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Charles Bonnet Syndrome


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18 replies to this topic

#1
Snowy

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Morning all.

Today I spoke to Gill Hebbar my key worker at the Royal Liverpool and asked her about the embossed grey and silver abstract pictures I am seeing over everything. She explained that it sounds like Charles Bonnet Syndrome.

http://en.wikipedia....Bonnet_syndrome

Apparently it is something that people with vision loss suffer.

It is not helping my vision, and is like abstract scrambled embossed pictures, of flowers, plants, leaves, faces, shapes, all flickering and in grey/silver. When I close my good eye it's all I can see at night, and when I open my 'good' eye I can see it over everything I look at particularly when it's a blank wall or tv screen or dark room, or outside at night.
The more busy the picture I am looking at, for instance when I'm outside, the less the embossed pictures. Even sitting here looking at the computer screen I can see it all over the screen, and the more I look at the screen the worse it becomes and therefore the more difficult it is for me to read what I am typing.

Apparently it may go, or it may be with me for years.

I know that some of you who have had their eye removed have also experienced the same thing.

Can those of you who have had CBS tell me when you lost your sight and when it started and when it went or whether you still have it?

There is very little information from sufferers about this condition and I think we need to start finding out a bit more about it. :)

Thankyou everyone.

Enucleation Liverpool University Hospital October 2012 11x9mm Malignant Choroidal Melanoma.

Sufferer of Charles Bonnet Syndrome since October 2012.

30 cm Ovarian Tumour Borderline with rare cells April 2008.

2013 Skin Cancer malignant melanoma Stage 0 removed and prognosis good.


#2
Sheila

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Hi I have heard about the Charles Bonnett syndrome, I read about a lady who saw people from the past in bonnets and old fashioned outfits. Oliver Sachs has written a good book in The Mind's Eye about similar.

Sheila

#3
marc

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After the proton beam I saw big balls of light come hurtling towards me- at first I used to duck. I also saw things like branches over the top of what I was seeing but never anything like you describe.

Its 6 years in Jan since my radiation- I just seem dim balls of light occaisionally now - they tend to come in groups. Nothing for months then a few bursts of activity then nothing I hardly notice them now.

Since I had the vitrectomy and the cataract done my vision has been stable.

Lesley

#4
KeithT

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Snowy
The only things I know about CBS are on the internet however, I am a member of the Macular Diseases Society. They are a charity working for those of us with macular problems.
They have local groups who are very active and it may be worth your contacting them and meeting your local area group.
I am a member of the Manchester group and I recall at the last meeting one person saying that she suffered CBS

The MD society is funding research into the condition. It is referred to here:-

http://www.maculardi...=Hallucinations

Another aspect of the Society is that they use technology to a very high degree and very effectively. When I first met them I was unaware that they were all registered blind or partially blind.
Early next year the M/C group intends to have a session with an Apple specialist on beneficial Apps to be used on iPods etc. many of these are free.

If you have an iPod you can call at any Apple retail shop and have free sessions on the most suitable Apps for the poor or partially sighted. In addition, you can book a one to one session free of charge where they will explain and demonstrate them. Apparently, it is very likely that the demonstrator will be someone with vision impairment.

I am just at the stage of throwing myself into the 21st century, ditching my crank handled phone and getting one of them newfangled things.
My wife says I never finish anyth

I don't need the internet, - my wife knows everything.
.
"The Eye Cancer Forum is not associated with or endorsed by OcuMel UK. My postings on this site are my own and posted in a personal capacity. They do not necessarily represent the opinions, views, or objectives of OcuMel UK".

#5
Snowy

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Thankyou Sheila, Lesley and Keith.

Keith, I contacted the Macular Society and spoke to a lovely lady. She said my symptoms were most definitely CBS and I should contact a Dr Dominic Ffytche at Kings College Hospital who has being doing research on it for years. She said I was very young compared to most people who experience CBS and he'd probably be interested in speaking to me.

So I sent him an email, and he replied today! This is what he said.

Dear Mrs *****,

Many thanks for your email. I am very sorry to hear about the events of the last few months.

I can offer you some re-assurance that the visual experiences you now have are a normal adjustment of your brain to the very sudden loss of vision from your right eye after the operation. The visual parts of your brain will compensate for this over time and there is every likelihood you will find the pictures (visual hallucinations) improving, if not disappearing entirely, in the coming weeks and months. You have already identified some of the things that make the hallucinations worse (dim light, plain background and before sleep) and you may also find that shading or closing your left eye brings them on. The mainstay of treatment is re-assurance that the experiences are normal and will go away eventually but for some people they can be so troubling that medication is required. Your team in Liverpool would be the best people to advise on this but I am happy for them to contact me if need be. There are also specific eye exercises that may stop the hallucinations briefly but you would need to wait until your operation has healed before trying this.

With regards helping my research, I do not often get the opportunity to talk to someone while their hallucinations are still occurring and it would be very helpful for me to learn more about your experiences. If you are happy for me to telephone, please suggest some times that would be convenient for me to call.

