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Charles Bonnet Syndrome

After 22 years as an RN, I now write about medical issues and new medical advances. Diet, exercise, treatment, and lifestyle are important.

Vision loss

Vision loss

Overview

Charles Bonnet syndrome (CBS) is a condition that causes hallucinations due to vision. Most people are not aware of this condition, despite one in every two people with vision loss experience hallucinations. The hallucinations are not due to any type of dementia, and the other senses are not involved. This is most common among the elderly as they are more likely to experience eye conditions that affect sight, such as age-related macular degeneration. Approximately one-half of the people with macular degeneration are affected with CBS.

Statistically some samples say it accounts for 1% up to 10%, and it is thought that 10,000 people in the U.K. are affected with CBS. It is more common when the vision in both eyes is affected. Another study found an older-aged, low-vision population with CBS at 17.5%.

History of Charles Bonnet Syndrome

In 1760, Charles Bonnet first described CBS when his vision deteriorated and he realized he was seeing things that are not real (hallucinations). People with CBS typically realize the hallucinations are not real, even when they are vivid.

charles-bonnet-syndrome

Visual Hallucinations

The visual hallucinations caused by CBS are complex in people that are psychologically normal. When a person cannot see like they once did there is less information sent to the brain. The possible cause of CBS is the way the brain reacts to the loss of information, although it is not clear why the vision loss leads to hallucinations. Researchers think the brain may be filling in the gaps with fantasy patterns or possibly images that are stored in the brain. Stored images may be experienced as hallucinations.

CBS is diagnosed using your medical history, a physical and eye examination and some medical tests to rule out other causes of visual hallucinations.

Charles Bonnet Syndrome - Living With Macular Disease

Types of Hallucinations

These hallucinations usually occur when the patient is alone and in a quiet, familiar environment. There are two types of visual hallucinations, which include:

  1. Simple hallucinations, such as lines or patterns like a mosaic
  2. Complicated hallucinations, such as landscapes, buildings or places

More severe the vision loss causes more complicated hallucinations. The hallucinations can change from one episode to the next. Images can be:

  • In color or black and white
  • Static (like a photo) or moving (a real life event)
  • Fantastic (lie a mythological creature) or realistic (a common animal)
  • Brief (minutes) or lengthy (several hours)
  • Enjoyable or frightening
  • Meaningless and random or familiar people or places
  • Different each time or it it may be the same items in each hallucination

Complex hallucinations can be very unsettling even when the visions are not frightening, but seeing a stranger in your home or yard is very disturbing.

Visual hallucinations are a normal response the brain has to the loss of vision, but as Charles Bonnet syndrome isn't widely known. Many people worry about what the hallucinations really mean and, they fear they may be developing a serious mental health problem or dementia.

CBS can also cause practical problems. People who see complex hallucinations may find it difficult to get around. Streets and rooms may be distorted, and brickwork or fencing may appear directly in front of them, making it difficult to judge exactly where they are and whether they can walk straight ahead. Some people can overcome this problem by having better knowledge of their surroundings.

charles-bonnet-syndrome

Prognosis For Charles Bonnet Syndrome

While there is no cure for CBS, the hallucinations often improve over time, plus the episode may get shorter and less frequent.

Recent evidence suggests most people will still have occasional hallucinations 5 years or more after they first started. It helps to understand that the hallucinations are a normal occurrence with vision loss, and they are not due to a mental health problem.

There is no specific medication for CBS, but sometimes medications used to treat epilepsy, Parkinson’s disease or dementia will help some people. These medications do have side effects, so that is a consideration.

Self-help Remedies

There are some things that can be done to help relieve the hallucinations. When a hallucination begins you can:

  • Try changing the lighting conditions to see if it disappears
  • Try moving your eyes from left to right, once every fifteen seconds without moving you head, then pause for a few seconds and then, repeat
  • Try staring at an image, then blink rapidly or reach out to touch the vision for a few seconds
  • Move around or perform a task, like making a cup of tea
  • Try to stay well-rested as the hallucinations will be worse when you are tired or stressed

Depending on the severity of the condition, treatment may include:

  • Talk it over with your doctor or a counsellor
  • Vision therapy may help as low-vision rehabilitation can ease the symptoms
  • Moving your eyes – some people report that the hallucinations dissipate if they move their gaze from side to side or up and down
  • Try altering the environment or setting that you are in by turning on the light, if your eyes are open, shut them or open the curtains.

