CHARLES BONNET SYNDROME: MY MOTHER RACHEL... - Macular Society

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CHARLES BONNET SYNDROME

yvonnebeni
yvonnebeni

MY MOTHER RACHEL HAS CHARLES BONNET SYNDROME AND TOOK IT CHRISTMAS AND HAS NOT BEEN THE SAME SHE SEE ANIMALS AND ALL SORTS OFF PEOPLE AT ALL TIMES OFF DAY BUT AT NIGHT WHEN IN BED ITS MORE FRIGHTING SHE SEES LOTS PATTERN AND COLOURS

AND BLACK DUST COMING IN SHE SAYS THAT IS ALL THE PEOPLE COMING IN HAS ANYONE HAD THIS THANK IF YOU CAN ANSWER MY POST X

4 Replies
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Hi. The macular society has info and help on this. Google their website and give them a call. They will help you and your mum. Sending her a hug x

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By all accounts it can be a disturbing experience with no treatment but I understand that it does clear eventually usually, within 18months but often in a much shorter timescale.

It is NOT a mental health problem or alzheimers.

Have a look too at the NHS site which covers this problem specifically. It suggests that some drugs might help.

This is perfectly normal for someone with Mac Deg. Altho distressing it is not a sign of dementia or mental health problems! It is the brain that is over compensating for the eyes. It's not even an eye problem. Because the eyes are not seeing what is there (clearly) the brain "fills in the holes" It creates an illusion that looks very real. My mother sees children a lot. They climb all over our furniture. Sometimes there's a big red bus in front of the TV!!! Patterns & colours too. Our wallpaper often goes walk about. Please tell your mum not to be frightened by this. The Macular Society or RNIB will offer additional info to you but unfortunately there is no cure. However once she understands what is happening, it may not be so bad. Best wishes.

Rosalyn-helpline
Rosalyn-helplineAdministrator

Dear yvonnebeni,

A high proportion of people with some form of sight loss have experienced visual hallucinations at some stage. These visual hallucinations are known as Charles Bonnet Syndrome. What differentiates Charles Bonnet from other types of hallucination is that they only affect the sense of sight. No other senses should be involved. Therefore the individual should not be able to hear, smell or interact with the hallucinations. This is not a mental health or psychological problem. It is purely related to the fact that there is damage to the eye.

I am copying a link to our booklet on Visual Hallucinations:

macularsociety.org/sites/de...

Just to make you aware that we do have a free telephone counselling service. Our counsellors are fully trained and the majority have sight loss themselves. Referral is via us on the helpline and it takes a counsellor a maximum of a week to make the initial call. They are used to talking about Charles Bonnet. Sessions consist of approximately 6 of around 45-50 minutes each. We need the individual’s verbal consent in order to be able to refer them:

macularsociety.org/sites/de...

The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

help@macularsociety.org

Kind regards,

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