Living with Charles Bonnet Syndrome (what I see as a blind person)
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- Опубліковано 16 жов 2024
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I'm Molly, a typical sushi, makeup, and fashion loving millennial girl who just so happens to be blind! I was diagnosed with Retinitis Pigmentosa at just 4 years old and began public speaking at age 5. I started just doing motivational speaking, but now I make videos and even model! Even though I can’t see, I know that there are bright spots in everything we face. Let’s find them together. 💕
Have you ever heard about this condition? If you live with vision loss, is this something you’ve experience and if so, what are your visual hallucinations of?
If you like learning about rare medical conditions, watch this next: ua-cam.com/video/BjiVKnzwvSg/v-deo.html
I've never heard of this! I'm excited to learn about it!💜
I have never heard of it, but excited to learn!
I never heard of it 💜 so EXCITED are learn about it BBFLS 💕🌟🧚🏻♂️💕🌟✨♥️🌈
Hi Molly! I love your content. I am completely blind and 11 years old. Your videos have inspired me to become a blind UA-cam or and talk about my blindness. I have never had that condition. I was blind at birth.
I have never heard about it before and interested about learning about it.
when Molly’s lips color matches her shirt PERFECTLY, Molly is a Queen
I was just going to post the same. The colors of her eye makeup, lips, and shirt look so good together. Stunning!
She has an impeccable understanding of color. It’s mind blowing.
See, sometimes I just wish I can see.
IKR
She always matches her lips with something like when she had purple hair she had purple lips
Thank you so much for discussing this. I'm a neurology resident doctor, and this is something that we need to be better about normalizing in the medical community--it's scary to come out any tell your doctor "hey, I'm seeing things that aren't there," especially when they are more complicated than simple lines and shapes. I like to explain Charles Bonnet syndrome as being like the eyes' equivalent of phantom limb syndrome--the brain isn't getting input from that sense, so it sort of "makes it up."
Maybe some medical drama on TV will cover this some time?
It happens with hearing as well, as I can attest. :)
My mom is visually impaired (legally blind in left eye, visually impaired in right). When I was in my teens she used to see mess and dirt where there was none ... and tell me to clean up my mess.
She was fully sighted with glasses for over 35 years, then had reduced night vision for about 12, then her retinas tore again. Her brain would fill in the blanks with what "should" be there - especially when she was tired.
Neuro PhD student, the phantom limb syndrome is exactly what my mind immediately went to, along with possible adaptation where the unused neurons would essentially be recruited to other systems but that activity could still be interpreted as sight due to the prexisting connections within the visual system.
Is this the same thing as when you see something out of the corner of your eye and interpret it as something much different and maybe frightening? Like you might see a large man hunched in the corner, but when you look at it, it’s just a a pile of stuff with a coat thrown on top.
Sounds like the "phantom pain" of vision loss.
Or tinnitus... very interesting
Yes that is how my mom’s specialist explained to her.
That’s what I was thinking to😂
The first thing that came to my mind was Phantom Limb Syndrome (but for sight) where you don't feel pain but feel as if the limb is still there.
@@Karinah1414 yeah, or tinnitus for hearing loss. Our bodies are quite strange, especially our neurological system
"A diagnosis is empowering". It really is empowering to have a diagnosis for something. A diagnosis got me all of my necessary medications, my accommodations for schooling, a handicap sticker, and paratransit.
It's also awesome to have an explanation as to why our bodies and minds do certain things.
And a diagnosis that isn't just 'we don't know disease' which is what fibromyalgia is treated like by a lot of people. I can say fybro OR I can say I have many hormone deficiencies and imbalances as well as PCOS.
I graduated from Medical School, and this is the first time I heard of Charles Bonnet Sx. Thanks for raising awareness and for your educational content!
Congratulations to you!
@@harveyabel1354 Thanks! 💜
Tbh there probably many things you haven’t heard of, going to medical school doesn’t teach you everything there is out there. I actually get upset with interns because they think they know everything. There’s plenty of quotes along the lines of you are truly intelligent when you realize you know nothing.
Same! I wish Molly had been a lecturer during my neuro/psych unit...education in compassion and medical fact.
Thank you for your interest and concern.
I too have
Charles Bonnet Syndrome since 2019 due to aneurysm (stroke) behind my retina in my left eye.
I was referred to a
Retina Specialist, after two months I finally had the nerve to tell him of what I see at night after all lights are off in bedroom.
His answer to me was
“ I am not a Psychiatrist” I was bewildered I said to him,
“no I’m not crazy”
I changed doctors, now I have a new doctor who is also a
Retina Specialist after talking to him he told me
You have
“Charles Bonnet Syndrome”
I cried because it had a name.
