I have bilateral homonymous hemianopia, due to a stroke at 47, as the NHS essentially abandoned me as soon as they could shoo me out of the hospital, no-one has ever mentioned Charles Bonnet to me, I'm ok with my hallucinations of cats and dogs these days, having a hallucination of my own cat can be slightly worrying, but not distressing. Unfortunately the GPs here in Bradford are worthless, and just ignore me when I mention that I've been hallucinating. Still trying to see a neurologist 7 years on, hopefully they'll at least take an interest.
thanx for the video man. i was diagnosed with stargards when i was 9 years old and i had my first experions when i was @t i have so much to tell you i now alusenate al the time it never go away not evn when i close my eyes only found out that im not alone a vew days ago im 29 so for almost 20years i had scary funny and just playn weerd times it gose way deeper then alot of ppl @t self also freekt out ass a kid .thank you for teling ppl about this i have been looking for awnsers for a long time and now i can tell ppl aswel im not crazy aferal lol
My mom was diagnosed 2 weeks ago, since then my dads health has gone downhill and he only has a few days left probably, I think the stress of him making this transition has made her visions worse, this morning I get to the house and all the doors are blocked by furniture in the inside, she had not told me her visions had gotten that bad that quick, last I heard she was at the most seeing crows in the room. Last night there were ‘people’ in her house.
The GP''s don't want any part in evaluating this syndrome or exploring other causes. Specialists are the current go to people and it is exhausting having to wait weeks or months to get in to see them while a loved one is equally exhausted dealing with this syndrome. Add insurance red tape on top of that and the vicious circle of trying to seek help continues.
My Mom was diagnosed two days ago, it is coming with heavy psychosis and tremors from the meds, she cannot even get to the bathroom without falling. We have been to the ER three times now looking for help and haven't even seen a DR..just NP's and PA's, not even a social work consult, haven't even offered a walker or a cane, it is shameful, watching her suffer has been heartbreaking.
With my mother in law we have identified with two unrelated hospital stay found when she had oxygen and IV fluids her visions stopped. Once she was off of them, everything slowly (day or so) came back. Trying to get them to prescribe this (oxygen/fluid) for her but it's a struggle. Seriously she's going to lose her mind shortly if we don't find something to reduce the visions. Frankly she's been dealing with this for over 10 years with visions never stopping. Constant. Seriously? should tell them to ignore? She sees snakes and people. She has absolutely no dimentia. She has a brilliant mind...these things just are "added" to her world. We tell her to touch the things she is seeing to get herself straight again. But how do you deal with constant visions?? She can control it less and less every day.
I'm so sorry she's going through that. my mom was very fortunate in that her blindness was cured with surgery, and her symptoms went away just a few hours after her vision was restored. It's so hard when people think that these sufferers have dementia, and don't take the symptoms seriously.
Have you any advice on how to help your Mom get through an episode? My Mom's CBS seems to be getting worse. I don't know how to help her.....it's heartbreaking.
I have Retinitis Pigmentosa and have recently been experiencing a new visual phenomena unlike any I’ve encountered before. I sometimes see white balls of light dancing at the edge of my vision. These balls of light are not like the usual visual fuzz/lights I’ve experienced throughout my life. They look like they are actually real objects whereas the usual lights and fuzz feel like they are just occurring inside my eye. Like the usual visual floaters many people experience. Could these new lights be a result of this syndrome? I am well aware that they aren’t real and am not bothered or disturbed by them. The first time I saw one it spooked me a little since it seemed to be dancing to try and get my attention. Then when I tried to look at it it vanished.
Thank you for the presentation. Very informative.
I have bilateral homonymous hemianopia, due to a stroke at 47, as the NHS essentially abandoned me as soon as they could shoo me out of the hospital, no-one has ever mentioned Charles Bonnet to me, I'm ok with my hallucinations of cats and dogs these days, having a hallucination of my own cat can be slightly worrying, but not distressing. Unfortunately the GPs here in Bradford are worthless, and just ignore me when I mention that I've been hallucinating. Still trying to see a neurologist 7 years on, hopefully they'll at least take an interest.
thanx for the video man. i was diagnosed with stargards when i was 9 years old and i had my first experions when i was @t i have so much to tell you i now alusenate al the time it never go away not evn when i close my eyes only found out that im not alone a vew days ago im 29 so for almost 20years i had scary funny and just playn weerd times it gose way deeper then alot of ppl @t self also freekt out ass a kid .thank you for teling ppl about this i have been looking for awnsers for a long time and now i can tell ppl aswel im not crazy aferal lol
My mom was diagnosed 2 weeks ago, since then my dads health has gone downhill and he only has a few days left probably, I think the stress of him making this transition has made her visions worse, this morning I get to the house and all the doors are blocked by furniture in the inside, she had not told me her visions had gotten that bad that quick, last I heard she was at the most seeing crows in the room. Last night there were ‘people’ in her house.
The GP''s don't want any part in evaluating this syndrome or exploring other causes. Specialists are the current go to people and it is exhausting having to wait weeks or months to get in to see them while a loved one is equally exhausted dealing with this syndrome. Add insurance red tape on top of that and the vicious circle of trying to seek help continues.
My Mom was diagnosed two days ago, it is coming with heavy psychosis and tremors from the meds, she cannot even get to the bathroom without falling. We have been to the ER three times now looking for help and haven't even seen a DR..just NP's and PA's, not even a social work consult, haven't even offered a walker or a cane, it is shameful, watching her suffer has been heartbreaking.
I was young 14 year's old to experience this type of symptoms I just go outside and look up to the star to calm my mind
Is just my sightseeing becoming wider and zooming in millisecond switch it again and again I'm not seeing gost or anything type rainbow
Also my hearing became a loader
i can now kind of controle it.what i think of i can see but it keeps changing
With my mother in law we have identified with two unrelated hospital stay found when she had oxygen and IV fluids her visions stopped. Once she was off of them, everything slowly (day or so) came back. Trying to get them to prescribe this (oxygen/fluid) for her but it's a struggle. Seriously she's going to lose her mind shortly if we don't find something to reduce the visions. Frankly she's been dealing with this for over 10 years with visions never stopping. Constant. Seriously? should tell them to ignore? She sees snakes and people. She has absolutely no dimentia. She has a brilliant mind...these things just are "added" to her world. We tell her to touch the things she is seeing to get herself straight again. But how do you deal with constant visions?? She can control it less and less every day.
I'm so sorry she's going through that. my mom was very fortunate in that her blindness was cured with surgery, and her symptoms went away just a few hours after her vision was restored. It's so hard when people think that these sufferers have dementia, and don't take the symptoms seriously.
Have you any advice on how to help your Mom get through an episode? My Mom's CBS seems to be getting worse. I don't know how to help her.....it's heartbreaking.
Frighting... absolutely scared
No patterns or shapes but others absolutely. Nailed this thank you very verymuch .
I have Retinitis Pigmentosa and have recently been experiencing a new visual phenomena unlike any I’ve encountered before.
I sometimes see white balls of light dancing at the edge of my vision. These balls of light are not like the usual visual fuzz/lights I’ve experienced throughout my life. They look like they are actually real objects whereas the usual lights and fuzz feel like they are just occurring inside my eye. Like the usual visual floaters many people experience.
Could these new lights be a result of this syndrome? I am well aware that they aren’t real and am not bothered or disturbed by them. The first time I saw one it spooked me a little since it seemed to be dancing to try and get my attention. Then when I tried to look at it it vanished.
Free LSD never bothered me 🙂
Woke Ghost dimension ?