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Tizer
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13/05/2008
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10:39
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I'm writing this in the hope that it might help someone out there, now or in the future, who experiences hallucinations and begins to fear the worst - "I must be going mad, losing my mind, suffering dementia" etc. The answer is don't panic - in reality, if you experience hallucinations there is a strong likelihood that they are related to eyesight problems and nothing to do with "losing your mind".
I was prompted to write when I read today that the prevalence of visual hallucinations in "patients with visual impairment" varies from 10% to 15%. Even if we allow that these hallucinations usually occur only in people with serious eye problems, just think how many people could be affected (such hallucinations are very common in macular degeneration). Also, doctors are not as familiar with this as we might expect, especially considering how many people must suffer the problem.
A paper published in the British Medical Journal in 2004 says: "Doctors are unfamiliar with the syndrome as a possible diagnosis. "Near misses" have been reported, in which patients were almost confined to mental health institutions. Given the prevalence of partial visual impairment, the number of people in the community, especially elderly people, who do not report the symptoms for fear of being labelled as mentally unwell or demented must be substantial. Clinicians must therefore be aware and ask elderly people with visual impairment whether they have hallucinations. Firm reassurance that the syndrome is not related to mental illness is in itself a major relief to an elderly person burdened already with failing vision, social isolation, and other medical problems."
Anyone who does suffer this form of hallucination will be pleased to know that they often disappear after 12 to 18 months. If not, then medication is available.
For those who want to know more about this problem, known as "Charles Bonnet syndrome", here is some more detailed information taken from the RNIB's web page on this topic. You can find further interesting information on the page.
Charles Bonnet syndrome (CBS) is a term used to describe the situation when people with sight problems start to see things that they know aren't real. Sometimes called "visual hallucinations", the things people see can take all kinds of forms, from simple patterns of straight lines to detailed pictures of people or buildings. A Swiss philosopher named Charles Bonnet first described this condition in 1760 when he noticed that his grandfather, who was almost blind, saw patterns, figures, birds and buildings that were not there. Although the condition was described almost 250 years ago, it is still largely unknown by ordinary doctors and nurses. This is partly because of a lack of knowledge about the syndrome and partly because people experiencing it don't talk about their problems from fear of being thought of as mentally ill.
Charles Bonnet syndrome affects people with serious sight loss, and usually only people who have lost their sight later in life, but can affect people of any age, often appearing after a period of worsening
At the moment little is known about how the brain stores the information it gets from the eyes and how we use this information to help us create the pictures we see. There is some research that shows that when we see, the information from the eyes actually stops the brain from creating its own pictures. When people lose their sight, their brains are not receiving as many pictures as they used to, and sometimes new fantasy pictures or old pictures stored in our brains are released and experienced as though they were seen. These experiences seem to happen when there is not much going on, for example, when people are sitting alone somewhere quiet that is familiar to them or when they are in lying in bed at night.
For most people, just knowing that it is poor vision and not mental illness that causes these problems is the best treatment, helping to understand and come to terms with them. Generally, these experiences will disappear after about a year or 18 months but, of course, this will not happen for everyone with this problem. For those with serious disturbing hallucinations, a number of medications are available. Unfortunately, none are effective for everyone.
One way of dealing with visions, when they occur, is to try to change things to see if this will help them disappear. For example, if they happen in the dark, then try switching a light on or if they happen in the light, try switching the light off. If they happen when you are sitting down, try standing up. Some people find that moving their eyes helps (for example, from left to right or up and down)
Sometimes talking over feelings with a counsellor, psychologist or psychiatrist can help provide people with ways of coping with the visions. If you are having problems with yours, talking to your GP may be a good way to find some help. Although CBS is not connected to mental health problems, the professionals in this field are the experts at helping people deal with hallucinations. If you are very distressed by your hallucinations, then your GP may want to refer you to the local mental health team.
The BMJ paper referred to above gives further information. The condition is named after the Swiss naturalist and philosopher Charles Bonnet. He reported the hallucinations of Charles Lullin, his 89 year old otherwise healthy and cognitively sound grandfather, who was blind owing to cataract and yet vividly saw men, women, birds, and buildings.
