Focus on Charles Bonnet Syndrome

Information

Please note that this page is for information only, it is not a replacement for medical advice.
If you have any questions regarding Charles Bonnet Syndrome or any other vision condition, please consult a medical professional. 

What is Charles Bonnet Syndrome?

Charles Bonnet Syndrome - also known as CBS - is a medical condition in which people with significant vision loss experience visual hallucinations. These hallucinations are always silent and are not a mental health condition.

 

The syndrome was named after the Swiss naturalist and philosopher Charles Bonnet, who first described the condition in 1769.

The hallucinations in CBS can take many forms. These include patterns, objects, people, plants or animals, and they can be very realistic, detailed, and are often described as disturbing. No other senses are involved in these hallucinations, so there will be no accompanying noise or smell etc. They may last for seconds, minutes, or even hours, and they often occur in a pattern, such as at a certain time of day or in a certain environment.

Charles Bonnet Syndrome can affect people with different eye conditions, such as age-related macular degeneration, glaucoma, or diabetic retinopathy. It is believed that the CBS hallucinations are caused by the brain trying to compensate for the lack of visual stimulation from the eyes.

Although the hallucinations in Charles Bonnet Syndrome can be disturbing or frightening, the condition itself is not a mental illness. People with CBS usually retain their mental abilities and are aware that their hallucinations are not real. Treatment options for CBS include educating patients about the condition, managing any underlying eye conditions, and using medications or cognitive behavioural therapy to alleviate anxiety or stress related to the hallucinations.


 

"Charles Bonnet Syndrome is surprisingly common and may affect up to 50% of people with visual loss"

Dr Sarah Jarvis MBE, talking to the charity Esme's Umbrella

 


 

Symptoms of Charles Bonnet Syndrome

The main symptom of Charles Bonnet Syndrome (CBS) are visual hallucinations, experienced by people who have significant vision loss or blindness. They can be experienced at any age.

The hallucinations can take many forms, including patterns, colours, geometric shapes, objects, people, plants or animals. These hallucinations can be very vivid, detailed, and colourful, and they can occur either in the centre of the visual field or in the peripheral vision. They are entirely visual, so don't come with any other sensory hallucinations such as an accompanying noise or taste. 

Other symptoms of CBS can include anxiety or stress related to the hallucinations, confusion, and difficulty distinguishing between the hallucinations and reality. People with Charles Bonnet Syndrome may also feel embarrassed or reluctant to discuss their hallucinations with others, due to fear of being labelled as mentally ill.

It's important to note that while the visual hallucinations in CBS can be quite vivid, they are not a sign of mental illness or dementia, and people with CBS are otherwise mentally healthy. People with Charles Bonnet Syndrome are able to lead productive and fulfilling lives, once they understand the condition and learn how to cope with the hallucinations.

 

How someone with Charles Bonnet Syndrome might view the world  

Image showing an alley between two buildings. Two large cartoonish cats appear on the path. This represents a hallucination which someone with CBS might experience      

Please note this is a simulation of Charles Bonnet Syndrome, based on the anecdotal experiences of people who have the condition.

This image is not the experience of everyone with CBS and is for illustration purposes only.


 

Diagnosis of Charles Bonnet Syndrome

Diagnosing Charles Bonnet Syndrome (CBS) usually involves ruling out other possible causes of visual hallucinations, such as medication side effects, mental illness, or neurological conditions.

To diagnose CBS, a doctor will typically conduct a thorough medical history and physical exam, including an eye exam to assess the extent and type of visual impairment. The doctor may also order imaging tests, such as an MRI or CT scan, to rule out any underlying neurological conditions that could be causing the hallucinations.

In addition, the doctor may ask the patient to describe their visual hallucinations in detail and may ask about other symptoms, such as anxiety or stress related to the hallucinations.

A diagnosis of Charles Bonnet Syndrome is typically made when a person has visual hallucinations that are not caused by any other medical or mental health condition, and they have significant vision loss or blindness due to an eye condition.

It's important to note that some people with CBS may be hesitant to talk about their hallucinations, due to fear of being stigmatised or labelled as mentally ill. Therefore, doctors may need to be proactive in asking about visual hallucinations and creating a safe and non-judgmental environment for patients to discuss their symptoms.

 

Treatment for Charles Bonnet Syndrome

There is no cure for Charles Bonnet Syndrome (CBS), but there are several treatment options that can help manage the symptoms and improve the quality of life for people with the condition.

One of the most effective treatments for CBS is education and counselling. Doctors can help patients understand the nature of their hallucinations and reassure them that they are not a sign of mental illness or dementia. Patients can also be taught coping strategies, such as relaxation techniques, to help reduce anxiety or stress related to the hallucinations.

In addition, treating any underlying eye conditions that are causing vision loss can help reduce the frequency and intensity of the hallucinations. This may involve surgery, medication, or other therapies.

If the hallucinations are causing significant distress or interfering with daily activities, medications such as antipsychotics or antidepressants may be prescribed. However, these medications should be used with caution, as they can have side effects and may not be effective for all patients.

Cognitive-behavioral therapy (CBT) is another treatment option that can help patients manage the anxiety and stress related to the hallucinations. This therapy focuses on changing negative thoughts and behaviours related to the hallucinations and can help patients develop coping skills and relaxation techniques.

It's important to note that the best treatment approach for CBS will depend on the individual patient and their specific symptoms and needs. Therefore, patients with CBS should work closely with their healthcare provider to develop a personalised treatment plan.


 

"CBS affects every person differently. For some people, the vivid, silent, visual hallucinations are easy to tolerate, occur infrequently and are pleasant – even entertaining – in appearance. However, for others, CBS episodes are described as being ‘like horror films’, constant and terrifying."

Esme's Umbrella

 


Living with Charles Bonnet Syndrome

Charles Bonnet Syndrome (CBS) can be challenging, but there are several strategies that can help people cope with the condition and maintain a good quality of life.

First and foremost, it's important for people with CBS to understand the nature of their condition and be reassured that the hallucinations are not a sign of mental illness or dementia. Education and counselling can be very helpful in this regard, as they can provide patients with accurate information about CBS and teach them coping strategies to manage the symptoms.

Patients may also find it helpful to keep a diary of their hallucinations, noting the time of day, location, and any triggering factors. This can help them identify patterns in their hallucinations and develop strategies to minimize their occurrence.

In addition, patients may find it helpful to engage in relaxing activities, such as meditation, yoga, or listening to music, to help reduce anxiety and stress related to the hallucinations.

It's also important for patients with Charles Bonnet Syndrome to maintain their independence and engage in activities they enjoy. This may involve using assistive devices or assistive technology to help with daily tasks or pursuing hobbies that do not require visual stimulation.

Finally, patients with CBS should be encouraged to seek support from family, friends, or support groups. Connecting with others who have similar experiences can be very helpful in reducing feelings of isolation or stigma related to the condition.

In summary, living with Charles Bonnet Syndrome may require a multidisciplinary approach, including education, counselling, medication, and lifestyle modifications. With the right support and strategies, most people with CBS are able to lead fulfilling and productive lives.

 

 

Where to find more information about Charles Bonnet Syndrome

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Esme's Umbrella

A UK charity that aims to educate, raise awareness, offer support and source funding for research into Charles Bonnet Syndrome.  

Visit Esme's Umbrella >

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NHS Website

Find out more about Charles Bonnet Syndrome and learn when and how to get treatment in the UK, visit the NHS Health website. 

NHS CBS >

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Macular Society

Information, research and support for people living with sight loss caused by Macular disease 

Visit Macular Society>

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