Dr. Annmaree Watharow lives in Sydney, Australia. She has Usher syndrome (dual sensory loss) and around the time she started to lose her vision, Charles Bonnet syndrome commenced and has continued ever since. Annmaree was trained as a doctor and currently is working as a Research fellow at the University of Sydney [Centre for Disability Research and Policy]. This is her story which has been kindly shared with the Foundation. The accompanying pictures are depictions of her CBS experience.

Living with CBS  by Annmaree Watharow

For forty years I have lived with a well-dressed man. He has dark hair, an indistinct face and wears a very smart black suit with a white shirt and a burgundy tie. The dark suit is double breasted with shiny buttons that sparkle in the sunlight. He is not real. He doesn't have a face but he has been visiting me for almost forty years.

At first, for a long time, I didn't know what he was doing popping out at me in all sorts of places: dim, romantic restaurants, dark hallways, alleyways at night, in the street. In Sydney, in Melbourne, in Toronto, Ontario, in London, France and Hong Kong. If I travelled so did he. I knew he wasn't real, but I didn't know precisely what it meant. That was seeing people that weren't real. I was reasonably confident my brain was working just fine but then people with serious mental illness believe this too, so how could I really tell?

I noticed my vision deteriorating when I was fourteen or fifteen years old. I told three ophthalmologists in one year I couldn't see at night. They told me to eat more carrots. I told them I kept falling over and into things like ponds, jetties and rubbish bins. They said go to a physiotherapist for clumsy people, we can't help you. The man in the dark suit kept springing out at me no matter what I did or anyone said.

When my medical training finished, I moved quickly from hospital work (night shifts were too difficult) to being a therapist in the community. The man in the dark suit came to work with me sometimes (you just never knew when). One day I read about Charles Bonnet syndrome, about how Bonnet's grandfather had these spectacular ˜fictions of the mind' where he saw, as if they were real, horses and carriages and fine ladies on streets. This grandfather was blinded with severe cataracts. Aha. I thought. This is it. Low vision? Check. Visual hallucinations? Check. Intact brain function? Check (I hope).  

Never have I been asked about seeing the unseen by any doctor of any sort. And that's terrible. So much secret worry could be avoided if the professionals looking after us knew more, investigated well and reassured most of us. I am lucky my man in the dark suit isn't frightening in himself, he gives me a brief startle when he jumps out at me but that is more because as women, we are rightly wary of strange men in dark places.

Image: Watercolour painting of man with no face in a grey suit and burgundy tie.

I have other visual hallucinations that started more recently, in times of stress such as jet lag and being unwell. The first is when I kept seeing weird times on my large font analogue watch: first it was eleven ten, then five minutes later it would be a quarter to three. The time changed (wrongly so) every time I looked at it. I could only tell the time if I looked at the digital time on my phone. So, this was easily solved. I got a digital watch and never wore an analogue one again.

The next hallucination took place in a bar in New York City. I had just arrived and was exhausted from what felt like two days of non-stop travel. At first, I thought my drink was spiked when I began seeing little palm trees everywhere; in the bar, the street, my hotel room. I knew then this was CBS. It can be tricky crossing roads when the pygmy palms take over the place but I am usually with someone who can't see them so all is well. I don't mind these palm trees; they are bright green and cheerful when there aren't too many of them. In a hotel recently, I saw them again, strangely spaced out and orderly. I told my husband the palm trees were out and about again. He laughed and took a photo of the wall showing the palm tree covered wallpaper! So very occasionally CBS is not responsible.

Image: Oil pastel picture of pygmy palms scattered around a New York bar. Far right image: Photo of palm tree wallpaper

What we need are: 

1. Advance warnings that CBS can happen to any of us with low vision from whatever cause
2. Our health and wellbeing professionals need to be aware, educated and proactive in asking us are we seeing any strange things? Then carefully listening and investigating, and then reassuring us.
3. Our health care professionals also need to actively ensure we are getting the support we need to live with low vision, to enjoy life and achieve goals.  
4. For the few for whom CBS is overwhelming, terrifying, sleep interrupting and life disrupting, better research is needed to work out the best treatments. At the moment so much is trial and error. Luckily however, most of us will learn to live with our men in dark suits, funny clock faces and palm trees.

Annmaree has a new book coming out later in the year that focuses on dual sensory disability. One chapter from that book will focus entirely on Charles Bonnet syndrome. The Foundation will provide updates once the work is published. 