I still can see but my left eye is blurred, I no longer drive a car because of this.
Please whatever you can do
Help Us-Bring Awareness.
Thank You.
Just wanted to quickly add a note for your editor and say that the little captions, that pop up to add to what you are saying, are pretty hard to read as they are pink on red, and I am completely sighted.
I agree. It’s difficult to read the text on the screen
I was thinking the same thing! It might be hard to distinguish for colourblind people as the contrast is pretty poor.
I agree, same for me!
As someone with vision loss I agree
So glad I'm not alone. I couldn't read them at all and I have pretty good vision.
Oh my gosh! I am visually impaired and I’ve been seeing flashing lights and colours for as long as I can remember. I bought it up in one of my eye appointments when I was 7 years old and they said it’s normal don’t worry about it and another doctor just told me it was my imagination. Thank you soooo much for this video!!! I genuinely thought it was me going mad or something 😅
When she said it mostly effects legally blind people I was kinda afraid that because I'm only VI i wouldn't be counted o.o Nice to know I'm not alone! I've been having distorted images of real things like looking at a person through a funhouse mirror and it's really scary to see
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I can’t imagine going through all this at EIGHT years old when your imagination is already running wild. You were one brave kid!
I can't either, and I had my first surgery when I was 10 months old.
St Jude MAFIA of Cancer Industry - The "Mission" collect the most Money possible before donor know about they will NEVER FIND THE CURE or bye bye Business - The "Hope" to find more ignorant and brains washes donors. They are making 2.4 BILLONS A YEAR IS NOT MORE A "CHARITY" IS A DAMN CORPORATION
Hi, I am a blind psychologist and I did the practical part of my Master’s degree in an organization for blind people. There, I helped to create a little article about CBS.. I think your video is great and super well researched, and I hope this knowledge can reach many people,. That could help the diagnosis process a lot.
Hi AlMari,
How may we find the article you wrote?
Hey, just a note to the editor. The small text is real hard to see with to similar colors. And, with some kinds of color blindness, I could see that the text could be invisible.
Thanks a ton! Someone else mentioned this so I'll definitely pass it on. I'm the only one on my team that reviews my edits so without the comments from the bees I'd have no idea! Very helpful :)
yep, it was almost impossible for me to read. and ... i miss only some colour depth, i'm not colour blind.
Yeah I had to rewind and pause to read. It WAS kinda hard to read.
I have 20:20 vision due to laser eye surgery and I felt like it was really poor contrast and unpleasant to read! I was thinking wow some people probably wouldn't be able to read that at all!
I didn't see it at all so I don't know when it popped up or what it said 😂 (I am blue/green colour blind, so high contrast is suuuuper important to me)
Love that you're talking about this. Hallucinations of any kind are far too often linked with someone being 'crazy', which is problematic for many different reasons. It's actually extremely common and people can deal with different types of hallucinations (visual, auditory, etc) for various reasons - e.g. vision loss.
I’ve started to believe that the problem isn’t having hallucinations, it can become a problem when you’re not able to distinguish between the hallucination and reality. I have olfactory hallucinations (i.e., I smell things that aren’t there) and every doctor I’ve ever talked to about it have just responded, “Huh. That’s weird.”
Molly's a brave person, unlike me.
@@shayelea Do you have any other issues with your sense of smell? Molly has sight loss and sees things; some people with hearing issues hear things (e.g. tinnitus); another comment also compared it to phantom pain after limb loss. I'm wondering if our brains just tend to overcompensate for what's missing.
@@hannahk1306 nope, my sense of smell is otherwise completely normal. In fact, when I’m experiencing phantosmia (the technical term for it) - which is not all the time - if I try to smell something else, the actual scent usually can break through. It’s just the if I’m not trying to smell something specific, every inhale smells a certain way, which I can best describe as sort of like hot dryer sheets (or sometimes onions or cat litter 🙃)
@@shayelea Interesting. I've never heard of this before, aside from people that are recovering from something like a sinus infection and temporarily smell weird things.
I had an evil teacher when I was 7; she threw a kid's desk across the room for being "too messy." My mom was right outside the door volunteering! Why be a teacher if you're gonna act that way?! Thanks for sharing❤️
I had one too, same age as you. She made it known to me that she was not happy about having to follow my IEP, that was made because my doctors found out I was half deaf. She also refused to repeat a question because “You should have been listening” 😑 to put it bluntly she made the year I was diagnosed so much worse.
It’s sounds like tinnitus in people with hearing loss but blind Version! I lost 60% of my hearing five years ago and I now have all kinds of different tones in my ears now.
