[Riverside-San-Bernardino] Fwd: [ACB-L] Blind People Experiencing Terrifying Hallucinations On The Rise During Lockdown

Thu Feb 25 19:52:13 UTC 2021

Amanda Winkler

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From: peter altschul <creatingcommonground at outlook.com>
Date: February 25, 2021 at 10:18:23 AM PST
To: ACB-L at acblists.org
Subject: [ACB-L] Blind People Experiencing Terrifying Hallucinations On The Rise During Lockdown
Reply-To: ACB-L at acblists.org

Blind People Experiencing Terrifying Hallucinations On The Rise During Lockdown
Gus Alexiou Contributor Forbes
Disturbing news emerged last week that incidences of blind people experiencing distressing hallucinations have increased during the national lockdown periods that have dominated the past 12 months.
In a year where, at times, the whole of society has felt like it’s living through a horror movie, these reports come as an additional blow to a community that has endured particular struggles with social distancing and the fact that essential guided tactile assistance when out in public is currently considered unsafe.
The hallucinations are not solely associated with lockdown, they are a manifestation of a condition that is little known but was, nevertheless, first documented as far back as 1760.
Charles Bonnet Syndrome or CBS is named after the 18th-century Swiss naturalist and philosopher who noted his grandfather, with cataracts in both eyes, suffering from vivid hallucinations, despite being of sound mind.
Though much remains unknown about the condition’s underlying physiological and psychological drivers, experts believe it is exacerbated by tiredness and stress.
Last week, Consultant Ophthalmologist Professor Mariya Moosajee told the BBC, "The main triggers are loneliness, reduced exercise, exposure to chronic depressing news - all things we are seeing in lockdown."
This is further supported by the U.K.-based charity the Royal National Institute Of Blind People, who report a 50% spike in calls about the condition to its national helpline.
Additional research from University College London found that half of patients with CBS, which is believed to affect around 1 in 5 patients with severe sight loss and occurs more commonly in older patients, stated that their hallucinations had become more sinister during lockdown and 50% said they were now more frequent.
The rare condition was recently featured in the popular British soap opera Coronation Street.
"Seeing" with the brain
The hallucinations are ascribed to neurological changes in the way the eyes and brain communicate during the course of various eye diseases, such as Age-related macular degeneration (AMD), cataracts, glaucoma and inherited retinal disorders.
Kings College Neuroscientist Dr. Dominic Ffytche, the sole globally-acknowledged expert on Charles Bonnet Syndrome told The Mirror, “The nerve cells in the retina send a constant stream of impulses along the visual pathways, which are passed to the visual parts of the brain.”
"If the retina is damaged, the stream of impulses reduces. Paradoxically, the response of the brain is not to reduce but rather increase the cells firing, and it is this increase that causes hallucinations.”
Also described by some as the sight loss equivalent of an amputee experiencing a “phantom limb,” the loss of vital brain signals to dampen down and regulate electrical activity in the visual cortex, can cause visions lasting for anything from a few seconds, to several minutes at a time.
The hallucinations themselves can be curious, even pleasant on occasions. People have reported “seeing” cartoon characters, unicorns, bubbles, rainbows and beautiful landscapes.
Other images, such as floating musical notes, grids, shapes, mosaics and lettering and mathematical equations appearing on the wall at home, sound somewhat psychedelic but not necessarily disturbing.
Living in a horror movie
It is, however, the increased prevalence of sinister hallucinations during the long dark months of lockdown that are of greatest concern.
Ghost faces, staring eyes, snarling devil dogs and zombies with blood dripping from empty eye sockets have all been cited.
Strange apparitions, gargoyles, Big Cats roaming the garden and figures dressed in period costume have also been observed.
Thankfully, the brain appears to be aware that what it is sensing is not real but as this first-person account demonstrates, the limitless nature of the human imagination means that some people experiencing CBS might journey to some very dark places.
Relaying his personal account of CBS on the National Eye Research Centre website, Dr Amit Patel, who lost his sight in 2012 due to a hemorrhage in both eyes stated, “My personal hallucination is of a young woman covered in blood, mud, and tears.
"She stands in a terrifying silence and she follows me everywhere – on the train, on the tube, in the street. My wife has even heard me shouting at her in my sleep. My guide dog Kika can sense when I have a hallucination and she very sweetly puts her head on my knee to comfort me.”
Hallucinations, particularly the more frightening ones, can cause a surge in anxiety but there are very real physical hazards too, such as an increased risk of falling in the street or down the stairs if the hallucinations appear suddenly.
Another sad aspect of Charles Bonnet syndrome is that individuals often suffer in silence. Due to the older age profile of most patients, some fear that the strange images are unrelated to their sight loss but are, instead, an early indication of dementia.
Talking helps
Five years ago, Judith Potts launched Esme’s Umbrella, an organization dedicated to supporting those living with Charles Bonnet Syndrome, in memory of her late mother, who immediately feared mental illness after experiencing the symptoms of CBS.
"People who develop it think immediately they've developed a mental health condition," Potts said in an interview with BBC News.
"So, they don't confide in anyone and they live in their world of uninvited images, it's utterly terrifying."
To make matters worse, for those that do disclose, many General Practitioners and medics are unaware of CBS and therefore initially suspect their patient may be experiencing a form of psychosis.
However, Professor Moosajee is unequivocal in stating that there is no debate surrounding how very real CBS is.
"Ophthalmologists should all be aware of CBS. We are all taught about CBS and there is no myth about it,” she explained in a previous interview.
Later she continued, "We definitely know it affects patients and if people are misdiagnosed, then that is probably coming from non-ophthalmologists who are not aware of the condition.”
If anything good is to arise from this latest surge of CBS cases, it might be that both public awareness and that of non-eye specialist healthcare professionals increases.
There is currently no cure for Charles Bonnet Syndrome. Although, some medications, such as anti-depressants and anti-epileptic drugs, are sometimes used to reduce the symptoms.
With practice, patients might be able to come up with their own strategies to make the hallucination go away. These might include adopting specific eye movements such as rapid blinking.
Reaching out towards the image, leaving the room, altering the lighting and creating a distraction by switching on the TV or radio may also be effective.
People experiencing CBS are certainly encouraged not to suffer in silence. Instead, they should reach out to friends, family and healthcare professionals, as well as specific support networks and charities like Esme’s Umbrella and RNIB, where they can also share their experiences with others living with the condition.
Further research is needed to better understand the physiology behind CBS and this will likely include larger-scale clinical studies comparing the MRI scans of patients with sight loss who report the symptoms of CBS with those who do not.
In the shorter term, it would be hoped that for those unfortunate patients currently feeling like they have been living in a horror movie over the past year, relief may not be too far away.
With national vaccination programs continuing apace and governments beginning to talk about the early stages of a Covid-19 exit strategy, perhaps the phantoms of the mind’s eye will slowly recede, once the all too real nightmare that has been enveloping the outside world for the past year does the same.
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