Managing CBS.

We understand that navigating visual hallucinations and their impact can be overwhelming, but here you’ll find some techniques that can help you to take control of your experience.

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Firstly, what can make it worse?

  • illustration of social distancing

    Isolation

    Isolation can worsen CBS symptoms as reduced social interaction and sensory stimulation might lead to an increased focus on hallucinations and heightened feelings of distress.

  • illustration of stress

    Stress

    Stress can amplify CBS experiences by triggering the brain to create more vivid and frequent hallucinations in response to heightened emotional states.

  • illustration of medication

    Medication for other conditions

    Urinary incontinence medication (Oxybutynin),
    Anti-cholinergic eye drops (Atropine eye drops),
    Tricyclic antidepressants (Amitriptyline),
    Proton pump gastric ulcer medication (Lansoprazole),
    Synthetic opiates (Tramadol)

  • illustration of a man with a fever

    Fever

    Fever can intensify CBS symptoms as the body’s elevated temperature can impact neural activity and sensory processing, potentially leading to heightened visual hallucinations.

  • Hyponatremia

    Hyponatremia

    Hyponatremia, an electrolyte imbalance characterised by low sodium levels in the blood, can worsen CBS by affecting brain function and neural signaling.

What to do when symptoms start

Not everyone with Charles Bonnet Syndrome needs treatment for the hallucinations. Once you know that the hallucinations can be a normal consequence of visual loss and that there are things you can do yourself that might help stop the hallucinations when they occur or reduce their impact, for most people this will be all that is required. However, before using self-help techniques, it is important to confirm you have Charles Bonnet Syndrome and rule out other factors that might be contributing to the symptoms. 

There is no test for Charles Bonnet Syndrome so your doctor needs to think about whether other possibilities apply to you.  The current recommendations are that your doctor thinks about physical health conditions that can cause hallucinations (for example infections), whether your eye condition can be improved (for example cataract surgery or macular disease treatment if you have these conditions) and for those over 60 years old, early memory problems.  This may involve referral to a specialist service to advise. 

Your doctor also needs to think about medications you are taking for other reasons that may be making the hallucinations worse and whether they can be changed or reduced in dose. The main medications we know that might make CBS worse are listed here (Culprit medication link).      

Please contact your GP before using any complementary therapies and only stop taking medication when you have discussed this with your doctor.

Medications that are based on evidence from clinical trials or published case reports.

This selection of medications are backed by clinical trials and documented case reports. These options provide a potential avenue to alleviate distressing experiences, but consultation with a medical professional is important to determine the right approach for your individual needs.

  • illustration of a pill

    Anti-convulsant (like Gabapentin)

  • illustration of drug

    Cholinesterase inhibitor (like Donepezil)

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    SSRI (like Citalopram)

  • illustration of a drug prescription

    Anti-psychotic (like Risperidone) – not suitable for older patients

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    Chinese traditional medicine (like Yi-Gan-San)

Self-help techniques and coping
strategies anyone can use

These strategies, suggested by fellow CBS individuals, might offer relief, although results can vary. Additionally, individuals have reported symptom relief through certain medications or complementary approaches. While effectiveness varies, we can’t assess suitability for all due to limited medical context. Note that medications with published case reports or clinical trials carry more robust evidence.

CBS hallucinations often arise during moments of quiet wakefulness or specific scenarios like pre-sleep and post-sleep stages, seated positions, or car rides. Identifying trigger situations can guide avoidance tactics.

  • switch button illustration

    Change whatever it is you are doing at that moment – e.g. turn off/on the television/radio/music

  • up and down

    If sitting, try standing up and walking round the room. Or the reverse

  • illustration of an opened door

    Walk into another room or another part of the room

  • illustration of an eye

    Eye movement exercise (see below)

  • lightbulb, illustration of an idea

    Change the light level in the room. It might be that the dim light is causing the hallucinations. If so, turn on a brighter light – or vice versa

  • illustration of a finger clicking

    Reach out to the hallucination. Try to touch it or sweep your hand to brush away the image

  • hands dusting illustration

    Clap your hands or click your fingers

  • torch illustration

    Shine a torch upwards from below your chin in front of your eyes – not into the eyes

  • illustration of a head

    Turn your head slowly to one side and then the other. Dip your head to each shoulder in turn

  • cartoon eyes

    Stare straight at the hallucinations

  • illustration of a person singing

    Try singing or whistling

  • illustration of a sleeping mask

    Use a very thick eye mask to try and stop the hallucinations

  • eyes closed illustration

    Blink your eyes once or twice.

  • illustration of drugs

    People with CBS have reported that Prochlorperazine helped their symptoms

  • icon of omega 3 fatty acid

    Omega 3 has helped reduce hallucinations in people with CBS

  • illustration of essential oil

    CBD oil has helped people with CBS alleviate their symptoms

  • illustration of ginger

    Ginger has helped people who suffer with CBS

  • illustration of a person meditating

    Guided meditation can be good coping strategy

  • illustration of buddhist yoga pose

    Yoga can help alleviate symptoms of CBS

  • illustration of two persons sitting and talking

    Counselling is helpful for people with CBS

  • illustration of a group of people chatting

    Group Therapy can be a supportive environment to deal with CBS

Professor ffytche’s specific eye movement exercise

When the hallucination starts, look from left to right about once every second for 15 seconds, without moving your head. If the hallucination continues, have a rest for a few seconds and then repeat the eye movements. You may need four or five repeats of the eye movements to have an effect but there is no point in continuing beyond this if there is no benefit.

Esme’s Friends

These are support groups hosted by local low vision charities or the RNIB. They offer people who live with Charles Bonnet Syndrome – and their families – the chance to exchange experiences and share coping strategies.

Contact Esme’s Umbrella for a list of groups or the RNIB on 0303 123 9999.

Pop-up Esme’s Friends’ days are planned.

 

When Charles Bonnet Syndrome becomes a problem

For most people the approaches above are all that is needed but for some, Charles Bonnet Syndrome becomes so distressing and unpleasant that other treatments need to be given. Currently, there is no Charles Bonnet Syndrome-specific medication but, if the visual hallucinations are intolerable, there are several types of medication that can be tried. They are all designed for other medical conditions but have been shown in clinical case reports or small clinical trials to be effective in CBS even if you do not have the condition the medication is usually used for. The main types of medication used for Charles Bonnet Syndrome are listed here (Link to Charles Bonnet Syndrome Medication page). A study at Newcastle University shows that the occurrence of CBS hallucinations can be significantly reduced by the use of a non-invasive electrical brain stimulation technique that makes the visual parts of the brain less excitable although this is not yet available for routine clinical use. 

GPs and other healthcare professionals may not be aware of CBS and would welcome the information on this website.

Illustrations from
people who live with CBS

  • Gareth Brookes

  • Gareth Brookes

  • Melanie Shee

  • Melanie Shee

  • Melanie Shee

  • Melanie Shee

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