Tinnitus is something else. I’ve had multiple ear infections and plugged ears from ear wax (narrow ear canals) over the years and the tinnitus ringing is always there in the background. It’s always interesting to me that for the most part the noise is tolerable in most ranges, yet a high frequency noise around the same.... decibels? Is awful. But I get that the tinnitus is more of a nerve frequency to the brain verses actual noise. Fun stuff.
@@Ali.C.91 not necessarily, the reason for tinnitus is basically any type of hearing damage. I’ve had tinnitus my entire life (half deaf) and had a wonderful special Ed teacher who pulled me aside to learn about certain things about my hearing. It’s personally one of the reasons I’ve tried to stop people from making the drastic mistake of having your headphones turned up way to loud, cause even the smallest amount of hearing damage can cause tinnitus.
I have "musical ear syndrome" and have had it for years. I am 60%+ deaf and essentially your brain is recognizing you are deaf and chooses to replace the vacancy with music. I hear music much of the time, especially when I am stressed. So many professionals know nothing about it. Drugs generally don't work. However, anxiety meds reduce the symptoms. I compare it to an "ear worm" or you can't get rid of a song in your head. Due to lack of knowledge, there is a stigma attached to it. Most don't understand. However, at 81, have gotten used to it. Sounds similar to what Molly visually sees as a blind person, except mine is music. My grandmother had the same thing but she blamed it on the neighbors loud music, which worked for her. Lol.
I hear electric guitar music. No particular tune.
@@jeannechapman2696
Loved this! As an optometrist it's great to hear this from a personal perspective and to break the stigma of Charles Bonnets
I thought this was such an interesting video from the perspective of a healthcare professional. It’s not something I’ve ever heard of, but I work in a nursing home
and have had experiences with residents who seem to have something similar going on. Really helps give me perspective on what they may be going through.
Seeing children is common in the elderly with this syndrome. The brain is trying to fill in the gaps in the vision and for some reason the elderly usually see shadows and interpret them as children playing. Also check for infections.
My grandmother had threatening people who'd stare at her. I wonder how many elderly folks in the past were diagnosed with dementia but actually suffered from CBS. :(
Thanks for this. My 86 year old mother struggles with this and it is terrifying for her. Now I can have a better conversation with her about it, where her doctors have not really helped to explain it as well as you have. She gradually has lost her vision over the last decade and now sees lots of "ghosts". Thank you so very much
You and your mom might find the work of Oliver Sacks fascinating.
"Hallucinations" is a 2012 book written by neurologist Oliver Sacks about his and other people's experience with hallucinations. One of the stories is about an older lady with Charles Bonnet Syndrome. That's how I knew the syndrome.
What's it about?
Same here!! I think he also has a ted talk on it
@@bloodybriars9399 Re-read OP's comment :)
@@tabitas.2719 Wait, what? Why?
@@bloodybriars9399 because (s)he's already said what it's on/about. ;)
Hey molly!!!! You should have footless Jo on your series where you interview other disabled creators!!!! I think a lot of us would like to see you to talk and here what you have to say!!!!!!!!
I enjoy her, too!
LOVE her!
Oh my goodness yes, you’ll get on so well! You guys are two of my favourite creators!
I think my grandma had this, she went blind when I was a kid but I remember she sometimes said she was watching colors moving. I have told you about her sometimes even if you don't read my comments bfdbbdd she passed away last year and I wish I could have undertand better what were the aspects of her blindness
this very same happened to my grandma, she didn't told us she was losing sight until she lost it and she said the last couple of years she was just looking at a bright light all the time, your comment moved my hearth
My love to you both. I wish our grandmothers had more cheerful things in common, and never dealt with this.
When I was a kid I used to push in on my eyes and see the wild fireworks and firework patterns of different colors and would do it just to be entertained... it sounds so much like what you describe... so Interesting! Thanks for sharing and always being so open about your experiences!
OMG I know exactly what you mean I did that too!!!
i did that too.
Me too, probably not the best for eye health, lol..
I kinda did this when I was young, except I would rub my eyes until I saw colorful flicking stars.. I don’t recommend doing it now though.
Yeah! I think this is pretty normal though.
I learned about this working with older people with severe vision loss. Fascinates me in a clinical way as well as gaining an understanding and empathy for those with the syndrome.
Very fascinating! And honestly... when you think about it it makes sense that just because the eye doesn't function, doesn't mean that part of the brain that is supposed to process the visual information gets shut down. So it makes sense if that part of the brain "bugs out" a bit trying to get feedback and signals.
Very true, and something that I, as a blind person, explain over and over to many people, and they don’t get it. The brain is truly an amazing task machine. It never leaves any of its parts unused. And there is so much that we still don’t know about it.
