Charles Bonnet Syndrome Foundation

16/10/2025

10/06/2025

STUDY EXPLORES CBS AWARENESS AMONG EYE SPECIALISTS

A new study published in the journal, International Ophthalmology, investigated the responses of over 300 eye specialists to a series of questions on Charles Bonnet syndrome. More than 90% of these responses came from ophthalmologists in Europe and Asia.

Some of the findings include:

• 63% of the ophthalmologists were aware of CBS, yet only 21% were able to accurately answer 4 questions pertaining to the syndrome. (eg. definition, content of hallucinations, visual acuity range)

• 66% of the ophthalmologists had not encountered a single case of CBS in the past year. Linked to this was the observation that 84% conceded they never screened for CBS in their patients.

• Over 65% of eye specialists believed that suspected CBS cases should be referred to neurology and psychiatry.

SUMMARY

In one sense, there are no surprises from these findings. Rather, they merely confirm what has long been suspected. Even so, it highlights the road ahead for vision-impaired patients (& their loves ones) to receive adequate responsiveness from eye specialists.

The finding that the majority of ophthalmologists (65%) believe that suspected CBS cases should be referred to neurology and psychiatry suggests a reluctance to assume responsibility for the syndrome. If these outcomes are reflective of the wider field of ophthalmology, then it appears there's a concerning tendency for this clinical specialty to absolve itself of handling the syndrome.




REFERENCE: Gunduz et al (2025). Awareness of Charles Bonnet syndrome among ophthalmologists: a survey study. Int Ophthalmol Vol 45:207.

21/02/2025

CBS MEDIA OPPORTUNITY

ABC (Adelaide) in South Australia is seeking a person under 39 yrs of age who is willing to discuss their personal journey of living with CBS for an upcoming ABC program. The person needs to be living in Adelaide, Sth Australia.

Anyone who is interested in taking up this offer, please contact Scot Muirden at the CBS Foundation: scot@charlesbonnetsyndrome.org

27/11/2024

Hello all,

Professor Peter Allen and his team in the UK is undertaking the following study on CBS [which is also extended to Americans & Australians]. If you have a spare 10 mins to undertake the survey, please support this endeavour. Professor Allen writes:

"We are interested in a possible relationship between physical activity levels, sleep, and the prevalence of the visual phenomenon of Charles Bonnet Syndrome. We are currently conducting a survey to better understand how physical activity and sleep levels may impact these visual phenomena. If we find a relationship, we will be conducting further work to try and help people with Charles Bonnet Syndrome reduce the visual phenomenon they experience. The survey takes approximately 10 minutes and is aimed at people with vision loss who live in Australia and who have Charles Bonnet Syndrome. The link to the survey is here, it is appropriate for screen readers too:
https://aruspsych.eu.qualtrics.com/jfe/form/SV_5vCoWnQYF5OKsbc

24/09/2024

CBS VIDEO DEPICTION FROM AUSTRALIAN STUDY
PhD candidate, Vicky Hamilton, of Griffith University in Queensland, Australia is now in the latter stages of her CBS study.

One facet of her study is to collect people's personal accounts of their CBS and try to depict those visions in a way that can be made accessible to a wider audience: for example, an installation display at an art exhibition. Vicky has very kindly made available to the Foundation a few snippets of her project. To learn more about Vicky's work, please visit: https://cbsvisions.com/

The depiction presented here is from subject 50 and the visions encountered in her bedroom. In her words: "Why am I seeing this, what is happening to me? I have sight loss but didn't associate it with that, until I told my optician what was happening. Once I knew what was happening, they were beautiful little drawings. A lot like those my grandchildren and children drew when they were young. It's usually when I wake up in the morning after I've got up and I'm coming back into the bedroom. The room, the ceiling, the wall, the carpet, and the bed is covered from top to bottom... it was like a checkerboard. All very brightly coloured: pink, blue, yellow, green, orange, and purple. The visions where pleasant once I realised what was happening."

03/09/2024

WARNING to all members

Over recent times, two posts have been submitted to the group promoting T-shirts for sale: one a generic one about “being unique” and another with the slogan “CBS awareness”.

We believe that both posts contravene the rules of the group (ie. no commercial advertising) and further we have some reason to suspect they may be scams. The ‘CBS awareness’ t-shirt is not endorsed by any known CBS organisation (that we are aware of) and there’s some evidence already the links provided may be bait for online theft. Please exercise caution.

We have sent warnings to both these posters and any subsequent breach will have them permanently removed from the group. Unfortunately, nowhere online seems to be safe from people who have ulterior motives.