A recent case report of a man with macular degeneration noted in the BMJ paper gives some idea of the hallucinations. Neighbours brought an 87 year old white widower-who lived alone in a flat-to the medical assessment unit of a district general hospital. They were concerned that he was becoming demented. Apparently he had reported seeing people and animals in his house-including bears and Highland cattle. He verified these statements and said he had been seeing them for the previous six weeks. He had also often seen swarms of flies and blue fish darting across the room. He knew that these visions were not real and they didn't bother him much, but he thought he might be losing his mind. The visions lasted for minutes to hours, and the cattle used to stare at him while quietly munching away at the grass. The visions tended to occur more in the evenings before he switched on the lights.
It's also worth noting that a similar syndrome is found with patients suffering acquired deafness, resulting in musical auditory hallucinations.
Click for RNIB web page.
Click for BMJ paper.
Edited by - Tizer on 13/05/2008 10:41:15
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wendyf
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Posted - 13/05/2008 : 13:39
That's very interesting Tizer. My mother, who has just about lost the sight in one eye due to macular degeneration, has been quite disturbed by seeing a coloured square pattern like a chessboard. I went with her to see both an optician and an eye specialist about it, but neither of them came up with CBS as a possible explanation. My mum was left feeling at best slightly silly, and more worrying, thinking she may have a brain tumour. She will be very relieved to hear that it happens to other people! Thankyou
Wendy
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Stanley
Local Historian & Old Fart
36804 Posts
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Posted - 13/05/2008 : 17:29
Never heard of it Tizer. Posting this is a service...... (Never had the syndrome either.)
Stanley Challenger Graham
Barlick View
stanley at barnoldswick.freeserve.co.uk |
Sue
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Posted - 13/05/2008 : 18:29
I was hallucinating badly with some of the early morphine based painkillers I was on. I remember shutting each eye in turn to see if it was my eye , or my brain or reality. I opted for reality, VERY frightening indeed. I had spinning flashing lights coming across the room towards me. It happened 3 nights in a row. Bob switched on the light, amd I said if he could see one of them, it was spinning in the space just between us.
He said he couldn't which frightened me even more as it was still there. Then suddenly they disappeared. I know I was wide awake as I remember sitting up in bed and watching the light. HORRIBLE. Its not the same as above
However just before my Mum died she was suffering with dementia and needed cataract treatment. I was convinced that the eyesight was cauing a lot of her problems. as she would describe things that were there. What she described was not there, but something was. I am sure the poor eyesight contributed to the dementia. Poor Mum never did have her cataracts done. She died of lymphoma whilst she was on the waiting list!!
Sue
Edited by - Sue on 14/05/2008 09:45:17 AM
If you keep searching you'll find it |
Tizer
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Posted - 13/05/2008 : 20:28
I'm pleased it might help some people to know that the hallucinations can have such a simple cause and be so rational. I only found out about this because my father-in-law (80) has to go to the hospital tomorrow to have the fluid drained from the lens of his eye and replaced with something clear so he can see properly. He sent me an email with a link to a web site that explained it all. On that site I saw a note about the hallucinations and that led me further to the other web sites. I was shocked to read that doctors knew so little about it and that so many people could be affected. It worries me to think that people might be wrongly told they have dementia or other brain type problems when it's really something much less serious. The poor GPs are overloaded and can't be expected to keep up with all these different causes for problems.
If you are interested in eye problems in general, have a look at this web site - it has simple explanations and great graphics (even if some of the text is a bit garbled!).
http://www.goodhope.org.uk/departments/eyedept/index.htm
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Stanley
Local Historian & Old Fart
36804 Posts
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Posted - 14/05/2008 : 06:50
I've pointed Margaret to this topic.
Stanley Challenger Graham
Barlick View
stanley at barnoldswick.freeserve.co.uk |
Tizer
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Posted - 14/05/2008 : 10:56
Wendy, I guess it's possible your mother is seeing a visual hallucination of the type described above. Another possibility is that the chessboard pattern is similar to what the opthalmologists call "zigzag" or "fortification structures". This latter name is because the person sees something similar to looking down on the plan of a fort or castle -zigzag lines going round in a circle or polygon.