Wonderful comment and refreshing to read.
@@khanhhm5762 I once watched a documentary about vision and the brain. They followed a study where a sighted person wore special goggles that blocked all light and vision for several days. They did periodic brain scans to see how, or if, the brain was reacting. It was so interesting! In a fairly short time the area of the brain that normally processed vision began processing touch. I think our brains are so interesting!
@@foreverwander0320 hi:
Thanks for the wonderful comment. Yes, our brains are absolutely fascinating. They do not waste any space, and they start re-wiring if a sense is lost or limited in function. I think it’s really great that you find this stuff interesting too because so many people give very little thought to how the brain is critical to everything that we experience.
Me personally, I am a very visually oriented person, though my physical eyes don’t work. I know, it’s weird for most people to think about, but if one stops and knows anything about how the brain works, this makes a lot of sense. It’s frustrating because my brain craves a lot of visual stimulation, even though I have never had sight since I was born. Which is why visual art is very very resonant with me. I’m easily triggered by words. I see images in my head, and sometimes they don’t makes sense if they aren’t in the proper context.
When the captions finally spell Niamh correctly!!!! Wooo!
The way you describe always seeing strange things in your vision but being able to see past it sounds just like how many people experience tinnitus. For me, I could always hear past the strange sounds I was hearing. It wasn't until it started to affect my hearing that I realized it wasn't "normal".
It’s crazy how common it is but also how under-diagnosed or whatever it is. Like, if it’s so common, why don’t doctors study it more.
I know right!!!!!!!
I used to work in and eye clinic and had one patient with Charles Bonnet syndrome. She mainly had hallucinations of vivid landscapes.
That sounds beautiful. But was it distressing or stimulating for her?
I didn't even know this syndrome existed. Thank you for educating us about this Molly I learn something new from all of your videos and I'm so grateful! Love you Molly.
Thank you for using your platform to raise awareness for underreported syndromes. ✨
I am sighted and molly has more style than I ever will. I look up to her so much. I'm 35 and still look up to her...stay honest everyone
If my geriatrics start seeing things, I start digging to determine what may be the problem. There is always more than what is shown on the surface.
Before my uncle passed away he started having visual hallucinations. They were happy ones so he didn't seem to mind. He was at a restaurant eating dinner with my aunt and he said "do you see that sweet couple over there? They look so in love." She freaked out because there wasn't anyone at a table next to them. He described a couple eating over a candle lit dinner. My aunt continued to freak out and said "there's NO ONE there!" He realized it wasn't real and responded "but wouldn't it be nice if there were?"
Oh I work as a PSW In Ontario and one of my blind residents was seeing hallucinations and was seeing little children in old time clothes running around and at one point the whole room was filled with over 20 children he was extremely descriptive when talking to me about this. Thank you for sharing this information so I can better understand.
This was so cool molly I love seeing the way people live with different life’s. you are my inspiration and I think you are an amazing way to teach people about the blind community
Two things: 1. you always come up with interesting subjects in your videos and explain things in a way that allows us understand blindness more, and 2. you always look very stylish in your every video and I feel like I can learn this from you, too :D
As someone with migraines and auras, I can say that experiencing visual disturbances for the first time is jarring and terrifying. I can't imagine how scary it was for a child since I was in my mid teens when this started happening to me and I was terrified.
Also, pretty sure scishow have a video on Charles Bonnet Syndrome.. if I remember correctly, it's your brain trying to fill in missing information because the visual part of your brain has a lack of stimulation.
Yes, this.
Yes my first migraine happened when I was 13. I was at summer camp and called my mom to get me because I really thought I was losing my sight. It was terrifying.
Same. I had this for the first time at 12, in the middle of school. I thought I was losing my sight or having a stroke or both. Not to mention the horrible headache for 2 days after. I spent most of my teen years just anticipating when the next one would happen since they became a regular thing. Grateful that I grew out of them, they seem to be hereditary since my dad also had them as a teen.
Yes!!! The visual auras can be very terrifying when you don't know what's causing them. I remember my first migraine starting around the age of 3 or 4 and they've just gotten worse over the years. Hell, right now I can feel one coming on and the visual auras are pretty strong. Like, woodgrain patterns flow like water, stuff moves up and down. I also have Alice in Wonderland syndrome where the visuals make things look like they're getting bigger or smaller. If I knew there wouldn't be severe vertigo, nausea, and pain it would be quite pretty.
@@lisaneveitt5203 hey guys, would it be okay if I ask about all of your guys’ experiences?