13/06/2024

DO YOU HAVE VISION & HEARING IMPAIRMENT?

For those who are living with dual sensory impairment [or as a loved one for someone contending with this situation], Macquarie University in Sydney is seeking participants to aid in their research. You need to be an Australian citizen to apply. Please view the poster below for more details.

22/04/2024

MEDICAL OPTIONS FOR CBS: THE CURRENT STATE OF PLAY

Often when people look online for information about CBS, particularly possible treatments, they will come across comments that there is no treatment let alone a cure. At a general practitioner or specialist consultation, some patients are told, "there's nothing we can do for you". To read this online or to hear directly from a medical practitioner can be really deflating. However, these views are slightly misleading.

The Foundation wishes to outline the actual state of affairs when it comes to medically treating CBS:

1. The primary medical way of treating CBS is undertaking any viable procedure to improve a person's vision. An example would be cataract surgery. There are certainly case reports of a person's CBS completely disappearing upon vision improvement. Even so, two cautionary points need to be made. First, even when a medical procedure has led to the improvement of a patient's vision, there is no guarantee that it will resolve CBS. We don't know the percentages of people whose CBS has resolved after improvement of vision as no research has been conducted into this particular matter. Second, some eye conditions currently have no medical interventions available to the patient to improve vision.

2. The second option is prescribed medication. There are five principal categories that these medications fall under: anticonvulsants (anti-seizure), antipsychotics, antidepressants, benzodiazapines ('sedatives') and acetylcholinesterase inhibitors (designed to block the break down of the chemical neurotransmitter, acetylcholine). All of these 5 categories have encountered some success with treating CBS and this has been reported in various medical journals. The problem is that no prescribed medication - from any of these 5 categories - is effective for the majority of patients. This means that a prescribed medication sometimes leads to complete resolution of CBS but the emphasis sadly is on 'sometimes' so the success rate of any of these medications is modest at best.

3. Whether any of the above categories of drugs could be appropriately prescribed for an individual's unique circumstances would require the careful consideration of a medical practitioner. If you or a loved one is considering going down this path, it's useful to also ask about possible side effects from such medications so one can make an informed decision.

4. Aside from prescribed medications, there is a non-invasive medical procedure known as repetitive transcranial magnetic stimulation (rTMS). This relatively safe procedure introduces magnetic pulses to a specific region of the brain in order to adjust brain activity. rTMS is already widely used for treating depression, stroke rehabilitation and pain management. In Australia at least, for these conditions, the rTMS procedure is typically covered by the health care system (Medicare) but its usage for CBS is not presently covered. Consequently, this option may well mean out-of-pocket expenses and the costs could be quite steep. Preliminary exploration of rTMS for CBS patients has been occurring over the past two decades and shows some promising signs. However, barriers still remain in terms of formal recognition, accessibility and affordability. In terms of countries outside Australia, whether rTMS is (partially or fully) subsidised by the government or one's health insurance premium would need to be clarified.

5. The above explores medical treatments currently available for CBS. There are non-medical options which can be explored too. Go to this link for more:

Charles Bonnet Syndrome site is a resource for members of the public and health care professionals to access information and assistance.

23/11/2023

MORE THAN MEETS THE EYE

Despite awareness initiatives, Charles Bonnet syndrome continues to languish at the margins of medical interest. One of the consequences of this state of affairs is that outdated information and misconceptions thrive. One such misconception is that eye disease (or injury) is the sole cause of the syndrome. This covers well known eye conditions such as macular degeneration, cataracts and glaucoma.

What is less understood is that the syndrome can be triggered even when a person’s eyes are (structurally) fine. CBS can occur when there is damage anywhere along the visual pathways: from the optic nerve to the visual region of the brain (back of the head). Common medical causes for such damage includes stroke, brain tumour or traumatic head injury.

A recently published case adds a further layer to how susceptible the visual pathways can be to a negative outcome. An American woman, 60, with very good vision (6/6 in one eye [20/20] and 6/9 in the other [20/30]) was found to have a tumour behind the top of the nose and at the base of the brain. The vast majority of this tumour was successfully removed. She was subsequently given radiation therapy to attack the small remnants of the tumour that remained.

All seemed to be going well after the first 10 months as evidenced by another good eye test result and no unwanted symptoms. However, just two months later (ie. 12 months since completing her radiation therapy), it was discovered that the woman had suffered significant damage to the optic nerves. It was around this time that the woman first began to encounter unusual visual experiences including seeing “geometric patterns, lions with manes and women’s faces”.