Yours sincerely,

Dr Dominic ffytche

Wasn't that nice of him? I've given him some times to call me. :)

Enucleation Liverpool University Hospital October 2012 11x9mm Malignant Choroidal Melanoma.

Sufferer of Charles Bonnet Syndrome since October 2012.

30 cm Ovarian Tumour Borderline with rare cells April 2008.

2013 Skin Cancer malignant melanoma Stage 0 removed and prognosis good.


#6
Snowy

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Sheila, I've seen Gargoyles in my hallucinations, and this is quite common according to Dr Ffytche.

Very strange, they arn't frightening because they disappear and another picture takes it's place almost immediately.

Enucleation Liverpool University Hospital October 2012 11x9mm Malignant Choroidal Melanoma.

Sufferer of Charles Bonnet Syndrome since October 2012.

30 cm Ovarian Tumour Borderline with rare cells April 2008.

2013 Skin Cancer malignant melanoma Stage 0 removed and prognosis good.


#7
marc

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Sheila, I've seen Gargoyles in my hallucinations, and this is quite common according to Dr Ffytche.

Very strange, they arn't frightening because they disappear and another picture takes it's place almost immediately.


Now seeing Gargoyles- that I do know about. I see distorted terrified human faces if I take codeine morphine, dihydrocodine , oxycontin - something southampotn gave me after the ablation - Christine might remember what it was she had same tabs after her liver resection. I m not scared just dont like to shut my eyes as they are clearer then. They are contstantly changing sort of a different face thrusting itself into my attention. If I take more painkiller then the faces get bodies a bit like ring Wraithes and it seems harder to hold on to the fact that they dont exist.

Not the same but similar in some ways. I would hate to have it all the time. Thats why I avoid pain killers when I m in pain. The pain is easier in some respects although ablation was pretty awful pain wise (I did get a few complications but it has made me wonderfully well)

Dr Ffytche sounds very good . Well found Snowy. I m sure this will be useful to people in the future.

#8
Popeye44

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Now seeing Gargoyles- that I do know about. I see distorted terrified human faces if I take codeine morphine, dihydrocodine , oxycontin - something southampotn gave me after the ablation - Christine might remember what it was she had same tabs after her liver resection. I m not scared just dont like to shut my eyes as they are clearer then. They are contstantly changing sort of a different face thrusting itself into my attention. If I take more painkiller then the faces get bodies a bit like ring Wraithes and it seems harder to hold on to the fact that they dont exist.



What do you have for your bedtime reading Lesley?

E&OE

All comments herein are purely personal views or opinions or expressions of personal experiences. Any actions you may take are of your own volition. No views expressed herein represent the views of or bear any relationship to official policy of any organisation.


#9
marc

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Titter Titter- I was only reading about immune effects of radiation and genetics in those days.

Now its a different story.

Just finished Bacchae

and about to start the first 5 books of the Aeneid. So I hate to think what I will see if opiates are ever again wafted under my nose.

#10
KeithT

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Is this Classic chiclit? :rolleyes:
My wife says I never finish anyth

I don't need the internet, - my wife knows everything.
.
"The Eye Cancer Forum is not associated with or endorsed by OcuMel UK. My postings on this site are my own and posted in a personal capacity. They do not necessarily represent the opinions, views, or objectives of OcuMel UK".

#11
Popeye44

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whatever floats your boat I guess!

E&OE

All comments herein are purely personal views or opinions or expressions of personal experiences. Any actions you may take are of your own volition. No views expressed herein represent the views of or bear any relationship to official policy of any organisation.


#12
Snowy

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Just an update on my communications with Dr Dominic Ffytche, he called me on Monday and we had a long conversation.
He was very interested in my CBS as it's almost the reverse of what someone with Macular Degeneration gets and he said it was quite rare. They usually have a gradual appearance of the pictures, starting with spots and blobs and working up to abstract pictures. Where as I have a complete mass of abstract pictures all the time over everything, it's constantly moving, like a ghostly 3d abstract picture. As quickly as I see a bird or an animal it morphs into something else. It means I can't read anything very well, as it covers everything like a piece of thin lace or like a kaleidoscope. I drew a sketch for him to show him what I was seeing and scanned it and he wants to use it in his lectures!
He hopes that is will gradually decrease in format over the next year or so and I'm to keep him informed how things are going.
What a nice man he was, and it was so nice to discuss my problem with him.
Unfortunately, it means I shall be struggling with my reading and typing and I shan't be safe to drive either.
I do hope it goes as I know my eyesight will be so much better when it does.
Keep everything crossed for me.

Enucleation Liverpool University Hospital October 2012 11x9mm Malignant Choroidal Melanoma.

Sufferer of Charles Bonnet Syndrome since October 2012.

30 cm Ovarian Tumour Borderline with rare cells April 2008.

2013 Skin Cancer malignant melanoma Stage 0 removed and prognosis good.


#13
KeithT

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Snowy

How are you?

Has your CBS eased off?