I get migrain auras where I often can’t see half of an object, like, I won’t be able to see the right side of a clockface or I won’t be able to see the right side of my face. I won’t be able to see the right side in both sides. And it’s so interesting, if not scary, to see how much of my normal visual experience relies on information-less processing, and how that breaks down. Have any of you guys experienced this type of aura where you can’t see one part of your vision? And how you often do not realize that you can’t see something?
I’ve never really had anybody who could understand my experience, so it’s really exciting see these comments.
That would be scary as a full grown woman! You're so strong for going through that at such a young age!
This was really interesting to learn about! When you talked about how it gets worse if you stand up too quickly, I remembered that I (a sighted person) have sometimes already had complete brief vision loss for a few seconds due to my relatively severe orthostatic hypotension where I saw really vivid colorful lights. I specifically remember one time where they looked like pastel stars and one shooting star move in slow motion through my field of vision.
I am wondering whether that is close to what you're experiencing, however, those few seconds already feel so weird that I couldn't imagine what it would be like to live my whole life like this!
I have experienced this on and off throughout my life and I am legally blind. I had no idea that it was considered hallucinations. I just always assumed it was vision loss related and have never said anything to anyone about it.
Thank you for making this video, Molly! Part of my job is to assess sensory and perceptual functioning. CBS is something I ask my patients about, after I've explained how it works and that it is common. People are so relieved to hear that it has a name, that it's a known "thing" and that it is OKAY to talk about it!
I am a sighted person with 20/20 vision and at night, I see those colors and flashing lights too! Only when it’s completely dark and my eyes are closed. This video was so insightful thank you for sharing! I was wondering, since you see green, blue and purple flashes do you consciously remember what those colors and shades look like? Where warm colors would be hard to remember? Thanks for everything you do Molly! ❤️❤️
I used to have them as a child, these multi-coloured dots, that would move across my bed and over me. I found it oddly comforting. I guess it could be a similar cause, the brain creating visual information that isn't there.
Is this not what everyone sees in the dark when they close their eyes?! I thought it was normal
@@JaneteB I don't and never have. I don't think it's normal for those without vision problems.
@@mygirldarby I don’t have vision problems but I thought it’s in the same category like “floaters” are and the black dots when you look at blue, it just looks like when you’re in the dark and relax your eyes to make them “see” the dark you start seeing dots everywhere because your eyes are trying to find the colour in the dark, I might be making all this up but from the few people I’ve asked it’s just that they haven’t tried to stare into darkness and see what’s happening they go to sleep like normal people haha😂
I am a sighted person too and see colored dots or patterna when I close my eyes sometimes. When I was younger I saw thwm more clearly. I did som research and apparently it's normal. They call it closed eye hallucinations.
I clicked so fast! Molly, you are SO inspiring! I'm not blind, but I wear glasses and could lose my vision. You have helped show me that being blind wouldn't limit me! I love watching your videos, keep up the wonderful work that you do!
I love that your sweet mother validated your experiences with teachers. My mother did this for me as well and it is so admirable ❤️ some parents don't support their children in that way
I volunteered in a fourth grade classroom when I was 19. When Molly spoke about having a mean teacher it reminded me of one of the fourth grade teachers ( I did not volunteer in her classroom, thankfully). So many of the children told me how mean she was and were always scared she would yell at them. She wasn’t breaking any rules and I felt very powerless to do anything. She scared me too. It was a sad situation.
Hi Molly! I love your videos so much! I’m so grateful to have found your channel you’ve taught me so much about accessibility and disability. I am a health science student and future medical professional and your perspective has been so impactful in my education and I hope to be an advocate for the disabled community and your perspective has been so influential. I want to help veterans in the area of mental illness and traumatic brain injury. Thanks again for being courageous and sharing your experiences and life!
OMG I didnt know it has a name! I see things that aren't actually there and my doctor said it was normal for patients with RP. I have RP but still have some vision left but I do see 24/7 these flashing lights. They're like circles, like water rings. I don't know how to describe them. Thanks Molly for teaching me something new today 😊
I love letting us know what you go through as a blind woman. Thank you so much Molly 💜💜
Oh man this really brought me back to elementary school when I was trying to tell people about my static vision. I couldn't describe it well and no one believed me for the longest time. Eventually I just stopped talking about it.
Visual snow. It's more common than people think but it's something usually discovered by accident. I have that too.
I'm loosing my vision very slowly and trying to explain how I see things differently from a fully sighted person is very hard! I've had way too many people think I'm faking bc I'm only just starting to lose my vision.
as a fully sighted person i really love the work you do molly! i feel so lucky to have found your channel because i get to learn so much. i also live with a disability that isn’t fully understood by the medical world so it really makes my heart happy that you make these types of videos because i know that so many people will be positively impacted by you making information so accessible and also so many people will realize they aren’t alone in their experiences.
