Charles Bonnet

Hi the Optician as just told me I've got Charles Bonnet Syndrome but she it normally occurs in people a lot worse eye sight than me. I do bad eyesight but my distance is not bad I have glasses but I can drive, watch television without them, I only wear them if I'm going to do a lot of driving etc. so my eyes don't get tired to quick. My reading vision is getting worse and do need them with me most of the time. I have got a cataract in both eyes and it is this I need distance glasses for.

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  • Hi Jeff. Have you seen the Macular Society website? They have info on the condition and an excellent helpline . Good luck .

  • Sorry to hear of this. CB seems to be transient for most people but can last for around 18 months. There is a doc researching this who welcomes the opportunity to talk to sufferers. I could probably find his details given a little time.

  • That seems odd indeed, Jeff, though I had similar experiences for a while - like seing a spider crawling along the floor from the corner of my eye and when I looked closely, there was nothing there. But at the time my VA was 20/80 in L eye with wet AMD and 20/40 in R eye with dry AMD and a rather more advanced cataract. The spider always came from the corner of my R eye (good eye?) So it had possibly something to do with the cataract. I have not seen any spiders lately, though the vision in my R eye is now 20/50.

    I am just wondering if it is not risky driving when things suddenly appear that are not really there? Does it ever happen when you are driving? Please do take care.

    All the best

  • I thought driving might be a problem in the beginning but I have never seen anything outside the house, so at the moment I'm going keep driving and keep my job. I mean at the moment I've still got to go to the Hospital for further investigation. They might find it is something to do with my cataracts but they where found some 2 years before I started to see things. So its a just wait and see what happens. I do know one thing I never anything when I'm waiting for something to happen.

  • Dear JeffMett,

    I am copying links to our booklets on Driving and Visual Hallucinations:

    macularsociety.org/sites/de...

    macularsociety.org/sites/de...

    It is important that you check with your optician if you are still within visual acuity guidelines to drive. The DVLA have a strict cut off point.

    In terms of 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.

    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. Referral is via us on the helpline. We need the individual’s verbal consent in order to be able to refer them.

    The following is the link for our Emotional impact booklet:

    macularsociety.org/sites/de...

    In addition, this is the link for our Cataracts factsheet:

    macularsociety.org/sites/de...

    Just to make you aware, we are currently offering free 6 month membership. This is a good way to keep up with current developments. Please ring us if you would like to benefit from this, or join via the following link:

    macularsociety.org/6months

    Please do not hesitate to contact us if we can be of any further help.

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

    Kind regards,

  • But the optician says I am ok to drive because my eyesight is good enough on distance vision and only really need glasses for reading, she also said that somebody with my vision should not be able to get Charles Bonnet and I had got to go the hospital for further investigation. I have only ever had visions in the house and know instantly that they are not real and don't worry if I thought that I was a danger to anybody else I would inform the DVLA as I did in the past but that is another story and nobody else needs to know, and the DVLA as given a clean license back.

  • Dear Jeffmett,

    It may be easier to give us a call on the Macular Society helpline. It is easier to discuss things in more detail.

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

    Kind regards,

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