Again, I only learned about this yesterday but now know that I get zigzag sometimes. Apparently it is nothing to worry about and is linked to migraine. I don't get migraine headaches but this is not unusual either. Migraines and the zigzag are said to be due to spasms in small arteries in the brain.
A case of zigzag is described here:
http://www.medhelp.org/forums/eyecare/archive/107.html
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wendyf
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Posted - 14/05/2008 : 12:42
I know what you mean Tizer, I used to get the zig zag effect without the migraine. It would start as a small speck in the centre of my vision then seem to grow outwards until it disappeared. I came to link the "attacks" to seeing a sudden flash of bright light, and found that sitting in a darkened room for 15 minutes or so would get rid of the effect,and the nausea it produced, quite quickly.
Mum's chessboard seems, from how she describes it ,to be a bit more static and appears when she is looking at the TV or a page of a book.
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Sue
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Posted - 14/05/2008 : 13:33
I get zig zag with migraine. Once I lost half a class of students in my visual field due to zig zag. At first I was perturbed but now I know what it is it doesn't bother me.
Sue
If you keep searching you'll find it |
belle
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Posted - 14/05/2008 : 13:36
On a much smaller scale, I have corneal disfigurement, so when I look at straight lines, especially white ones, they tend to bobble at the edges like looking through a heat haze.
Life is what you make it |
Tizer
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Posted - 14/05/2008 : 20:31
I forgot to say, Wendy, that it's a curious coincidence that your Mum gets a chessboard effect. When I googled for chessboard and macular I got lots of results. Apparently the experts use something with a chessboard pattern on it to assess macular degeneration! (Some name like Amsli is used for the pattern.)
I wonder if your Mum was tested with the pattern and now it pops up in her brain whenever she thinks about her eye problems? Yeah, I know, sounds a bit far-fetched doesn't it?
Talking about misdiagnosis (as I was above in connection with hallucination), I suddenly remembered this other example. I posted it in February in the thread on SSSI drugs.
"A programme on the radio on Tuesday night explained about people who suffer from unexplained fainting. The usual cause is simply concerned with increased dilation of blood vessels in the muscles - too much blood going into the muscles and not enough to the brain. But an interesting fact was that many people who go to the doctor with this fainting problem get diagnosed as epileptic and spend the rest of their days on drugs for epilepsy. And it's a vicious spiral - once you are told you are epileptic and given the drug you don't get the treatment for fainting. that would cure you. Also you get banned from driving and from many jobs (employers don't want staff who might have a fit). Apparently there are tens of thousands of people in Britain who are probably wrongly diagnosed as epileptic. Fortunately there is now a team of doctors who are working to prevent this mis-diagnosis."
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Callunna
Revolving Grey Blob
3044 Posts
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Posted - 14/05/2008 : 21:00
"I'm writing this in the hope that it might help someone out there, now or in the future, who experiences hallucinations and begins to fear the worst - "I must be going mad, losing my mind, suffering dementia" etc. The answer is don't panic - in reality, if you experience hallucinations there is a strong likelihood that they are related to eyesight problems and nothing to do with "losing your mind".
Tizzy, this is such a relief.
For several years now I've been seeing a small, plump, sagging woman shuffling about in my bedroom. It always happens as I'm passing the mirror, by a strange coincidence.
I thought it must be a hallucination because as you all know I'm tall, slender and lithe.
I shall go to my optician and demand medication. |
wendyf
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Posted - 15/05/2008 : 08:58
Tizer that isn't such a far fetched an idea. In fact Mum has a similar test (black lines in a criss cross pattern with a dot in the central square) that she regularly studies to test her good eye! However she assures me that the squares she "sees" are blue, and even looking at blue items can trigger it.
Cally I have that syndrome too, if you raise the mirrors higher you can avoid seeing the small, plump people.
Wendy
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belle
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Posted - 15/05/2008 : 09:29
I keep seeing my mother....mirror mirror on the wall I am my mother after all!
Life is what you make it |
Tizer
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Posted - 15/05/2008 : 10:56
Had you not heard? The government launched an initiative to make sure all mirrors, by default, showed small, plump people. The objective is to (a) reinforce its obesity claims and (b) to drive consumers back to the shops for diet remedies and new clothes, thus keeping the economy on a high.
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Having hallucinations? Don't panic!
