What is Charles Bonnet syndrome?

Charles Bonnet syndrome is a condition where people with vision loss have repeated visions despite being mentally healthy. These visions are sometimes called ‘phantom images’.

The condition can affect people of any age. But it’s more likely to occur in older people with significant vision loss.

Causes of your vision loss may be:

• macular degeneration
• diabetic retinopathy
• glaucoma
• cataracts
• stroke

If you have Charles Bonnet syndrome, you do not have a mental illness. Rather, you have a problem with your vision.

What are the symptoms of Charles Bonnet syndrome?

People with Charles Bonnet syndrome report seeing visions of:

• patterns
• people
• plants and animals
• buildings and other day-to-day objects
• entire landscapes

The visions can:

• be colourful or just black and white
• be moving or still
• appear real or unreal

You might be diagnosed with Charles Bonnet syndrome if you:

• have recently seen visions
• know what you saw was not real
• are not mentally unwell

The visions can come and go, lasting for just a few seconds or continuing for many hours.

The time from when Charles Bonnet syndrome starts to when it stops varies a lot. It ranges from a few months to many years.

What causes Charles Bonnet syndrome?

Experts do not know what causes these visions. It seems to be related to how your brain responds to your declining vision.

Some people think the brain invents fantasy pictures or releases old pictures from your memory. This is done to make up for not receiving as many images through your eyes.

Up to 1 in 3 people with significant vision loss will experience Charles Bonnet syndrome at some point.

When should I see my doctor?

If you think you might have Charles Bonnet syndrome, talk to your doctor, optometrist or eye specialist.

Many people with Charles Bonnet syndrome never tell anyone about their symptoms and so they never get a diagnosis.

You may worry that people might think you are having hallucinations, or that your doctor might not take you seriously.

How is Charles Bonnet syndrome diagnosed?

Diagnosing Charles Bonnet syndrome involves taking a full medical history and examining your eyes. It may also involve a physical examination and tests for other causes of your visions.

Charles Bonnet syndrome is diagnosed by excluding other explanations for your visions.

Your doctor may also refer you to a neurologist (doctor specialising in conditions affecting the brain and nervous system).

How is Charles Bonnet syndrome treated?

Unless the cause of your vision loss can be treated, there is no treatment for Charles Bonnet syndrome. In the case of severe cataracts cataract surgery can be done.

Understanding that Charles Bonnet syndrome is not a mental health issue may help you live with it. It may also help to know that for most people, the visions stop within 12 to 18 months.

Living with Charles Bonnet syndrome

There are some things you can do that may help to make the visions stop:

• closing your eyes
• blinking
• moving your eyes — from left to right and up and down

Changing your environment can also work. You can try:

• switching on the lights
• changing positions

Other things you can do:

• Visit your eye specialist so they can continue to monitor your vision.
• Use visual aids — such as a magnifier for close work. Contact your local low-vision rehabilitation service provider for assistance.
• Stimulate your brain and senses — by listening to a talking book, exercising or even doing some gardening.
• Socialise or join a support group — having visitors to your home and telephone calls count.
• Reduce stress and anxiety — as this tends to make the condition worse.

Talk to your doctor about repetitive transcranial magnetic stimulation (rTMS). This is a relatively new treatment that can reduce brain activity.

Can Charles Bonnet syndrome be prevented?

You cannot prevent Charles Bonnet syndrome from developing.

Complications of Charles Bonnet syndrome

Despite being first reported in 1760, Charles Bonnet syndrome is still largely unknown by many health professionals.

You can give your doctor a copy of the Royal Australian and New Zealand College of Ophthalmologists (RANZCO) position statement on Charles Bonnet syndrome.

Sometimes, Charles Bonnet syndrome can make it more difficult to get around.

Resources and support

You can get more information and support from the following:

• The Charles Bonnet Syndrome Foundation — call 1300 121 123.
• The Macular Disease Foundation Australia has information on macular degeneration and Charles Bonnet syndrome — call 1800 111 709.
• Vision Australia provides low-vision services throughout Australia — call 1300 84 74 66.

If poor eyesight is making you feel alone and sad call Beyond Blue on 1300 22 4636.

The Charles Bonnet Syndrome Foundation also has information in languages other than English.

You can also call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available to speak with 24 hours a day, 7 days a week.