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I have joined this group because I was recently diagnosed with CBS Charles Bennet Syndrome and I'm wondering if anyone here has experienced the hallucinations caused by diminished or Macular degeneration. I have no vision in my right eye and had macular edema from cataract surgery in my left (hopefully that is gone). I understand that a lot of people have CBS but are reluctant to talk about it for fear of having dementia or that relatives or caretakers will put them in a home and not believe them.

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  • Hi Fluffy,

    I am so sorry to hear about your Charles Bonnet hallucinations.

    Knowledge of the condition amongst the medical profession is still not as good as it should be and I do accept your comments about dementia similarities. But it is getting better.

    If you haven't seen it yet, please have a look at our booklet on the subject at the following link;

    macularsociety.org/sites/de...

    If you would like to have some printed copies to show friends and relatives and even your GP, please call our helpline 0300 30 30 111.

    You might like to have a chat with our helpline anyway.

    Best wishes

    Andy

  • Thanks Andy for your support and kind words. Are you a part of this organization, a volunteer or caretaker?

    Thanks, Jo

  • Hi Jo,

    I am an employee of the Macular Society and I work on the Society's helpline.

    Glad to be of some help.

    Andy

  • OMG, I have this condition, its so frightening, sometimes I hate closing my eyes. Ive had it for a few months even before I knew I had macular degeneration. I had a second opinion about my macular degeneration and the doctor told me it would get less once the injections kick in. Hugs from Squinty xx

  • Dear Squinty,

    I'm so sorry that you have to go through this. I'm sending warm hugs so that if you have another "vision" you will remember that we are pulling for you and that those visions won't hurt you even though they can be so very scary.

    Take good care,

    Fluffy

  • Dear Fluffy, what a luvly reply, thanks darling I'll be thinking of us when I see all those scary visions. They are not real although they seem it. At first when I had them I thought to myself....Squinty you must cut down on the wine!

  • Hi Fluffy, sorry to hear about your diagnosis. I have hallucinations of some kind fairly regular. The doctor at the hospital said it sounded like Charles Bonnet syndrome. I see things on the blinds, on the floor and on the walls. I also see figures occasionally, and coloured lights. I try to think light of it, we all deal with things differently. Sometimes it does get me down though. I have dry Age related macular degeneration in both eyes, the left worse than the right.

    The Macular Society is very helpful, and everybody is so nice, just like this group, everyone on this group will help, telling their experiences . I wish you well on your journey. Take care 😊

  • Hi Sal2,

    Mine started just recently because I have a blind eye. I see black spiders all over my bedroom and like you, on the ceiling walls and floor. Each day they get bigger and bigger and I wonder where this is leading to. Lol I usually say to them 'go away' rollover and go back to sleep. However, I say if I have to have this why couldn't I have, ponies, flowers, or unicorns rather than huge black spiders. lol. I'm just greatful that I was diagnosed so quickly and not having to endure countless tests and fear of dementia.

    Thanks for writing because it's not something that I can share with just anybody. How long have you been diagnosed ? I wish you smooth sailing and good luck.

  • Hi Fluffy, I was diagnosed with dry amd (early stages) just over a year ago. At the beginning of this year things seemed to progress a bit more. There has been a slight deterioration, and got a priority appt at the hospital where they confirmed it. I go back to the eye clinic in August, but I feel there's a slight change again. We'll see what happens. The sight in my right eye is really quite good, it's the left eye that's the trouble at the moment. I've seen a few nice things as well Fluffy, I saw a beautiful polar bears head looking at me from the wall, also a blue helicopter on the ceiling, also a few other nice things. Sorry to go on but ad you say it's good to talk. Everybody is very good on this group. The Macular Society is great, they can give you a lot of information and advice.

    I wish you all the best for the future, sorry for rabbiting on. Take care 😊

  • Hi Sal2, thanks for writing and I appreciate the chat because I'm not aware of any other people around here with this. You can tell your friends and they are nice, however, I think they still kind of think of me as a freak. Polar Bear, blue helicopter and other nice things. That sounds pretty cool. I'd like to ask you a question if I may. Please don't answer if this is awkward for you ok, here goes. I've noticed that every time, always in the morning, I'm seeing more and bigger black spiders and where they were first just up at the ceiling and down the walls a bit. Now, they are on the floor too and the one on the floor is about 9" diameter. About the size of a large dinner plate.

