becoming a scrambled mess, and city skyscrapers all curved and bent. These images expressed to the doctors with clarity the extent of the visions. A newly approved stent meant surgery was now possible and a gradual transition began. Nerves heal slowly. My visual problems had always been referred to as palinopsia. Charles Bonnet Syndrome was never discussed BUT the last time I visited my neuro-ophthalmic doctor I asked him about CBS and if that applied: he agreed. The complex visions slowly left, and only simple symptoms remain.

I really consider myself lucky: my aneurysm treated before rupture. Important to express my gratitude for the amazing medical care received. In addition, some of the pseudos [ie. CBS visions] I had were incredibly beautiful, breathtakingly so. Being able to communicate what you are experiencing – whether frightening or uplifting – can make a difficult situation better.

Dr. A-G:  'A few weeks ago, as I was being driven home, I began to see alongside the roadside, piles of timber logs alternating with grass-like huts, their roofs pointing to the sky. As soon as one set disappeared, another set appeared. This continued until the car stopped.'

'The following day, I was sitting in the clinic of my GP’s surgery with a number of acupuncture needles in my head. I was sitting quite still but wherever my eyes looked, I saw pieces of gingham-like cloth, white background with red and blue lines running parallel with each other across it. When the acupuncture session was over and I left the clinic, the ‘apparitions’ stopped.'

'A couple of days later, as I was having dinner with my daughter, a face appeared in front of me: a very suntanned face with a very high forehead, a large pair of spectacles posed crookedly across the bridge of the nose, and longish wavy grey hair. Wherever I looked, the face appeared. This lasted all the time I was sitting at the table. Over the following days, I kept seeing small children in striped pink and white pyjamas, nearly always from the back and wriggling their little bodies. This same image appeared repeatedly.'

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 Ms H:

'I was born with unilateral congenital cataract and lost sight in the affected eye. In my late teenage years, I was diagnosed with suspected glaucoma in both eyes. I began using anti-glaucoma medications. Then I started to experience visions… often flashes but also other things like text in various languages. I was sent to ER when I started to see the visions and was diagnosed with unspecified psychotic disorder. When I was given this diagnosis, I felt like there’s something seriously wrong with me. So I made an appointment with my eye doctor and he said my eyes look okay. So I went to see psychiatrists - several of them. I have met five psychiatrists so far and none of them was familiar with CBS. Two of them said that my visions were not part of schizophrenia but they could not explain what was actually happening to me. One of them suggested to me to just live with it. The rest of the doctors prescribed antipsychotics for the visions but none of them have worked.'

'I’m currently on a high dose of quetiapine nightly which is also used as a sleep aid. Since I see the visions even if I close my eyes, I have difficulty in sleeping and quetiapine helps me to sleep. But there’s a side effect of the sleep aid: sometimes I see the visions when I wake up in the morning, which is called hypnagogic hallucination.'

'Nearly 3 years after the visions had begun, I still did not know what was truly happening to me. Since every doctor had told me that they don’t think I have schizophrenia, I decided to investigate further. I looked up information about hallucinations and I found a book that looked really interesting. It was called Hallucinations by Dr Oliver Sacks. When I read the book, I thought that I may have CBS so I changed my mind not to rely on antipsychotics because I thought that it’s natural for me to see the visions. A little while later I connected with the online CBS community. It made me feel more confident that my mind was ok and I was not mentally ill at all.'

'I had also wondered about my glaucoma eye drops. I had already had a problem with one brand of eye drops causing me eye pain. Then Scot from the CBS Foundation informed me that some anti-glaucoma eye drops can trigger visions similar to CBS. So I notified my eye doctor and I now see the visions much less than before.'

'I look back over the past 2 to 3 years and all the doctors who assessed me. Since I saw visions only, they felt it didn’t meet the criteria for a psychiatric condition so they said I had ‘unspecified psychosis’. I believe that if the treating team at ER (or all the psychiatrists after that), had been familiar with CBS, then it could have saved me a lot of time and worry.'

______________

Ms B:    'I'm now 96 and live with macular degeneration. I have been 'seeing things' for nearly 20 years. Once in the hospital ward, I saw on the bare white wall, all green foliage with deer walking along... then the deer vanished. Later, I saw faces of women and they transformed into a grid of drawn faces in pen and ink.'

'In recent times, I have seen pages of text on my living room wall. Once it had the heading, 'Palm Trees'. Below was the following sentence: "The mature leaves are green but the new ones are yellow or greenish-yellow." Then I noticed that this same sentence was being repeated all the way down the page.' 

'I often have the experience of being in the garden and then when I enter my home, those same garden images follow me into the room.'  