Keith


My wife says I never finish anyth

I don't need the internet, - my wife knows everything.
.
"The Eye Cancer Forum is not associated with or endorsed by OcuMel UK. My postings on this site are my own and posted in a personal capacity. They do not necessarily represent the opinions, views, or objectives of OcuMel UK".

#14
Snowy

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Hi Keith,

thank you so much for asking. It's good to see you still here. I have popped back in today, to wish you all a very good Christmas, I think about you all a lot.

 

I am sadly 2 years on from my enucleation and STILL suffering with Charles Bonnet Syndrome 24/7, it only goes when I fall asleep and my brain shuts down, as soon as I wake and my brain wakes it is there again. It covers the whole of my vision, in a fine shimmering, morphing abstract picture, of thousands and thousands of tiny faces, animals, cartoon like characters etc etc and there has been no real change and certainly no improvement. I am learning to live with it, but it is very difficult and I have regular melt downs.

I've tried anti psychotic drugs but nothing so far has worked. I struggle to go out on my own, as I suffer badly with vertigo, and depth perception problems, and because of the CBS life is quite difficult. I lost a lot of my confidence and feel quite vulnerable on my own. I find it easier to go out with my husband as I can hold his arm, to help with my balance.

 

Recently, I was referred to a Neuro Psychiatrist, and he in turn has referred me to a doctor at the University of Kent, and they want me to start a trial using Neuro Stimulation to see if they can get rid of the CBS.

My brain is sending signals to my visual cortex which in turn is sending these made up pictures down the optic nerve of my left eye (as it doesn't understand where my right eye has gone) and these pictures are being 'played' over my vision.  

The trial should have started in November this year, but has been delayed, I am seeing the Neuro Psychiatrist Consultant in January and will find out what is happening then. Keep your fingers crossed for me, though I've been told not to get my hopes up.

Even though it is a struggle at times, I'm still getting on with my life and consider myself very lucky, and enjoy helping with my grandsons and we have a new grand daughter due any day now, so I'm not grumbling! Life is good. And I do have Life, so think myself very lucky.

I hope you are all well and coping with all that life has thrown at you?


Enucleation Liverpool University Hospital October 2012 11x9mm Malignant Choroidal Melanoma.

Sufferer of Charles Bonnet Syndrome since October 2012.

30 cm Ovarian Tumour Borderline with rare cells April 2008.

2013 Skin Cancer malignant melanoma Stage 0 removed and prognosis good.


#15
Popeye44

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Hello Snowy ... Season's Greetings to you and yours also.

 

Sorry to hear that the CBS is still impacting things for you. I have a dead right eye - light/dark & occasionally hand movements only - which is probably on its last legs so enucleation is the next step for me. I need to research what happens to the remainder of the optic nerve when it's left "flailing around". Balance can be a common issue also, with the loss of binocular vision. Balance is a combination of feedback via vision and the inner ears.

 

I know that grand-children can be an enormous distraction but entertaining in so many different ways!

 

Best

 

David


E&OE

All comments herein are purely personal views or opinions or expressions of personal experiences. Any actions you may take are of your own volition. No views expressed herein represent the views of or bear any relationship to official policy of any organisation.


#16
marc

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Hi Snowy,

 

thanks for dropping buy, yes Charles Bonnet syndrome sounds pretty awful.  Have a happy Christmas and post when you can to let us know how you are

 

Lesley



#17
Snowy

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A very Merry Christmas to you both David and Lesley good to see you.


Enucleation Liverpool University Hospital October 2012 11x9mm Malignant Choroidal Melanoma.

Sufferer of Charles Bonnet Syndrome since October 2012.

30 cm Ovarian Tumour Borderline with rare cells April 2008.

2013 Skin Cancer malignant melanoma Stage 0 removed and prognosis good.


#18
KeithT

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Hi Snowy

Sorry I seem to have missed your earlier posts.

Your CBS is obviously most unpleasant and I hope that you can get an early solution.

Did Dr Ffytche not come up with any further guidance?

 

I retain some vision in my affected eye but for several months in low light conditions I have noticed vertical 'fluttering ribbons' and occasional vague figures on the periphery which I feared might be CBS related but nothing remotely close to what you have experienced.

 

Best wishes for a happier New Year.

 

Keith


My wife says I never finish anyth

I don't need the internet, - my wife knows everything.
.
"The Eye Cancer Forum is not associated with or endorsed by OcuMel UK. My postings on this site are my own and posted in a personal capacity. They do not necessarily represent the opinions, views, or objectives of OcuMel UK".

#19
KeithT

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Hi Snowy

It is quite some time since we were in touch.

Have you had any relief from your CB problems?

My "floaty ribbons" still come and go along with irritating blue bottle fly-like spots which have become more frequent but I doubt that they are the result of CBS.


My wife says I never finish anyth

I don't need the internet, - my wife knows everything.
.
"The Eye Cancer Forum is not associated with or endorsed by OcuMel UK. My postings on this site are my own and posted in a personal capacity. They do not necessarily represent the opinions, views, or objectives of OcuMel UK".




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