Australian PhD candidate, Vicky Hamilton, of Griffith University in Queensland is now in the latter stages of her CBS study. Her work is scheduled to be completed sometime in the new year. 

One of the facets of her study is to collect people's personal accounts of their CBS and try to depict those visions in a way that can be made accessible to a wider audience: for example, an installation display at an art exhibition. Vicky has very kindly made available to the Foundation a few snippets of her project, which will be featured over coming weeks. To learn more about Vicky's work, please visit:  https://cbsvisions.com/

The first depiction to be presented here is from subject 50 and the visions encountered in her bedroom:

 Hamilton, V.H. & Participant 50. (2024) Childhood Checkers [Video]

Subject 50's personal account that led to the above:

"Why am I seeing this, what is happening to me? I have sight loss but didn't associate it with that, until I told my optician what was happening. Once I knew what was happening, they were beautiful little drawings. A lot like those my grandchildren and children drew when they were young. It's usually when I wake up in the morning after I've got up and I'm coming back into the bedroom. The room, the ceiling, the wall, the carpet, and the bed is covered from top to bottom... it was like a checkerboard. All very brightly coloured: pink, blue, yellow, green, orange, and purple. The visions where pleasant once I realised what was happening."

Any queries relating to the study (including requesting permission to use any material) please contact one of the researchers:

Prof Andrew Brown

p “ (0)7 3735 6252

This email address is being protected from spambots. You need JavaScript enabled to view it.

Ms Victoria Hamilton

p “ 0408 723 276

This email address is being protected from spambots. You need JavaScript enabled to view it.

Medical treatments for CBS: the current state of play

Often when people look online for information about CBS - particularly possible treatments - they will come across comments that there is no treatment let alone a cure. At a general practitioner or specialist consultation, some patients are told, "there's nothing we can do for you". To read this online or to hear directly from a medical practitioner can be really deflating. However, these views are somewhat misleading because occasionally medical interventions are indeed effective.

[Image courtesy of Towfiqu Barbhuiya]

The Foundation wishes to outline the actual state of affairs when it comes to medically treating CBS:

1. The primary medical way of treating CBS is undertaking any viable procedure to improve a person's vision. An example would be cataract surgery. There are certainly case reports of a person's CBS completely disappearing upon vision improvement. Even so, two cautionary points need to be made. First, even when a medical procedure has led to the improvement of a patient's vision, there is no guarantee that it will resolve CBS. We don't know the percentages of people whose CBS has resolved after improvement of vision as no research has been conducted into this particular matter. Second, some eye conditions currently have no medical interventions available to the patient to improve vision. 
2. The second option is prescribed medication. There are five principal categories that these medications fall under: anticonvulsants (anti-seizure), antipsychotics, antidepressants, benzodiazapines ('sedatives') and acetylcholinesterase inhibitors (designed to block the break down of the chemical neurotransmitter, acetylcholine). All of these 5 categories have encountered some success with treating CBS and this has been reported in various medical journals. The problem is that no prescribed medication - from any of these 5 categories - is effective for the majority of patients. This means that a prescribed medication sometimes leads to complete resolution of CBS but the emphasis sadly is on 'sometimes' so the success rate of any of these medications is modest at best. 
3. Whether any of the above categories of drugs could be appropriately prescribed for an individual's unique circumstances would require the careful consideration of a medical practitioner. If you or a loved one is considering going down this path, it's useful to ask about possible side effects from such medications so one can make an informed decision. 
4. Aside from prescribed medications, there is a non-invasive medical procedure known as repetitive transcranial magnetic stimulation (rTMS). This relatively safe procedure introduces magnetic pulses to a specific region of the brain in order to adjust brain activity. rTMS is already widely used for treating depression, stroke rehabilitation and pain management. In Australia at least, for these conditions, the rTMS procedure is typically covered by the health care system (Medicare) but its usage for CBS is not presently covered. Consequently, this option may well mean out-of-pocket expenses and the costs could be quite steep. Preliminary exploration of rTMS for CBS patients has occurred over the past two decades and shows some promising signs. However, barriers still remain in terms of formal recognition, accessibility and affordability. In terms of countries outside Australia, whether rTMS is (partially or fully) subsidised by the government or one's health insurance premium would need to be clarified.
5. The above explores medical treatments currently available for CBS. There are non-medical options which can be explored too. Click here for more details.