CB syndrome

[YJ14]

l have recently found out that l have Charles Bonnet syndrome , it seems Consultants do not wish to talk about it as it is not in their field. I have lines, coloured patterns,and red , yellow and blue like mesh along with hallucinations! Not pleasant. Perhaps someone can tell me how they cope with this? Signing off Yj14

[Helen_GlaucomaUK Administrator]

Hi YJ14. If I have recently spoken to you, I apologise for repeating this information. Hopefully someone will reply to you with their experience. I realise that these hallucinations can be very frightening.

There is a charity called Esme's Umbrella, who specialise in all things to do with Charles Bonnet syndrome. There are techniques they will be able to help you do, to stop the hallucinations when they happen. Tel: [phone] or email [e-mail]

[Toby_from_London]

Hi YJ14,

I'm sorry I can't offer any solutions but just to say I did ask my consultant about the patterns I can see in my untreated eye, which has no vision due to late diagnosis (I was shielding during COVID and medical intervention was too late), and while normally excellent, he did sidestep this particular question.

It wasn't until much later on that I came across an article about Charles Bonnet syndrome, which I previous didn't realize existed.

So you're not alone. You've done the right thing by reaching out and I wish you well.

[YJ14 in reply to Toby_from_London]

Hello Toby. Thank you for reply. I now know I have had fhis CBS for 2 years without knowing what it was, now l feel better about it although there is no cure. It gets worse if l am stressed so l try to keep calm

[Toby_from_London in reply to YJ14]

Take care 🙂

[muddledme]

Hello YJ14,

Although I do not have C.Bonnet, I think my Mum probably had it.

Did you know about the excellent Glaucoma UK webinar which was live on 3.11.22 ? Such a good speaker , this is available now on line .

If you google 'Glaucoma UK digital webinars you tube' you will find many past webinars and the Living with Glaucoma Charles Bonnet syndrome is amongst them.

Best wishes