______________

Mr M: 'After lunch, when I sit in the living room, I often see miniature people moving from the right to the left. They wear strange outfits like the umpa-lumpas from the Willy Wonka & the Chocolate Factory film. They seem to be busily going about their business. They never say anything but sometimes they look straight at me which can be a bit scary.'

______________ 

Ms V:  'I initially saw faces, gargoyle type faces, animals, birds, feathers, wings, flowers, plants, grasses, shapes, and grids in a Picasso-like abstract picture. Another way to describe it, is a patterned net curtain hanging over everything I look at, which is more pronounced when I stare at something, ie tv/computer or I am in a room with plain walls. My CBS is a shimmering embossed picture with a grey background, I don't see in colour. It is with me every minute of the day until I fall asleep. After nearly a year the pictures I see are smaller, so there are more of them but they are Lilliputian in size, I see a lot less faces and animals now too, it is much more jumbled/abstract, but it still shimmers and is still in a form of an embossed ghostly picture.'

______________

Ms P: 'I have macular degeneration and about 6 months ago, I started to see these super colourful shapes and figures. Fortunately, I was told about CBS by my eye doctor so I then began to enjoy them. Sometimes I see these climbing vines or plants which are such a rich green. I love seeing the strong colours but sometimes they are really, really colourful like when you put up the colour control on the TV to maximum.'

______________

Mr L: 'When I was in my early 70s I was diagnosed with glaucoma which has proceeded to get slowly worse over the years. I took eye drops 3 times a day and then my eye specialist tried laser surgery on each eye but that didn't seem to improve anything. Finally I had a trabeculectomy in each eye that cancelled the need for eye drops but left me with peripheral blindness and loss of depth perception. I also now had photophobia (aversion to bright light) and as a result I wear dark glasses outside and in any indoor places with bright overhead lights.'

'Sometime in 2013, I started seeing unusual visual objects between me and the subject I was looking at. It was varying from a mesh of usually red colour or a beaded screen that seemed to move down vertically (a sort of moving coloured beaded curtain). In the car as a passenger, I saw the road as a tunnel of covered bare tree branches; 3 storey buildings on the side where there are only single storey homes or piles of telephone poles stacked horizontally.'  

'What the hell was happening to me? I wondered. Then I discovered I had CBS. So I had visual hallucinations that don't exist in reality. And I couldn't get rid of them: they were everywhere in my sight. I went through all the emotions: despair, anger, frustration, irritation and finally, acceptance. There appeared to be no cure. I had a brain scan that was normal. I've just got to live with it and 'adapt to the situation'. 

'Later in 2015 I discovered I had a 90% blockage of my LAD (left artery ascending). After I later began experiencing pain in the left shoulder, the doctor told me it was time to implant stents and was put on medication to prevent blood clots for the rest of my life. Within one week, my CBS disappeared and has not returned. The doctor and I believe that my blood now being thinner than normal has increased the blood flow to my brain, together with more oxygen and the combination is a positive result. Would this work for others? Who's to know but that's an interesting question.'

______________

Mr I: 'This is a story of a strange Charles Bonnet illusion I had driving down to Lilydale from Healesville (ie. outer metropolitan Melbourne). It started as we were driving past Saint Hubert's winery. A powder blue fence sprung up on the right hand side of the car. Now, I have many CBS illusions and the most common place for me to have them is while being driven in a vehicle. By the time we reach the end of the winery, there was another fence on the left-hand side of the car and I was driving down a hallway. There were four panel doorways every four or five metres on both sides of this hallway.' 

'After the initial shock that comes with these illusions, I decided to just sit back and enjoy the drive. The fourth doorway along the hallway was open and I could smell potpourri and I saw in this room a shelf with stuffed toys on it. We got to the Coldstream traffic lights and the illusion sadly came to an end. We were on our way to a medical appointment in Lilydale and I sat down in the waiting room and struck up a conversation with a lady who happened to be an aromatherapist. To my surprise this woman mentioned CBS. I told her about my most recent experience and she was amazed when I came to the part about smelling potpourri... that my sense of smell operated during a CBS illusion. It was while talking with the aromatherapist that I realised I had just driven down my grandmother's hallway and the potpourri smell was part of her sewing room. In that room my grandmother would make stuffed toys: dolls, golliwogs, animals and balls for the sick children in hospital. She would donate them to the Children's Hospital in Melbourne. My grandfather would regularly walk from Hawthorn into the Children's Hospital with a wheelbarrow load of these toys.'