Judith Potts and Fight for Sight against Charles Bonnet Syndrome

Complications of Charles Bonnet Syndrome

Since a person with CBS has no control over their hallucinations, they may have issues in their everyday life due to:

  • The hallucinations overlay images of the real world, so the person may have trouble negotiating everyday tasks, such as walking through an unfamiliar environment.
  • The person may not know initially whether the image is real or imagined, and it can be frightening if they are seeing something like a stranger in their home.
  • Seeing things that aren’t there is distressing, even if the images are pleasant.
  • The person may fear they are going mad or exhibiting signs of dementia.

In many cases CBS will resolve between twelve and eighteen months without any treatment. If you can understand this condition it will help to resolve anxiety and the feeling of helplessness. The problem is there is not a cure.

Some people have reported an increase in hallucinations with fatigue, so get enough rest. Reduce anxiety through exercise, meditation or whatever you find helpful. As with any medical disorder, living a healthy lifestyle will probably help.

References

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

© 2021 Pamela Oglesby

Comments

Pamela Oglesby (author) from Sunny Florida on April 28, 2021:

Hi Adrienne,

Most people are not aware of this syndrome, which is a shame really. It was named by Charles Bonnet so long ago, but I think it is just not that common.

Thank you for your comments. Stay healthy!

Adrienne Farricelli on April 28, 2021:

I wasn't aware of Charles Bonnet Syndrome until now. I wonder how it must have impacted people suffering from it in the past before we were even aware of this condition.

Pamela Oglesby (author) from Sunny Florida on April 27, 2021:

Hi Linda,

I am glad this article might be helpful to you. Most people who lose their vision do not have hallucinations, but it is good to know it is possible.

I appreciate your comments. Stay safe and healthy!

Linda Crampton from British Columbia, Canada on April 26, 2021:

Thank you very much for sharing this information. I’ve never heard about this syndrome before. I’m glad I’ve read your article because I know someone who is losing their vision.

Pamela Oglesby (author) from Sunny Florida on April 26, 2021:

Hi Kalpana,

I think most of us thought that hallucinations were only.caused by dementia.

Thank you so much for your comments.

Kalpana Iyer from India on April 26, 2021:

Very informative! And here, I was thinking hallucinations can only occur because of some kind of dementia. Thank you for explaining and educating.

Pamela Oglesby (author) from Sunny Florida on April 25, 2021:

Hi Cheryl,

This syndrome ios not well known, so the fact that it is new to you is not surprising.

I appreciate your comments. Blessings.

Pamela Oglesby (author) from Sunny Florida on April 25, 2021:

Hi Misbah,

I am really glad when a reader learns something neww. This syndrome is not too common.,

but I think it may be under reported.

Thank you for reading and commenting.

Blessings abnd love to you also

Misbah Sheikh from The World of Poets on April 25, 2021:

Pamela, you always teach me something new . I have never heard of it before. Thanks for sharing this informative article.

Blessings and Love

Cheryl E Preston from Roanoke on April 25, 2021:

You sure do enlighten us with so much new information. I had never heard of this. Thank you.

Pamela Oglesby (author) from Sunny Florida on April 25, 2021:

Hi Chitrangada,

What you say about the elderly is so true. Also, I think doctors don't always explain things very well to the elderly. While CBS is not terribly common, I do think it is probably under reported. There are many people with vision loss that do not have hallucinations.

I appreciate your very thoughtful comments. I hope you have a very good week.

Chitrangada Sharan from New Delhi, India on April 25, 2021:

Hello Pamela!

This is a well written and detailed information about a disease, I wasn’t aware of. Vision loss or poor vision is common in elderly people. But, hallucinations is something scary. There is bound to be disorientation, due to this.

Elderly people are not able to describe their health issues well, to the doctor, as I understand from some of the elderly in my family. Those taking care of them have to observe and understand the problem.

Thank you for sharing another excellent health related article, which will be beneficial to many.

Pamela Oglesby (author) from Sunny Florida on April 25, 2021:

Hi Mel,

I do think it is very possible that this syndrome is under reported. I would think it is easy to confuse CBS with dementia. Not everyone with vision loss gets hallucinations. Your mother probably does not have them or she would have said something. At least I hope that is true.

If any one could think of a great story here, it is you. We'll see what the future holds. I appreciate your comments. Have a good week, Mel.

Pamela Oglesby (author) from Sunny Florida on April 25, 2021:

Hi John,

Fortunately, CBS is somewhat rare. I think it would be very hard to live with those hallucinations. It is good to be aware of any disease or syndrome I think.

Thank you for your comments. I hope you have a good week.

John Hansen from Gondwana Land on April 25, 2021:

Pamela, I had never heard of this condition. It is good to know about. I could imagine suffers thinking they are going mad by hallucinating. Thank you for making me aware.

