Charles Bonnet Syndrome -A Symptom of Glaucoma You May Not Know About

I had never heard of Charles Bonnet Syndrome until I began actively searching for a name that described the experiences an elderly friend was going through.

She had been blind for many years due to glaucoma and had apparently been seeing things for years. She hadn't told anyone because she was convinced that she was surrounded by evil spirits.

After a long time, she finally got up the courage to tell her family. Even though she had family members in the field of medicine, they still could not make head or tails of it and some of them even became frightened to be in her company when she spoke of the things that she saw.

Admittedly, when she spoke about the dozens of people surrounding her bed, digging all around her (what she thought to be her grave) as well as the beings listening to her every conversation and laughing at her menacingly, it gave me the shivers as well.

If to hear it described brought a feeling of foreboding to me, I thought, then she must be well and truly terrified every day.

And it was just as I thought. There were many days when I would speak to her where she would be in tears because 'they' would not leave her alone.

Some days she would spend rebuking them. Other days she would feel sorry for them.

Sometimes she would see an entire procession of people passing through her house on a pilgrimage. Other times they would all crowd around the house to shelter from the rain.

Every day they would be there.

They would not leave her alone.

After some extensive research on the internet, the eye disease that seemed to fulfill these symptoms was Charles Bonnet syndrome.

Charles Bonnet syndrome is a disease that affects the eyes and usually happens to people whose eyesight is deteriorating or who have lost their eyesight. Some people who have had strokes have also had Charles Bonnet syndrome.

The syndrome was named after Charles Bonnet in 1760. His grandfather had begun to see shapes, birds, and other things that were not there. Knowing that his grandfather was of a sound mind and also that his eyesight was deteriorating due to cataracts, Bonnet found it to be a condition of his macular degeneration and thus the term for the condition was coined.

Armed with this new information, the doctor was consulted and it turned out to be a correct diagnosis.

Doctors do not fully understand how Charles Bonnet syndrome happens. They know it has something to do with the brain and the messages it sends to the eyes, however there is no cure for it.

There have been patients who have been freed from the hallucinations after cataract surgery. Some have never had cataracts and still hallucinate.

There are certain medications that help to lessen the hallucinations such as Olanzapine, which is used to treat schizophrenia and bipolar disorder. It is an antipsychotic but person who suffer from Charles Bonnet syndrome are not phychotic at all.

Another drug used is Clonazepam. This is commonly used to treat people who have seizures or panic attacks. Again, those with Charles Bonnet syndrome do not suffer from these maladies.

Finally, Donepezil can also be prescribed for a person suffering from Charles Bonnet syndrome. This drug is typically used to treat patients suffering from Alzheimer's or some other form of dementia.

The above drugs do help, to some extent, the person suffering from Charles Bonnet syndrome.

Most of those who suffer from it will and do panic especially if they last for a long time. Some people experience hallucinations for a few minutes at a time. Others experience it for hours and for some, the hallucinations never leave. Keeping calm and stress-free helps to lessen the frequency of the visions for some people.

Charles Bonnet syndrome can be a very frightening disease and for those who have it, they may feel as though there is no relief.

Doctors have found that when the patient is well- rested and stress levels are reduced, the hallucinations decrease. Therefore it is advisable that the patient with this syndrome try to get a good night's sleep and refrain from stressful situations.

One exercise that has proven helpful is moving the eyes from left to right for 15 seconds without moving the head, pausing for a few moments and then repeating.This sometimes helps the visions to disappear.

Another exercise that has had good results is staring at the vision for a few moments and then blinking quickly in succession.

For those who can see, changing the lighting in the room may assist - if the room is bright, turn off some lights to make it dimmer, or if the light in the room is dimmer, make it brighter somehow.

For some, reaching out to touch the images makes them disappear as well.

Charles Bonnet syndrome is not as well known as it should be.

There are many who are suffering with eye problems such as cataracts and glaucoma, and may have experienced strokes etc. who are not told about the possibility of CBS. The result is a frightened person who thinks they have lost their minds.

Talking about CBS is the only way that more people can know about it.

If my elderly friend hadn't had the courage to speak up, then she would still be suffering alone with this, believing herself to be haunted.

How many people are there who have this syndrome but are afraid to say it because they weren't warned about it before?

Although there is no cure, just knowing about it can cause great relief for the person who is suffering from this mysterious syndrome.

Sources:

https://www.rnib.org.uk/eye-health/eye-conditions/charles-bonnet-syndrome-cbs

https://www.nhs.uk/conditions/charles-bonnet-syndrome/

https://rarediseases.info.nih.gov/diseases/10343/charles-bonnet-syndrome