'My grandmother would often take me into her sewing room and play games with me with all the bits and pieces of the stuffed toys. She would put a dog's head on a golliwog, cat's tail on a doll, an elephant's head on a giraffe... all manner of things. (And all these decades later I was having very similar type CBS illusions.) One of my more memorable CBS episodes involves a bull with a greyhound's head on it. From the CBS experience of driving down my grandmother's hallway, I have found the answer to this other CBS episode that had concerned me for a long time. In telling this story, I hope it will encourage a lot of other people to talk of such images that flit through our brains at unexpected times and enjoy them. I do now.' 

______________

Mr P: 'I became aware of something spherical forming in the top left quadrant of my blindness…the sphere quickly focused into the round black straight haired head of an oriental girl with a ponytail at each side. The child was wearing a yellow one piece baby-grow type outfit with some black geometric design throughout, similar to a small diamond shaped polka-dot pattern. I was looking down at her on my left side where she was just standing for a while then her face changed to a very grotesque menacing one... the mouth was large and open with long white pointed teeth similar to a Monkfish mouth.'

______________

Ms B:  'I am 92 and live with macular degeneration. One day upon returning to my aged care facility, as I was walking down the hall towards my room, I noticed something strange. It looked as if someone had been very busy while I was away painting colours and lines to the many framed pictures that lined the hallway. I asked a friend to accompany me down the hall to show him. He couldn't see anything. I laughingly said,"I don't think they like men."  I then saw another friend and said, "Something is really worrying me and I don't know if I should tell you." I then blurted out, "I have been seeing things all week. I am seeing things that are not there." I was so relieved when she knew exactly what I was talking about. She explained it to me like it was a sort of phantom limb for deteriorating eyesight. I have been a nurse so I knew what this meant.'

'In that first week I saw a big bunch of grapes on the dinner table. I knew that they were not there but I would experiment by reaching out and trying to touch them. Needless to say, my hand went right through them... What I often see are clouds of prolific 'blossoms'. They are intensely coloured- mainly pinks but some lilacs and mauves. They are not on any branch or vine but just appear - clusters of them - clouds of little pretty circles. They are not flowers - but flower-like - the size of a 20 cent coin. They appear suddenly and disappear just as suddenly... they gather in groups or bunches of different sizes, but never singly. There is always a lovely atmosphere accompanying them - welcoming and beneficent.'

'I also see many - 40 to 50 - horses with shabby riders. With so much movement going on it's hard to describe details. It's dusty and after they ride up, they mill about in a chaotic way. When I told the nurse, she took urine samples and I was put on antibiotics. I guess the assumption was I was delirious. I find it interesting that not one professional specialising in Aged Care had even heard of these symptoms or of this syndrome. My friend sticky-taped a page of CBS information and this has been quite valuable when I have tried to explain to staff what I was experiencing.'

Source: https://www.charlesbonnetsyndrome.org/index.php/cbs-ii/personal-stories

Dawn said: “The biggest thing for me was that I’d thought I was losing my mind and that definitely did affect me. I imagined it was dementia. It’s very difficult to find anyone who knows anything about Charles Bonnet Syndrome.

“For me, when it started it was like I was seeing everything through a hedge or wire netting. I was also seeing a form of ordnance survey which went literally everywhere; across the furniture, up the ceiling, down the walls, across the carpet. I could never get quite close enough to see the name on the map – it used to make me quite cross.

“Occasionally I see people walking in the street in front of me but they never turn around. I never see their faces, but they give me the impression by the way they’re dressed that they’re from the 18th century and that they’ve just come out of a factory or something.

“I see gardens along the side of the street that I haven’t seen for years with beautiful colours, but they aren’t there, and I can’t even see yellow now.

“I have had the odd feeling in a car if I’ve been a passenger and we’ve stopped, that I feel and see the car moving. I do sometimes feel a bit unsure because of deciding whether something is or isn’t there – you’re never 100 percent sure.

“Normally I don’t worry about it; I’ve never been frightened by it. To me, it’s part and parcel of losing my sight.

“In the group calls you can support each other. I said I would always be there if anybody wanted to have a word about Charles Bonnet Syndrome. I thought because of my attitude towards it and the way I deal with it that I might be able to make it slightly easier for others who may have been worried about their experiences.

“I think there should be more awareness about Charles Bonnet Syndrome, with people with sight loss made aware that they might get so that if and when it comes you’re not frightened. It would save people going through that unsure feeling of worrying ‘what’s the matter?’.

“On one of the calls, Judith Potts from Esme’s Umbrella gave us a talk. If I’d heard stories like that before, I wouldn’t have gone through that phase of thinking I’d got dementia.”