It was determined that the radiation therapy had led to the deterioration of the optic nerves and its effects were still being felt. Since then, her vision has continued to decline. Alongside her progressive sight loss, her CBS visions have increased.

This case highlights that any damage to the optic pathways (beyond the eye itself) can be sufficient to activate CBS.

Reference: A case of vision loss from radiation-induced optic neuropathy resulting in Charles Bonnet syndrome (2023). Applied Radiation Oncology, Vol 12(2): 34-38.

11/10/2023

HALLUCINATIONS (VISUAL)

Now that we've got your attention, let's talk about the uncomfortable topic and how it relates to Charles Bonnet syndrome (CBS).

The word 'hallucination' has come to be associated in society with something significantly wrong in the mind. When a person experiences a visual hallucination ('seeing things that are not really there'), there are grave fears for mental illness, delirium or dementia. In the field of psychiatry, hallucinations are seen as a primary indicator that something is not quite right and that perhaps the person has lost a sense of contact with reality.

When the term 'visual hallucination' is raised, it conjures up a fearful prognosis for oneself or a loved one. The reason is simple: people tend to only know hallucinations as signs of illicit drug use or - far more commonly - a defective mind. That is, something has gone wrong in the brain.

So when a vision-impaired person begins to see things in their immediate environment that others cannot see, then it's quite understandable that they start to question their own experiences and what it means for them. For example, seeing orange elephants floating across the room every day before dusk is seen as just plain weird and very concerning. Many can arrive at the same thought: "First I lost my vision, am I now also losing my mind?"

With many types of clinical conditions, the person often believes - or has a strong suspicion - that what they see is genuinely real. This is known as a true hallucination. However for CBS, within the first couple of weeks of their visions, the vast majority have concluded that what they see - even if incredibly life-like - is not (or cannot be) real. This ability to quickly work out that what they 'see' is actually the eyes (or the brain) playing tricks on them shows that their thinking remains sharp and sound. This scenario, which is so often played out for someone living with CBS, sets them apart from those in the community experiencing true hallucinations.

True visual hallucinations require two features:

* A person sees things that are not really there
* The person believes that what they see is real

With CBS, point one is definitely present but typically point two is not. CBS is not associated with any form of mental illness, dementia or delirium. It is rather a most unusual side effect of the brain's response to vision loss.

18/01/2023

AUSTRALIAN CBS STUDY

In March 2022, we let the community know of a PhD student in Queensland, Australia who was investigating CBS. She needs a few more people willing to assist from anywhere in the world. She writes:
Hi! A big thank-you to everyone who did the survey 😊. We are looking for just 3 more people to fill in the survey. The survey will remain open for just one more week.
As background, my name is Victoria, and I have CBS visions from a brain aneurysm that was pressing into my optic chiasm. This personal experience has led me to this PhD research with Griffith University. Importantly this is creative work with an outcome of a digital interactive exhibition.
Please note:
I apologise that there has been a delay in the beginnings of these focus groups. This is something that was unexpected. Hopefully this does not put anyone off further participation. Click below to begin

Charles Bonnet Syndrome (CBS) visions are wide-ranging: can be beautiful, strange, or even confusing. We are doing this survey to look into any connections between visions and thought. The aim is to provide valuable insight into CBS and to raise awareness.

25/10/2022

"SHOCKINGLY LARGE" : THE TRUE EXTENT OF CBS WORLDWIDE

A recently published paper from Denmark has undertaken the first attempt to estimate how prevalent CBS is in the world. Published last month in the Annals of Eye Science journal, their meta-analysis concluded that 19.7% (or 1 in every 5 people) who experience vision loss will develop CBS. They translate this percentage to estimate a global figure of 47.2 million people affected by the syndrome.

Perhaps, just perhaps, this sobering finding will be the wakeup call for the health care sector to start to take the syndrome seriously. For far too long CBS has been downplayed and even ignored by a wide range of medical and health care professionals.

In the editorial section of September’s journal, it is stated:

“The number of low vision patients that suffer from visual hallucinations is shockingly large… The first step in addressing CBS is the recognition by ophthalmologists that this condition is highly prevalent in our patient population.”

The Foundation welcomes this development as it speaks to the enormity of the situation. The estimate of 47.2 million people affected globally by CBS may be a conservative figure. First, their study only applies to people over the age of 40 and yet we know younger populations are affected. Second, the study suggests 1 in 5 people will develop CBS yet there are many studies indicating that 1 in 3 may paint a more accurate picture.