For my first post, I would like to quote for you the experiences of one my patients Barbara Price, who has advanced glaucoma. She has painstakingly described her frightening symptoms. We hope this will be of interest to other sufferers.

Encounters With Charles Bonnet Syndrome

A Brief History. Having visited two different opticians in one year and spent a large sum of money trying to replace my glasses; without success I went to a third. Her examination was much more thorough. She advised me to see an Ophthalmic Consultant, this was at the end of 2005. In 2006,  just after my 74th birthday I met my consultant and was told that I had low pressure glaucoma. Optician number two had said that my eyes were “peaky” but had not said more. I had been irritated by his patronizing manner and he seemed unable to clarify “peaky”. In retrospect  I should not have used his prescription his glasses were of no use.  In the last six years my Consultant has used his considerable skill to care for me. The glaucoma was already too advanced when I saw him first for any surgery to help the condition. Subsequently, I have had both cataracts removed and laser treatment to both my eyes . I had kept rigidly to the drop routine prescribed. In spite of all possible care, I lost most of the sight of my right eye, much to the disappointment of my Consultant and to my distress.

Present State  (What I am able to see) I have no peripheral sight. Everything seen appears to be behind a fine net curtain. Right eye, I see only bright light and small areas very close to the source of light. Left Eye, looking straight ahead. Viewed as a clock face, I see nothing below 9 and 3 unless I look down. I have a small window of misty sight between 10 and11 and 2 and 3. Looking at a black computer screen with large bright yellow print, I note that a third of the screen on the right, (blind side) the letters appear to slope upwards. In  the mirror I can see either eyes, or nose or mouth, but no two or three features together. My right eye also appears higher than my left eye.  When holding two small pills in my left hand at waist level, one on the palm, the other on my fingers, I am not able to see them both together.  When skies are grey then rooms are dark; light from the ceiling makes little difference. When there is bright sun then I am dazzled, this can be painful and wearing strong sun glasses is essential. My first hallucination happened in a supermarket in 2008. It took the form of an avalanche of milk chocolate, containing bright coloured lights: pink yellow blue green and white. The mass quickly appeared to cover all displays in such a thick goo,  that I could neither reach through it to find what I wanted, or reach to put some item back. Possible duration up to 10 seconds, but seemed to be much longer. I did not know about Bonnet at this time. My explanation  was, too much strong coffee before I grabbed my trolley, left my friend and anxiously shopped while bumping into people and posts as I went. This hallucination is the most common and can occur up to 5 times in one trip. The triggers always have the same components, namely, bright light masses of multi coloured shapes and movement. This was especially apparent at Christmas with me being pushed round shops in a wheelchair at speed. No new hallucination happened for three years.  The second and now the most persistent  began in July 2011 and concerns travel. I was being taken out to lunch by friends in their car. The car appeared not to stop at traffic lights. The grass verge on the right appeared in the middle of the road in very reduced space.  Our road appeared no more than a ditch lined by tall trees or walls. In fact there were houses and shops. Coming home it seemed that we were going to crash into my son’s car sitting on the drive. As we got close to his car, green plants appeared to be growing round the wheels and out of the windows. His car is 15 months old. There has only been one way to deal with this. I close my eyes when I get in the car and don’t open them until we have arrived at our destination.This has been a disturbing hallucination. My biggest challenge is walking without holding on to an arm, without fixing my eyes on the ground and without the ever present fear of falling over. A month ago and to my great joy I was able to solve this problem. I bought a four wheel, pushchair type walker with a seat to rest when I get tired. I am able to walk upright with reasonable speed and with no fear of falling. My circulation and breathing has much improved already, also my posture is more relaxed. When walking along a path with grass to the right of it the grass appears to stand up almost vertically. Where it breaks away from the path a very deep hole is created. If my stick slipped over the edge of the path I found myself physically jumping, even though I was holding a strong arm and knew that the hole did not exist. There are times when the path seems to reach up in to the sky. This hallucination happens when I am in a strange environment and feel some anxiety.  The final group of hallucinations have appeared in small groups while I have been sitting in my sitting room. They last for only a few seconds but can repeat three or four times. They seem like acts in a Circus. Time, mostly mid afternoon when my eyes are getting tired. With eyes closed everything in the room turned cerise pink another time it was green. A magnificent Irish wolf hound sat on my lawn. All moving objects appeared by my better seeing eye. Three small girls, dressed in pink and white dresses played by my left foot, they rather fidgeted which was really irritating. A bright green fence moved like a graceful mobile. Fine and pretty piles of bricks bend and sway like sea creatures held fast to the seabed. When sitting in bed a large red double decker bus turned round beside the bed, there were no crashes. As I wake up, on several occasions, my bedroom door seems to swing open or a window frame moves. In the garden a tiger walked beside my son who was carrying a watering can.  The final group of fearful faces came as part of a circus type performance and there were three of these shows. With eyes closed each time, human skin appeared, followed at once by a bump under  the skin, then a closed eye. I was then looking at a cheek bone and an eye which rapidly aged. The bone sharpened and the eyes fell out leaving skeletal sockets some with moss hanging from them. There was never a nose and only once a mouth which aged in the same horrible way. I saw these last in December 2011, hopefully they will not return. The only hallucination to appear at the moment, when I am tired, is a small brown owl, who comes and sits for a second or two above my right eye.  Before writing about my experiences I did not choose to look at what others have said about The Bonnet Syndrome. Now is perhaps a good time. I am happy that the number of incidents has diminished. I remain, however, fascinated by the objects seen in the hallucinations and even more so by the triggers that set them off. Should they all come back I hope that I can be kind and understanding of my mind that I am quite sure is trying to make sense of what I see.

March 2012