Source: https://sightscotland.org.uk/articles/case-study/charles-bonnet-syndrome-dawns-story

How it started

Chris, from Kent, was diagnosed with age-related macular degeneration (AMD) in 2018 but he wasn’t aware the hallucinations were happening as a result of his sight loss. At first he didn’t open up about his experiences as he thought they could be a sign of a mental illness.

On Charles Bonnet Awareness Day (16 November), he has shared his story. 

“Having to deal with losing your sight is one thing and I had ignored it was happening,” he said. “As I tried to get my head around my sight loss, I thought I was seeing things running along the floor like shadows.

“I thought I had a mouse in my flat and things began appearing where they shouldn’t, for example, a great big spider coming out of my book or out of the TV. Again. I thought ‘am I going mad as well as losing my sight?’ So I kept the hallucinations to myself initially.”

When he eventually opened up about the condition, it didn’t make the hallucinations go away, but he did seek comfort in knowing why they were happening.

He said: “It didn’t make living with the syndrome any easier, but it was good to talk and in turn I spoke to my therapist about it. It gave me an idea of what I was going through.”

The impact on everyday life

It can be difficult to live with the hallucinations of Charles Bonnet Syndrome. Chris explained how they come on at any given time and this has an impact on his daily life.

“I have stairs in my flat and it’s happened before where I’ve fallen down them because one of the images has rushed up to me or the handrail has turned into snakes. They’re petrifying and I wouldn’t wish them on my worst enemy.

“When I go through a particularly bad vision I can’t do anything else because they can be so intense and in your face that I couldn’t move. But, it’s not just a fear of Charles Bonnet Syndrome itself. I’ve nearly burnt the flat down a few times because hallucinations have happened when I’ve cooked and there’s been an incident in the bath.

“It really can fill your life with fear. I’m fearful of cooking now so it has a knock on effect that way and in turn that can affect my eating. It affects so many elements of your daily life.”

Talking about Charles Bonnet Syndrome

Charles Bonnet Syndrome causes people with sight loss to see things which aren’t real. It affects up to half people living with AMD and a third will endure silent hallucinations that are distressing, intrusive and interfere with their daily lives.

When the UK was put in lockdown last year, as a result of the Coronavirus pandemic, Chris’ hallucinations intensified further.

However, through sharing his experiences with people at work he was able to begin accepting the condition.

He said: “I had to go in and explain I’d had no sleep and experienced this and that. At the same time it was a great healer because I was verbalising what was going on so people could understand and show me a bit of empathy. It became a bit of fun and the stories of my crazy images each day made their lives a bit happier during lockdown.”

He added: “You can shut your eyes and leave a room and those tips do work but the biggest thing for me was to accept the hallucinations. People had told me to ignore them but that would be me ignoring a part of my life. Once I began to accept them and to understand what the images were, I became less fearful and the images became easier to deal with.

“They’ve not stopped but these images are a part of me and perhaps they have tried or are trying to say something about me,” he said. “I turned the fear into fascination and I wondered what the hallucinations would mean if they could talk to me. What would they say to me? It was a way of acceptance and losing that fear."

Help and support is available

Chris is now part of a number of Charles Bonnet Syndrome support groups which he says have been a ‘lifesaver.’

For Chris, discovering a support network has made a world of difference and he encourages any other people with the condition to reach out.

“The biggest thing from that was there were groups of people who were all in this together and we don’t have to suffer alone. It takes away a small part of Charles Bonnet Syndrome’s power, that you’re not alone, there’s a place to talk and accept what’s happening and that’s so powerful.”

He added: “My advice to others is to join a group and that will stop you feeling alone with it. It’s okay to stand up and say you’re scared, so join the groups because everyone is going through it and they will become your biggest healers."

The Macular Society runs a Charles Bonnet Syndrome support group. This is done over the telephone and provides a chance to speak to other people experiencing Charles Bonnet Syndrome, as well as one of our professional counsellors.

Call the Advice and Information Service on 0300 3030 111 to find out more.

Have you experienced visual hallucinations due to macular disease? If you'd like to share your experiences, get in touch at stories@macularsociety.org

Read more about Charles Bonnet Syndrome.

Source: https://www.macularsociety.org/about/media/news/2021/november/charles-bonnet-syndrome-id-end-up-sitting-in-the-corner-crying-through-fear/

The hallucinations are not solely associated with lockdown, they are a manifestation of a condition that is little known but was, nevertheless, first documented as far back as 1760. Charles Bonnet Syndrome or CBS is named after the 18th-century Swiss naturalist and philosopher who noted his grandfather, with cataracts in both eyes, suffering from vivid hallucinations, despite being of sound mind.