Hey Molly *smile emoji* I literally set up an alarm 2min before you drop so I can be here ASAP, love your content.
That's true dedication and youtuber support! Sending love and good vibes all around
Thanks for educating! Never heard of this condition before so this was all very interesting to learn
fascinating that people seeing realistic images are seeing historical images... not modern day things
Thank you for the education! As a nurse I have not heard of this syndrome and it was great to learn about it from a person's perspective who actually experiences it.
I had no idea this was a thing! Thank you for sharing this, Molly ❤️
This is one of the best videos I’ve seen of yours Molly. Well done.
Thank you for this story. I enjoy hearing what you /have gone through.
So glad I found your channel. My mom just lost most of her vision and is experiencing Charles Bonnet Syndrome. You’re right, it really helped when we found that it is a syndrome. Can’t wait to show your channel to her. You are very inspiring. Thank you.
I’m 22 with RP I’ve had this my whole life and had no idea it had a name! Very similar I see flashing lights and shapes 24/7 My older brother also has RP so I’ve always thought that this was someone that came with my RP, and that everyone else did to.
Listening to you talk about your struggles with a teacher and the teacher blatantly accusing you of faking brings back so many memories for me. My vision deteriorated drastically when I was 9 years old and my fourth grade teacher put up such a fuss, accusing me of faking it.
All my parents were asking was that I be allowed to sit at the front of the classroom so I could read the board and that they could copy down the questions on my homework (because we had to copy questions out of a book and then write the answers). The teacher accused me of cheating, lying, and being a trouble maker.
My parents had to bring in all sorts of documentation to the principal from the specialists I was seeing to prove that I wasn't faking it. They ultimately transferred me to a different school and I never had another problem like that. I'm lucky, I still have my vision, bad as it may be. But that school year was extremely traumatizing. I'm so sorry you went through that
i have that, but no loss of color, really bad now that i've had multiple strokes. mostly wandering spots and geometric shapes. also see buildings where they don't exist, and sunlight coming through windows even at night.
awe when you said "to just tell her to sit back and enjoy the show" that was kinda cute because its kinda like your own private circus and that it was being help just for you!I know it wasn't that "happy" but atleast that is a better way of looking at it!
Welp I guess I need to take a trip to the eye doctor. When I close my eyes at night i will see bright lights in my pitch black room while my eyes are closed. I see squiggles often and line flashes during the day. 💀 it has gotten worse lately.
You should also mention it to your family Dr as it can be a byproduct of high blood pressure as well.
Definitely get your eyes checked! But I also see this sometimes.. not often, but once in a while. I have really really high myopia but as far as I know, my vision is stable. I went to the eye doctor last month and it's been healthy! So hopefully, its not as bad as Molly mentioned.
It's normal to see things in pitch black. It's your brain trying to compensate for lack of being able to see
I've had the same thing happen to me for years too! I go to the eye doctor yearly, and supposedly my retinas are healthy. I've had problems with my optic nerve in the past but it seems to have healed somehow... I also get very green/blue bright lights in my peripheral vision sometimes when I'm reading, and the lighting of the room doesn't seem to have much of an effect. This also happens to me at night. Weirdly I don't have any significant vision loss - just myopia/astigmatism. I kind of assumed it was normal, but I think I might ask about this at my next eye appointment too.
I think this happens to most people/everyone
Molly, I think you’re awesome. You’re so smart, funny, talented, informative, and such a great advocate for the blind community.
I wonder why all the realistic visions are of olden time things
This is completely dependent on the individual that is experiencing it. I have my most vivid hallucinations as landscapes or people that I know in love
Because ghosts only appear to blind people obviously.
I found that aspect super interesting too- perhaps it's how we process pictures, and that olden pictures are so ubiquitous that the brain thinks 'we need pictures, these are pictures right?'
@@BlackHayateTheThird Actually The human brain has large areas dedicated to visual processing. Those areas don't just stop working when you can't see. Dreams for example are the brains visual processing occurring in low power mode when the brain is not busy maintaining cognition and can devote more resources to visual processing. It seems obvious that blind people have unused mental bandwidth that the brain will allocate to other tasks rather than let it just sit unused, thus resulting in unpredictable hallucinations and possibly re-allocation of stored visual data.
@@rmora1 Yes- I watched the video. But the comment is specifically about the realistic olden-days imagery blind people see with these hallucinations. It's incredibly specific that it's so common, and it likely relates to our relationship with imagery when people do see.