Mel Carriere from Snowbound and down in Northern Colorado on April 25, 2021:

Wow, you hit me with another whammy. My mother has really bad macular degeneration, so much so that she cannot take care of herself anymore. But she has never reported any hallucinations to me. Do you think it is possible that this syndrome is under-reported, because the people who have it might think others will think they are loonies if they talk about it? Now I'm going to have to ask my Mom. Great food for thought, here. Hmm...I'll bet there is a story in this.

Pamela Oglesby (author) from Sunny Florida on April 25, 2021:

Hi Urwa,

I am glad you find my articles informative. CBS is not to common, so I am not surprised you have not heard of it before.

Thank you for reading and for your comments.

Blessings

Iqra from East County on April 25, 2021:

Hi Pamela, you bring up the most informative medical topics. I have never heard of CBS, but after reading the article, it is really dangerous for old people. Pamela thank you for informing us of such diseases and giving us useful advice. Blessings

Pamela Oglesby (author) from Sunny Florida on April 25, 2021:

Hi Lorna,

I am sorry to hear about your father's problems. Dementia is hard to see in a loved one. Hallucinations could have been caused by CBS or the dementia I guess.

I am glad you found this article informative. I appreciate your comments. Have a good week, Lorna.

Lorna Lamon on April 25, 2021:

Hi Pamela,

A fascinating article and this is a condition my father suffered with due to his dementia. We only noticed when he started to put out three dishes of food for a third cat we didn't have. It didn't seem to bother him, however, we had it checked out and this was the diagnosis. I did wonder if his dementia made it worse. Thank you for sharing this informative article.

Pamela Oglesby (author) from Sunny Florida on April 25, 2021:

Hi Fran,

Well, it is not too common, thank goodness. I am glad you learn new information from my medical article.

I have never written an article on kidney stones, so I can do that. Thank you so much for your comments.

Pamela Oglesby (author) from Sunny Florida on April 25, 2021:

Hi Liz,

There are two different types of macular disease, and it does not cause this problems. CBS can happen with any type of serious vision loss. It is not too common, but there are a small percentage of people affected.

I appreciate your comments.

Pamela Oglesby (author) from Sunny Florida on April 25, 2021:

Hi Bill,

I do think this syndrome would be very disturbing, and disorienting if it happened often for sure. Thank goodness it is not too common, as there is no cure.

Thank you for your comments, my friend. I hope you have a wonderful Sunday as well!

fran rooks from Toledo, Ohio on April 25, 2021:

Pamela, that is scary and I never heard of that condition. I learn something new from each of your detailed articles. Wonder if you could do an article on staghorn kidney stones.

Pamela Oglesby (author) from Sunny Florida on April 25, 2021:

Hi Peggy,

This is not a very common syndrome, thank goodness. I think the hallucinations would be disturbing. I wish there was a cure.

I appreciate your comments.

Liz Westwood from UK on April 25, 2021:

I have several friends who have macular disease, but I had not heard of this. You explain it very well in this interesting article.

Bill Holland from Olympia, WA on April 25, 2021:

I always learn something new from you, Pamela. In this case, the whole article was new since I've never heard of this. My goodness, that would be disorienting, wouldn't it?

Very interesting stuff! Thanks for the information. Have a wonderful Sunday!

Peggy Woods from Houston, Texas on April 25, 2021:

Hi Pamela,

You bring up the most interesting medical topics! I have never heard of CBS. I can fully understand how people could become frightened or disoriented if suddenly they start seeing things that are not really there. It is good that over time that these hallucinations seem to be less frequent. Too bad there is no cure.

Pamela Oglesby (author) from Sunny Florida on April 25, 2021:

H Flourish,

The people that have hallucinations with vision loss is not too large, but you may be right about your grandfather not wanting to talk about hallucinations. I think it might be embarrassing to some people, especially years ago. I am glad you found the article interesting.

I appreciate your comments, Flourish.

Pamela Oglesby (author) from Sunny Florida on April 25, 2021:

Hi Devika,

Most people have not heard of this syndrome. I am glad you read the article and learned about CBS.

I appreciate your comments. Take care.

FlourishAnyway from USA on April 25, 2021:

This is really something. On top of the challenge of diminishing sight (or blindness) ... hallucinations to? I don’t recall my grandfather having this. He was blind from macular degeneration but had a strong mind. However, he was a quiet man and I’m not sure if he would have shared what was going on if he did experience it. Very interesting article!

Devika Primić from Dubrovnik, Croatia on April 25, 2021:

Hi Pamela I have not heard of CBS. You provided me with interesting and in detail about this syndrome. The complications and facts about h ow one can notice CBS is clear to me and I understand your informative hub. Knowing there is no cure it is troublesome.

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