Though much remains unknown about the condition’s underlying physiological and psychological drivers, experts believe it is exacerbated by tiredness and stress. Last week, Consultant Ophthalmologist Professor Mariya Moosajee told the BBC, "The main triggers are loneliness, reduced exercise, exposure to chronic depressing news - all things we are seeing in lockdown."

This is further supported by the U.K.-based charity the Royal National Institute Of Blind People, who report a 50% spike in calls about the condition to its national helpline. Additional research from University College London found that half of patients with CBS, which is believed to affect around 1 in 5 patients with severe sight loss and occurs more commonly in older patients, stated that their hallucinations had become more sinister during lockdown and 50% said they were now more frequent.

"Seeing" with the brain

The hallucinations are ascribed to neurological changes in the way the eyes and brain communicate during the course of various eye diseases, such as Age-related macular degeneration (AMD), cataracts, glaucoma and inherited retinal disorders. Kings College Neuroscientist Dr. Dominic Ffytche, the sole globally-acknowledged expert on Charles Bonnet Syndrome told The Mirror, “The nerve cells in the retina send a constant stream of impulses along the visual pathways, which are passed to the visual parts of the brain.”

“If the retina is damaged, the stream of impulses reduces. Paradoxically, the response of the brain is not to reduce but rather increase the cells firing, and it is this increase that causes hallucinations.” Also described by some as the sight loss equivalent of an amputee experiencing a “phantom limb,” the loss of vital brain signals to dampen down and regulate electrical activity in the visual cortex, can cause visions lasting for anything from a few seconds, to several minutes at a time.

The hallucinations themselves can be curious, even pleasant on occasions. People have reported “seeing” cartoon characters, unicorns, bubbles, rainbows and beautiful landscapes. Other images, such as floating musical notes, grids, shapes, mosaics and lettering and mathematical equations appearing on the wall at home, sound somewhat psychedelic but not necessarily disturbing.

Living in a horror movie

It is, however, the increased prevalence of sinister hallucinations during the long dark months of lockdown that are of greatest concern. Ghost faces, staring eyes, snarling devil dogs and zombies with blood dripping from empty eye sockets have all been cited. Strange apparitions, gargoyles, Big Cats roaming the garden and figures dressed in period costume have also been observed. Thankfully, the brain appears to be aware that what it is sensing is not real but as this first-person account demonstrates, the limitless nature of the human imagination means that some people experiencing CBS might journey to some very dark places.

Relaying his personal account of CBS on the National Eye Research Centre website, Dr Amit Patel, who lost his sight in 2012 due to a hemorrhage in both eyes stated, “My personal hallucination is of a young woman covered in blood, mud, and tears. “She stands in a terrifying silence and she follows me everywhere – on the train, on the tube, in the street. My wife has even heard me shouting at her in my sleep. My guide dog Kika can sense when I have a hallucination and she very sweetly puts her head on my knee to comfort me.”

Hallucinations, particularly the more frightening ones, can cause a surge in anxiety but there are very real physical hazards too, such as an increased risk of falling in the street or down the stairs if the hallucinations appear suddenly. Another sad aspect of Charles Bonnet syndrome is that individuals often suffer in silence. Due to the older age profile of most patients, some fear that the strange images are unrelated to their sight loss but are, instead, an early indication of dementia.

Talking helps

Five years ago, Judith Potts launched Esme’s Umbrella, an organization dedicated to supporting those living with Charles Bonnet Syndrome, in memory of her late mother, who immediately feared mental illness after experiencing the symptoms of CBS. “People who develop it think immediately they've developed a mental health condition," Potts said in an interview with BBC News. "So, they don't confide in anyone and they live in their world of uninvited images, it's utterly terrifying."

To make matters worse, for those that do disclose, many General Practitioners and medics are unaware of CBS and therefore initially suspect their patient may be experiencing a form of psychosis. However, Professor Moosajee is unequivocal in stating that there is no debate surrounding how very real CBS is.  “Ophthalmologists should all be aware of CBS. We are all taught about CBS and there is no myth about it,” she explained in a previous interview.

Later she continued, “We definitely know it affects patients and if people are misdiagnosed, then that is probably coming from non-ophthalmologists who are not aware of the condition.” If anything good is to arise from this latest surge of CBS cases, it might be that both public awareness and that of non-eye specialist healthcare professionals increases. There is currently no cure for Charles Bonnet Syndrome. Although, some medications, such as anti-depressants and anti-epileptic drugs, are sometimes used to reduce the symptoms. With practice, patients might be able to come up with their own strategies to make the hallucination go away. These might include adopting specific eye movements such as rapid blinking.

