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When Hallucinations are a normal part of sight loss.

12 Jul 2016

Logo For Esmes UmbrellaDo you ever see something which could not possibly be there?  Is the hallucination clear and vivid – despite your own low vision? If so, you may be suffering from Charles Bonnet Syndrome. 

CBS can develop when a person loses 60% or more of sight - through any type of eye disease or accident - and the Syndrome brings with it visual hallucinations.  These range from disturbing to frightening and too many people are suffering in silence because they, mistakenly, fear that the hallucinations herald dementia.  This is emphatically not so.  CBS is entirely to do with the brain ‘filling in the blanks in your sight’ and has no link to dementia.

Sufferers report seeing words, geometric patterns or trellis-work, which covers everything.  Others see dogs – both benign and snarling - flowers, insects, birds, snakes, worms, and frogs. People appear, either Lilliputian or normal size, sometimes dressed in costume – Edwardian or Victorian – and sometimes with distorted faces. Water – in oceans or rivers – features often, as do buildings.  Sometimes the whole room can transform into somewhere completely different.

It is important to remember that CBS hallucinations are silent.  If any of the other senses is involved -  hearing, touching, smelling or tasting – it is not CBS.

At the moment, there is no magic medication to dispel the hallucinations.  Reassurance and coping strategies are all we can offer. Some people manage their condition very well but others find the hallucinations take over their lives and become intolerable. 

This happened to my late Mother, Esme, for whom CBS had been a part of her life for many months before she told me what she was experiencing.  I diagnosed CBS from a paragraph in a newspaper, but there was no help available. As her eyesight diminished, her ophthalmologist neglected to warn her and both her GP and Optometrist were unaware of the Syndrome. No help was available and, as I watched Esme being tormented by her ‘visions’, I began to plan an awareness campaign.

Last November, with the help of Dr Dominic ffytche (from King’s London) who is the lead researcher and globally acknowledged expert on CBS, ‘Esme’s Umbrella’ was born, with an event at The House of Commons.

We have a website; an email address esmesumbrella@gmail.com and a Helpline (courtesy of the Help and Information Service) 0345 051 3925.  Our website carries a printable explanatory leaflet, useful for the GP or Care Home staff; coping strategies; and the research work of Dr ffytche.  My aim is to raise awareness within the medical profession and out into the community; to persuade ophthalmologists, GPs and optometrists to warn their patients; and to combat mis-diagnosis. 

If you are seeing ‘visions’, please confide in someone.  Do not suffer in silence.

If you would like to add your experience to our website, start a support group, or have any ideas about spreading the word, please contact me. 

by Guest Writer Judith Potts