Blind and Visually Impaired Community
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Charles Bonnet Syndrome (Visual hallucinations) (self.Blind)
submitted by CVRTCOMSCATIS
I searched the sub and saw CBS has not been discussed for 3 years. I try to educate as many as I can because it can be scary if it develops, but understanding it typically makes it for less scary.
$1 is the condition where people experience visual hallucinations as a result of vision impairment later in life.
My anecdotal experience is that CBS is FAR under reported. Mostly because people are afraid that hallucinations equate to a mental health issue. It’s not!! It’s the result of reduced visual stimulus.
Oliver Sacks has a great $1 about it I highly recommend.
Don’t be afraid to discuss here, with family, friends, your doctor or rehab therapists.
E2: words
$1 is the condition where people experience visual hallucinations as a result of vision impairment later in life.
My anecdotal experience is that CBS is FAR under reported. Mostly because people are afraid that hallucinations equate to a mental health issue. It’s not!! It’s the result of reduced visual stimulus.
Oliver Sacks has a great $1 about it I highly recommend.
Don’t be afraid to discuss here, with family, friends, your doctor or rehab therapists.
E2: words
KillerLag 4 points 4y ago
http://www.cnib.ca/en/your-eyes/eye-conditions/Pages/Charles-Bonnet-syndrome.aspx
It is fairly common, with some studies indicating as many as 20% of people experience it. Definitely people don't talk about it often, although it has gotten a bit better in the last few years.
It is fairly common, with some studies indicating as many as 20% of people experience it. Definitely people don't talk about it often, although it has gotten a bit better in the last few years.
CVRTCOMSCATIS [OP] 1 points 4y ago
Haha! We picked the same link about CBS, I just embedded mine. Have you see the Sacks video? I play it for clients and families often (for people without vision there’s really nothing to see in the video. It’s just Oliver Sacks sitting on a stage).
I try to remember to bring it up to everyone. As a community I think we’re getting better about educating and talking about CBS. My experience is that everyone says no at first then when I explain it (including it happens more often to people with higher levels of intelligence) then they’re more comfortable saying they have experienced it.
I try to remember to bring it up to everyone. As a community I think we’re getting better about educating and talking about CBS. My experience is that everyone says no at first then when I explain it (including it happens more often to people with higher levels of intelligence) then they’re more comfortable saying they have experienced it.
KillerLag 2 points 4y ago
I don't always bring it up with everyone, but I ask them what they can/can't see and try to subtly find out if there are unexpected things they are seeing. Culturally, some people don't like to bring it up or get extremely embarassed/defensive (especially some family members)
CVRTCOMSCATIS [OP] 2 points 4y ago
Culturally, some people don't like to bring it up or get extremely embarassed/defensive (especially some family members)
That’s one of the benefits of Oliver Sacks’ TED talk. It explains the disorder in a scientific but relatable way. Of course it won’t break through some cultural biases/taboos but I’ve never had a client or family member upset by watching the video.
That’s one of the benefits of Oliver Sacks’ TED talk. It explains the disorder in a scientific but relatable way. Of course it won’t break through some cultural biases/taboos but I’ve never had a client or family member upset by watching the video.
KillerLag 1 points 4y ago
Heh, you've been lucky so far, then. I've had some family members who have had a very hard time handing someone's vision loss. One of my clients is a kid (7 years old), and his grandmother refuses to believe he has vision loss, to the point of taking away his cane. Absolutely refuses to talk to anyone about why a cane is useful (language barrier also an issue, but she refuses to talk to people who also speak the same language).
impablomations 3 points 4y ago
I'm fairly lucky with my CBS in that it's just colours and patterns (sort of like living in a kaleidoscope) and it's only really troublesome in low light conditions when it leaves me essentially 100% blind.
>My anecdotal experience is that CBS is FAR under reported. Mostly because people are afraid that hallucinations equate to a mental health issue.
I think it's also partially down to it not being a commonly known condition, even amongst health professionals. My neurologist never even made mention of it when I described the symptoms after my stroke, it was my ophthalmologists assistant who identified it.
>My anecdotal experience is that CBS is FAR under reported. Mostly because people are afraid that hallucinations equate to a mental health issue.
I think it's also partially down to it not being a commonly known condition, even amongst health professionals. My neurologist never even made mention of it when I described the symptoms after my stroke, it was my ophthalmologists assistant who identified it.
CVRTCOMSCATIS [OP] 1 points 4y ago
I absolutely agree! It should be more commonly known by eye care, rehab professionals, neurologists, and people with vision impairment. I’m had you’re ophthalmologist assistant identified it for you.
Thanks for sharing your experiences.
Thanks for sharing your experiences.
AllHarlowsEve 3 points 4y ago
I've done a couple casual AMA's about it, since mine seems... atypical. All the things I see tend to be horrifying in some variety, or evoke instant fight or flight responses, even after 5 years.
In one of the AMA's I did about it, someone said their aunt had it, and would see stacks of stones, for some reason.
In one of the AMA's I did about it, someone said their aunt had it, and would see stacks of stones, for some reason.
CVRTCOMSCATIS [OP] 1 points 4y ago
Gosh I’m sorry your visions are startling and scary! Usually they are more mundane. I’ve heard rocks, colored geometrics, and people most often.
I had only searched this sub so I missed your ama. Thanks for sharing your experiences! I also saw some other posts about CBS. I’m new to Reddit and just wanted to keep spreading the word. It always hurts my heart when someone thinks they’re “going crazy” and is afraid to talk about it.
I had only searched this sub so I missed your ama. Thanks for sharing your experiences! I also saw some other posts about CBS. I’m new to Reddit and just wanted to keep spreading the word. It always hurts my heart when someone thinks they’re “going crazy” and is afraid to talk about it.
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