Thank you for making this video Molly. I appreciate learning more about vision impairments and learning more of what people experience. I’m sure you’ve made many people feel less alone by talking about this syndrome
thank you for sharing this! i’ve never heard of this
Thanks for sharing! And thanks Niamh for chiming in!
I have about 1% of vision remaining and this explains so much for me. It has become the normal for me too now but I always thought I was going crazy.
Im so glad you are talking about this! I was in a car accident and had an eye injury and have experienced this to different degrees on and off since then. It's so hard for people to understand that I'm not blind but don't do things like drive because I randomly hallucinate. They also don't seem to understand it's a visual thing only and that I'm mentally lucid. They always just say "oh you mean you are schizophrenic". I'm quite sure this condition is much more common than is recognized
Hello, I am realizing from this video I have the exact same condition. I have retinopathy of prematurity, meaning I was born three months premature and my retinas are detached due to being born early. My condition gets worse if I am tired that’s when it kicks in the most. Nice to know that it actually has a name.
You’re the best Molly, I’m sure this is going to help so many people
Omg thats crazy iv been noticing this since 6th grade when my retinas started detaching. I thought it was just me... Iv never told anyone. Holy shit!!!
i'm not blind, and do not know anyone who is blind or have charles bonnet syndrome. but i do apprechiate you bringing this up so much. i had no idea that it existed. thank you for spreading awareness where it's really needed.
Hi Molly! So I am not blind. But I’ve had a brain injury for two years, and notice I get vision flashes, when I close my eyes and even sometimes when they’re open when I’m really overstimulated. Could be very different! But thanks for educating me :)
It's scary how quickly it comes on fellow brain injury person here.
I'm so sprry to hear this. Thanks as usual for educating all of this. Molly, I am helping my company create websites that are ADA compliant for use with a screen reader. I thought of you and I was so glad that I watched your channel. You opened my eyes to better understanding visual impairments. I have ADHD and a lot of things are harder for me because of it. I admire your intelligence and your flexibility to learn and teach.
Molly I love you you’re so strong and amazing!!!❤️❤️❤️
The closest I can imagine those hallucinations to be is the 'auras' I get when my migraines start. They look like when on TV they try to block someone's face, little blurred blocks that then make up more and more of your vision. This is my warning signal that the headache is coming, take my meds and get to bed. I can't imagine these visions to stay all day every day. Thank you for sharing this, I have only just stumbled on to your channel an hour ago and am watching some of the older videos to catch up. Your audiobook is already in my Audible library. Thanks again!
Molly, I think your statement about the difference between this condition and other mental conditions needs further clarification. My dad suffers from schizophrenia and he, because of years of knowing his condition and medication, is able to tell his hallucinations aren't real. I think a better explanation might be that this condition only presents itself with visual hallucinations, while other mental illnesses also present themselves with all forms of hallucinations, paranoia, depression, etc.
My grandmother has CBS, she developed it after having a stroke and losing her vision in one eye. Then had injections for her psoriasis down the road that one of the side effects were potential lose of vision. She has about half her vision left in one eye. Her hallucinations start when her blood pressure rises. Thankfully she is doing good at trying not to stress, and the family is constantly visiting her. We have all tried making it easy for her with sensory gadgets and tools to help her cope. She's just turned 96 and still lives alone, I am beyond proud of her. She's my bestfriend, my mom (she raised me since I was 3 days old), and overall the best part of our family and the strongest person I know! I'm happy that I can share this video to her the next time I see her to let her know she isnt alone, young and old. Thank you Molly💜
Hey Molly! This year I have started dealing with Charles Bonnet Syndrome. I have retinopathy of Prematurity and a damaged cornea in my left eye which has some residual vision. For me the Hallucinations usually take place in the evening. I will look at the window and it will look as bright as day, or I will walk in to a room and it will look like the light is on. My hallucinations usually last from 30 seconds to a couple minutes. I can usually make them stop by blinking.
It’s so interesting to learn about this condition. Us sighted people are so ignorant about your daily struggles and you help us to understand. Thank you Molly and lots of love xx
I also wanted to add I found the text box slightly hard to read in the corner
Thank you so much for talking about this. At the age of 45, I lost all but a small portion of my vision in my right eye due to a central retinal artery occlusion ("CRAO"). That first night in the hospital, hooked up to IVs of blood thinners, I saw a dark silhouette of a man in my hospital room. I was absolutely terrified. The terror came because in some moments I thought it was a real person and it felt menacing & a danger to me but in other moments, I thought I was losing my mind. Either way, I was too afraid to call a nurse for help and it was one of the longest nights of my life.
