CBS online survey results (Part I)

Survey findings

Thanks to everyone who participated in late last year's online CBS survey. Here are the major results of the first half of the survey:

• 78% of responders were female and 22% male. Countries included New Zealand, Italy, Australia, USA, South Korea, England and Canada.
• Ages ranged from the early 20s to early 90s which again highlights that CBS can and does occur at any age.
• In answer to the question, Who formally diagnosed you with CBS?, only 22% received their diagnosis from an ophthalmologist and 15% from a neurologist. A staggering 49% did not receive a diagnosis for CBS from any qualified medical practitioner.
• The top four CBS images reported were:
1. Basic (geometric) patterns (59%)
2. Animals (48%)
3. Figures  (44%) 
4. Bright light (41%)

The first three are in line with previous research studies but 'bright light' is quite a revelation and unexpected. Historically, bright light has very rarely been recorded as a CBS symptom and suggests that this may have been largely overlooked as a CBS experience. 

• There were very sobering results to two questions tapping into awareness levels of CBS:

'When you (or your loved one) first began to have unusual visual experiences, were you already aware of CBS?'

• No, I had never heard of the syndrome (93%)
• Yes, I already knew of the syndrome (7%)

This is a stunning reminder of the extent to which CBS is being systematically overlooked as a matter worthy of attention within the eye consultation process. This finding was reinforced by the following question of the survey:

'Had the eye specialist ever discussed with you (or a loved one) the possibility of CBS occurring?'

• No, my eye specialist had never raised the topic. (85%)
• Yes, my eye specialist let me know about the syndrome in advance. (0%)
• Yes, my eye specialist told me about CBS but only after I / we first raised the issue. (15%)

Summary

Until and unless CBS is routinely incorporated within the eye consultation, then an unacceptably high level of patients (and their loved ones) will continue to be left in the dark as to their strange visual experiences.  

Afterimages: a lesser known aspect of CBS

Scot Muirden 

In the unusual world of CBS, there are all sorts of phantom visions that are encountered. Animals, buildings, figures and faces feature prominently in reading material but there are some lesser known aspects of CBS that people may not know of or have read about. One of these is the concept of afterimages. Everyone - at some point in their life - naturally experiences an afterimage. It can happen after looking at something very bright (like the sun) and then looking away. A replica of the vision usually lasts a matter of seconds; the afterimage quickly fades.

However, there are peculiar forms of afterimage which can be quite unsettling when experienced. Take for example Ivy who lives with macular degeneration. One Spring morning she is out in her garden admiring the recent blooms. A flower captures her attention: a white-petalled flower that bears a distinctive red dot at the innermost part of each petal. It resembles a kind of distorted Japanese flag. Later, Ivy comes back inside her home and is standing by her kitchen benchtop waiting for her kettle to boil. The bench top is white. As she takes in the whiteness, to her astonishment that white-petalled flower with inner red circles is now in perfect view. It's as visible now as it was when she had earlier inspected it.

 

<(The flower previously seen in the garden is now presenting on the kitchen benchtop.) 

 

This condition is known by the medical name palinopsia. It is derived from the Greek ˜palin' meaning again and ˜opsia', seeing. So it literally means ˜seeing again'. And this occurs even though the original image perceived has now long gone from view. That original image either persists - or reappears - in a different visual setting. In some instances, the person does not see just one but a whole row of multiples of the exact same image: such as seeing a row of identical yellow toasters above the TV. In the instance below, the person with palinopsia has seen the distinctive mural design and this has been cleverly transplanted onto a passing woman's jeans.

 

(Image kindly supplied by Victoria Hamilton) 

 

Palinopsia is not restricted to just this form though. In another instance, a bird moving across the visual field is seen as a series of distinct, individual images like separate frames from a cartoon or slowed down movie reel. For others, discrete separate images are not seen but rather an object is perceived that leaves a visual trail as it moves. This is like a reverberating echo of the image as illustrated by the video below.

 

(Video kindly supplied by Victoria Hamilton)

 

All these examples of palinopsia (afterimages) are recognised as a medical symptom of some form of distortion to normal visual processing. Palinopsia can occur from a wide range of medical conditions. These include: migraine, epilepsy (seizures), multiple sclerosis, brain injury (eg. stroke or tumour), high blood sugar (hyperglycemia), significant lack of sleep or a side effect of a prescribed medication.

Palinopsia can also be a component of Charles Bonnet syndrome although it may only comprise ~10% of all CBS experiences. With the more common form of CBS, the phantom images tend to bear no relationship to anything recently seen in everyday life. In fact, some even say that their phantom figure, object or pattern is unfamiliar to them. Yet with palinopsia, it is very familiar because the image was so recently seen.

Many CBS experiences of visual images have no real or clear relationship with the outside world. What makes palinopsia interesting is that these afterimages are drawn from recent, real life visual experiences. It's just that they're presenting out of place or warped in some fashion.

Summary

CBS is rich in its variety of visual experiences. Some only see a pattern or coloured blob in a small region of their visual field. Others are stunned by full panoramic views. In the mix too, are various forms of afterimages. If you (or a loved one) seem to be experiencing a form of palinopsia, be wary to automatically assume it is CBS. As palinopsia occurs for a wide number of medical conditions, it is advisable to consult a suitable medical practitioner to establish which may be relevant in your circumstance.

Tapping into the lived experiences of CBS

 An online survey

The Foundation has developed an online survey to help gauge what is actually being experienced by those living with the syndrome. We are doing this because we believe the community itself needs to be a crucial component of the CBS story. We'd like to learn what is happening in the hearts and minds of those living with CBS and to communicate that to a wider audience.   

The Foundation hopes you will get behind this survey and let others know about it. It's only as meaningful as those who participate and contribute. The results of the survey will be fed back to the community once the findings are known. 

Please click on the link below to be taken directly to the survey. Thank you in advance.

 

 https://www.surveymonkey.com/r/M5S98R7

 

(Image courtesy of Jasmin Gorsuch)