Reaching out towards the image, leaving the room, altering the lighting and creating a distraction by switching on the TV or radio may also be effective. People experiencing CBS are certainly encouraged not to suffer in silence. Instead, they should reach out to friends, family and healthcare professionals, as well as specific support networks and charities like Esme’s Umbrella and RNIB, where they can also share their experiences with others living with the condition.

Further research is needed to better understand the physiology behind CBS and this will likely include larger-scale clinical studies comparing the MRI scans of patients with sight loss who report the symptoms of CBS with those who do not. In the shorter term, it would be hoped that for those unfortunate patients currently feeling like they have been living in a horror movie over the past year, relief may not be too far away.

With national vaccination programs continuing apace and governments beginning to talk about the early stages of a Covid-19 exit strategy, perhaps the phantoms of the mind’s eye will slowly recede, once the all too real nightmare that has been enveloping the outside world for the past year does the same.

Source:https://www.forbes.com/sites/gusalexiou/2021/02/23/blind-people-experiencing-terrifying-hallucinations-on-the-rise-during-lockdown/?sh=39eac6d

Is vision necessary to “see” visions?

The discussion around whether ghosts exist has long been a debate. Though many have experienced a spooky encounter, it is usually short-lived and once-in-a-lifetime. For blind people with Charles Bonnet syndrome, seeing ghosts or chilling figures may be a regular occurrence. 

Charles Bonnet syndrome only affects people with partial to full blindness. Charles Bonnet syndrome also causes people to “see” visions. Charles Bonnet syndrome means, yes... blind people do see ghosts — which makes it a truly interesting phenomenon. 

So much about this condition is still unknown. Yet the symptoms of Charles Bonnet syndrome (including “seeing ghosts”) feel very real to those experiencing them. Which may be proof that seeing isn't always believing.  

Overview of Charles Bonnet syndrome

Charles Bonnet syndrome is a condition that affects people who have lost partial or complete sight. People with Charles Bonnet syndrome will experience visual hallucinations. But these people are also mentally sound. 

The hallucinations can range from flashes of light and color to disturbing and frightening images. Researchers believe the hallucinations are caused by spontaneous brain activity. 

When the eyes stop sending images to the brain for processing due to partial or full vision loss, the brain sometimes creates its own images. The brain will pull images and other stored information to create and project these hallucinations.

Hallucinations caused by Charles Bonnet syndrome often are so vivid that they resemble a real image or being. However, the person knows that they’re hallucinating and has no other sensory hallucinations, such as sound, smell or touch.

Between 10% and 30% of people with severe visual impairment in both eyes experience Charles Bonnet syndrome. Few people are aware of the condition and may be embarrassed by the hallucinations. Therefore, the actual number is suspected to be much higher.

Spooky hallucinations

People with Charles Bonnet syndrome cannot control when a hallucination appears, how long it lasts or what it is. Visions usually consist of different colors, patterns and shapes. Sometimes, however, more disturbing visions occur.

Dr. Dominic ffytche, a specialist in Charles Bonnet syndrome, says people often report seeing bodiless faces. These faces are often disfigured or have twisted features and seem to loom in front of the subject.

Dr. ffytche says people have also described seeing unfamiliar figures from a bygone era. The figures will be wearing Victorian-style clothing with an aristocratic wig or bonnet.

In fact, seeing people from the past is common in people with Charles Bonnet syndrome. However, why the brain projects these particular images is unknown. 

Judith Potts is the founder of Esme’s Umbrella. She established the organization to honor her mother, Esme, who had Charles Bonnet syndrome. Judith says her mother would frequently see an “Edwardian street-child.” Esme also saw faceless people sitting on her couch, who would only disappear if she went up and tapped them on the shoulder.

Other hallucinations Esme experienced included seeing gargoyles jump around her kitchen. She also saw worms wiggle around in her food.

A trauma doctor from London named Amit Patel lost his sight suddenly in 2013. Shortly after the incident, a girl resembling Samara from the 2002 horror movie The Ring appeared in front of him.

In an interview with Fight for Sight, Dr. Patel describes the girl as “wearing a white cloak, with long dark hair and blood coming out of her eyes.”

Dr. Patel describes the incident further in an interview with The Independent, saying, “She was so vivid. I could see the detail on her dress. There was blood smeared on her face.” According to Dr. Patel, the hallucination of the girl has continued to appear regularly since 2013.

Pandemic causes increase in sinister visions

Experts believe stress can be what turns a fantastical hallucination into a frightening one. A 2009 case report examined a legally blind Australian woman who had Charles Bonnet syndrome: 

In the woman’s four-year history with the condition, her hallucinations were not typically sinister. However, her hallucinations started changing on “Black Saturday.” 