In the morning, my eye doctor was so wonderful in explaining to me about Charles Bonnet Syndrome and how normal it was for me to experience the hallucinations. Talk about relieved. I only wished I had been told that this was a possibility before I was left alone in the dark hospital room. My doctor told me that she sees it a lot in her patients who have had a CRAO and also in patients with macular degeneration. So note to neurologists and eye doctors who have seniors as patients (and the "zebra" patients like me.) You need to tell your patients about Charles Bonnet Syndrome at the first sign of vision loss. My visions got smaller as I got more used to being blind in one eye but I still have to ask my adult kids once in a while if "that spider crawling up the wall" is real. Vast improvement from all the crabs that used to hang out in the living room. LOL
I’m still getting used to the intro so forgive me and you seem to be always gracing me with your presence and I love your channel and whatever you have going on today with your hair or clothing or whatever you look great
I love the intro. It's adorable! Also, thanks for describing things, it really helps. Keep it up, Molly!
Where are the links to the articles? I was really looking forward to reading those. I read about visual hallucinations in one of Dr Oliver Saks' fantastic books. He was a brilliant neurologist.
I’ve never seen your video before, but this is amazing. Talking about a topic that it’s not popular and can help other is great great work. I will start following you.
How mama bee says school... love it
“Skeul”
That must be so hard to see that all the time. I used to have hallucinations and think I was seeing ghosts when I was younger. I’m getting like 10-16 hours of mental health testing to see what I can be diagnosed with on top of depression and anxiety.
This is way off topic but I have gastroparesis or stomach paralysis. Having one of your organs not working is so hard and I’m so proud of you for living your life how you do. It can be hard sometimes but we have to stick together. I’ve watched your channel a few years now and can’t imagine what it would be like to lose sight but life just happens and you can’t control it. I love you Molly. Thank you for showing sighted people your story so we have more compassion towards people in your shoes. I want to talk more on my chronic illness on my tiktok but like I always get these comments that try helping me but they don’t understand nothing will help. My illness can be “treated” (not very well) but never cured. I’d love to educate people on at least my version of my illness. It’s different for everyone is something I’ve noticed about mine but yeah.
Not sure where I’m even going with this but I appreciate you and what you do. I also have type 2 diabetes and have noticed my eyesight will change based on my blood sugar and some days I’ll get tiny black specs sometimes and think I’m losing my vision and it scares me but it’s comforting to watch how you’ve handled your vision loss.
those text boxes are impossible to read with that colour contrast
As a mental health counselor, thank you for sharing this information!
Best way to enjoy a Tuesday! What advice would you give someone who is going to their optomologist and is nervous ?
I love hearing more and learning more. I've always loved your videos and been interested in your life story.
I was born with Retinopathy of Prematurity. My retinas were frozen with liquid nitrogen. I still see floaters (squiggles and dots) almost constantly.
Woah! If I may ask (no pressure to answer :) ) were they frozen when you were born or do you mean there was an accident?
@@amyj4106 i was born at 25 weeks and weighted 1 lb 13 oz. I was on oxygen and was very sick. It caused abnormal blood vessels to grow and spread throughout the retina. These abnormal blood vessels are fragile and can leak, scarring the retina and pulling it out of position. This causes a retinal detachment. My retinas were detaching which will cause complete blindness, so to retain some of my vision the doctors used liquid nitrogen to freeze my retinas and stop the from detatching.
@@Dreadsneko Wow that's fascinating, thank you for answering :)
Molly, thank you very much for speaking about Charles Bonnet Syndrome. This video needs to be broadcasted all over the world.
Molly can we have a relationship update since the move and being long distance again???
It will be 1 year on Monday!
Thank you so much for including closed captions! We love to see it. I love your videos 🖤
The best bees are the early bees 🤩🐝🥰
Killer Bee Club! 🐝💛⭐️🌻🌼
I love hearing more about your conditions! I know you used to be afraid to share about anything that isn't RP, but we are definitely interested. Learning more about you, and people we might meet in real life who tells us about their diagnosis, is always a pleasure.
I had no idea that my daily constant fireworks show was part of the Charles Bonnet Syndrome classification. I had always heard it described as hallucinations and thought that meant more realistic things. I have dealt with this through out my vision loss journey. I had no idea that I was experiencing Charles Bonnet Syndrome this whole time. Thank you! I have a bunch of yellow dits that vary and flash constantly. They also get worse the more tired or stressed I am, and when I get up too fast. I think that may be blood pressure related? Just a guess. My retina has detached twice, and I’ve had a bunch of cornea transplants, along with a bunch of other things. All stemming from Retinablastoma when I was 3.
Loooving this new branding colour scheme 😌🙌🏻