    Now my question to you is ... Do you have, or have you heard of the picture changing either by something moving or having changed somehow.? I've got an appointment with a neurologist on Monday so maybe he will be able to answer some of my questIons (if he even know about CBS) .

    Thanks for listening to my long winded rant.

    Take car, Fluffy

  • Hi fluffy, I feel lucky not to suffer with cbs , just get the floaters(although sometimes I do think they are bungee jumping spiders lol). Just wanted to send you a hug x

    Not sure if it would help you at all but I do use nip to help me with other issues ,- it basically helps you change the way you think about things - I would not be able to cope with 9" spider on the floor lol and would have to give myself a new way to deal with it.

    Nlp =Neuro linguistic programming. It's not a weird cult thing! Ask your Dr about it x

  • Hi eyesright, thanks for writing it's nice to feel connected with someone who understands the weird things that go on in our lives. I have heard of Nip. When I got my 'certificate' in hypnosis Nip was the next class offered, however, my friend and I decided not to take it, especially since he kind of felt like a car salesman. haha it was good for the first class though. Well, for the first time in 9 days I didn't see my little crawly things this morning which was refreshing to say the least. Maybe if I started naming them I could feel a little bit more friendly to them - though that's hard to imagine. It poured rain here yesterday and it'll be hot today. Tell me some more about your floaters (if you're comfortable talking about them). It seems like it would be difficult to have. Take care and have a good day. Fluffy

  • Oh floaters are nothing interesting Fluffy. Imagine a shaken snow globe but the bits are black not white and quite sparse. They float slowly down across your vision, sometimes sideways. Always seem to get more after an inj. Think they are very common. Don't really cause me a problem unless they are very active when I'm trying to read then just have to let them settle.

    're your spiders - I have a big decorative Halloween spider shiny purple & black with a friendly face - maybe find yourself a similar nice image and your brain may use that when it "sees" them. X

  • Hi eyesright,

    Thanks for your description of your floaters - very clear and easy to understand!

    I like your black spider suggestion and I think I'll add a smile on them too, but then that could be kind of creepy. To have 15 black spiders all smiling at me when I wake up would probably really push me over the edge. haha

    Take care, have a nice day and hugs,

    Fluffy

  • Hi Fluffy, thanks for your reply. I don't mind your ranting's, anything if it helps, it's nice to chat. Sometimes I feel as if it's just me that's imagining things, deep down I know its not, and when you talk to someone who understands, it really helps. I can't really answer your question Fluffy other than to say things do appear larger in the morning than at any other time. I know if I look away and then return to the same spot, it's gone or changed slightly. Sorry I 'm not much help.

    This morning I saw a large dark animal walking on the ceiling, don't know what it was, but you know I was sure it was smiling at me, sounds crazy I know.

    I hope all goes well for you on Monday, and hopefully you'll get some answers to your questions. Sorry I wasn't much help. Take care Fluffy, and Best Wishes. sal2 x

  • Hi sal2, thank you so much for writing to me and helping me to understand some of the craziness going on. From your writing it sounds like you have a good sense of humor and I appreciate that because I think if we can laugh at things sometimes it helps. Your smiling ceiling animal sounds pretty interesting - maybe he/she has a sense of humor too. Today for the first time in about 9 days I didn't have any spiders in my bedroom so that was refreshing. Sometimes I get the feeling that they're watching me but I'm not going over to paranoid (ism) because who needs another crazy. hahaha

    I hope you don't think that I'm ridiculing you because I don't mean to imply that at all. I'm curious, is this the first time the animal has appeared and do the pictures change. I hope so because my black spiders don't feel very welcoming and I could go for something a little more interesting - but then we don't always get what we want do we. And I want to say that you've been a great help - thanks.

    Take care and have a nice day. Hugs, Fluffy

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