Black Saturday marks an event in Australian history. Brushfires ravaged 14 regions across the state of  Victoria. The woman lived in one of the affected areas, and she was evacuated from her home. For several days following the event, the woman’s hallucinations included seeing her family members’ faces melt off.

With this in mind, it seems fair to assume that the ongoing COVID 19 pandemic has caused a spike in unsettling hallucinations. A study done between June and July 2020 surveyed 45 people with active Charles Bonnet syndrome. Of those surveyed, 56% experienced more frequent and sinister visual hallucinations during lockdown.

Dr. Patel, mentioned earlier, admitted that he also experienced more hallucinations in the early days and weeks of lockdown.

Scientists think the scarier visions may be caused by loneliness, lack of exercise and environmental factors. This includes pandemic-related stay-at-home orders and frequent exposure to depressing news.

Stress triggers disturbing visions, which create stress for the person seeing them, and a vicious cycle occurs. To worsen matters, many people fear they will not be believed or will be labeled mentally ill if they share what they're seeing. This includes keeping their medical and eye doctors in the dark.

As a result, the stress isn’t dealt with, which only makes said vicious cycle all the worse. 

Research to find a cure

In August 2020, Fight for Sight announced that it would fund two research projects. The funding was granted to Cardiff University and the University of Oxford. The goal of the research is to better understand Charles Bonnet syndrome and hopefully find a cure. 

Cardiff University’s research aims to find out if peripheral vision is more prone to hallucination than central vision. Visually impaired people with Charles Bonnet syndrome rely more on their peripheral vision. 

Peripheral vision draws from the previous experience and expectation part of the brain. The study will use fully sighted people and induce hallucinations to see how they compare to those with Charles Bonnet syndrome.

The University of Oxford will use MRIs to compare the brains of fully sighted people with the brains of people with Charles Bonnet syndrome. The theory is that abnormal chemical levels in the visual areas of the brain may be the cause of hallucinations.

Between these two studies, the goal is for the findings to be significant enough to spark bigger, more in-depth studies.  

Resources for people with Charles Bonnet syndrome

The key to finding a cure for Charles Bonnet syndrome is awareness and acceptance. The hope being that this will encourage people to share their experiences. Educating people can create a community. This could help those who otherwise may suffer silently or alone.

There are few resources available within the U.S. for people with Charles Bonnet syndrome, compared to the UK and Australia. The American Foundation for the Blind offers general support for people with the condition.

Fortunately, the internet has made it easier than ever to spread the word. For example, Facebook groups related to Charles Bonnet syndrome build community. They can also be a resource for those who care for people who have the syndrome.

Source: https://www.allaboutvision.com/conditions/do-blind-people-see-ghosts/

1 person in every 600 may not be aware they have CBS and instead, may mistakenly report what they see as a paranormal event.

Following his wife’s death, David Stannard became accustomed to spending quiet evenings alone at his home in Walton-on-Thames, Surrey. So it came as a surprise to the 73-year-old when he looked up from his television one evening to discover he was sharing his living room with two RAF pilots and a schoolboy. ‘The pilots were standing next to the TV, watching it as if they were in the wings of a theatre,’ he says. ‘The little boy was in a grey, Fifties-style school uniform. He just stood there in the hearth looking puzzled. He was 18 inches high at most.’

Mr Stannard’s guests never said a word and vanished after 15 minutes. That night, he says, the walls of his house, which had always been white, looked as though they had been redecorated in patterned wallpaper with a brickwork effect.

The next morning he was caught off-guard again when he found a fair-haired girl standing on his sofa. She also appeared to be from the Fifties, but was life-size, wearing a short skirt and pink cardigan, with chubby knees, white ankle socks and ribbons in her hair.

‘I watched her for a while,’ he says. ‘She didn’t move much. Then she was gone.’

Classic case paranormal reports, from not one person but many the world over. But is there an explanation? In the case of Mr Stannard there is, it would be easy to dismiss Mr Stannard’s story as the bizarre imaginings of an elderly mind. Fortunately, he knew he wasn’t losing his mind; neither was his house haunted.

A few weeks earlier he had been registered blind, though he was still able to watch television if he sat at a certain angle. He’d been warned that as his eyesight deteriorated, he might experience visual hallucinations in the form of Charles Bonnet Syndrome

Charles Bonnet syndrome is a term used to describe the situation when people with sight problems start to see things which they know aren’t real. Sometimes called ‘visual hallucinations’, the things people see can take all kinds of forms from simple patterns of straight lines to detailed pictures of people or buildings.

A Swiss philosopher named Charles Bonnet first described this condition in 1760 when he noticed that his grandfather, who was almost blind, saw patterns, figures, birds and buildings which were not there. Although the condition was described almost 250 years ago, it is still largely unknown by ordinary doctors and nurses. This is partly because of a lack of knowledge about the syndrome and partly because people experiencing it don’t talk about their problems from fear of being thought of as mentally ill.

Charles Bonnet syndrome affects people with serious sight loss and usually only people who have lost their sight later in life but can affect people of any age, usually appearing after a period of worsening sight. The visual hallucinations often stop within a year to eighteen months.

The exact cause of Charles Bonnet Syndrome is not presently known, but the popular theory suggests that the brain is merely attempting to compensate for a shortage of visual stimuli. Consider that each human eye normally receives data at a rate of about 8.75 megabits per second, a bandwidth which is significantly greater than most high-speed Internet connections. The visual cortex is the most massive system in the human brain, and it is packed with pathways which manipulate the rush of visual data before handing it over to the conscious mind. When disease begins to kink this firehose of information, a legion of neurons are left standing idle.

It is worth noting that the human brain already has significant talent in dealing with partial blindness. Every human eye has a blind spot where the optic nerve passes through the retina, and the visual cortex automatically fills in these blind spots by extrapolating what should be there based on the surrounding detail. Since a person’s two blind spots do not overlap, the brain can also cross-reference the eye data when both eyes are active. In gradual-onset blindness, it is possible that these brain pathways attempt to fill in the new obscured areas. Since the eyes are sending reduced amounts of data with a greater frequency of errors, the visual cortex may produce more and more outlandish guesses.

At the moment little is known about how the brain stores the information it gets from the eyes and how we use this information to help us create the pictures we see. There is some research which shows that, when we see, the information from the eyes actually stops the brain from creating its own pictures. When people lose their sight, their brains are not receiving as many pictures as they used to, and sometimes, new fantasy pictures or old pictures stored in our brains are released and experienced as though they were seen. These experiences seem to happen when there is not much going on, for example when people are sitting alone, somewhere quiet which is familiar to them or when they are in lying in bed at night.

An estimated 100,000 people in the UK have Charles Bonnet Syndrome, but many won’t realise it because the condition remains something of a mystery

Usually people with Charles Bonnet syndrome are aware that their hallucinations, although vivid, are not real. Charles Bonnet syndrome hallucinations only affect sight and do not involve hearing things or any other sensations. People with Charles Bonnet syndrome do not develop complicated non-medical explanations about the cause of their hallucinations (sometimes called ‘delusions’)..

There seem to be two different kinds of things people see. Both of them can be black and white or in colour, involve movement or stay still, and they can seem real – such as cows in a field, or unreal – such as pictures of dragons.

Firstly, there are the hallucinations of patterns and lines, which can become quite complicated like brickwork, netting, mosaic or tiles.

Secondly, there are more complicated pictures of people or places. Sometimes whole scenes will appear, such as landscapes or groups of people, which are sometimes life-size, and at other times are reduced or enlarged in size. These pictures appear ‘out of the blue’ and can carry on for a few minutes or sometimes several hours. Many people begin to recognize similar things appearing in their visions such as distorted faces or the same tiny people in particular costumes.

Generally the pictures are pleasant although the effects can be scary.

Sometimes the complicated pictures can make it difficult to get around. For example, streets and rooms may have their shape changed or brickwork and fencing appear directly in front of you making it difficult for you to judge exactly where you are and whether you can walk straight ahead. One gentleman describes how, approaching the top of the stairs, he had a vision of being on top of a mountain, and had considerable problems getting down the stairs. Good knowledge of your surroundings can help overcome this particular problem.

The complicated pictures can sometimes be a little scary. Although the visions themselves may not be of anything frightening, it is disturbing to start seeing strangers in your home or garden. People often overcome this by getting to know the figures in their visions. Another man describes how, when he wakes up in the morning, he says to the figures he is seeing: “Right, what have you got in store for me today?” This allows him to have some control over the way he feels about his seeing things.

So a little affliction, which, if put into the perceptions of UK paranormal reports, and a population of around 60,000,000 divided by the number approximately suffering from Charles Bonnet Syndrome of 100,000. Means that there is a high chance of 1 person in every 600 who may not be aware of their condition and instead, may mistakenly report this as a paranormal event.

Could this be another plausible explanation for medical conditions causing paranormal like events?

Source: https://rationalmindsparanormal.blogspot.com/2014/08/are-some-ghost-sightings-symptoms-of.html