[NFBF-L] FW: Blind People Experiencing Terrifying Hallucinations On The Rise During Lockdown

[Sherri Brun]

Thanks for posting this.  I have known several people with the syndrome.  We
had a caller on our Thursday Rise and Shine with Newsline group for awhile
who experienced it.  I didn't know about the scary hallucinations though.
How sad!

 

Sherri

 

From: NFBF-L <nfbf-l-bounces at nfbnet.org> On Behalf Of Kaye via NFBF-L
Sent: Saturday, February 27, 2021 10:22 PM
To: 'NFB of Florida Internet Mailing List' <nfbf-l at nfbnet.org>
Cc: kaye.j.zimpher at gmail.com
Subject: [NFBF-L] FW: Blind People Experiencing Terrifying Hallucinations On
The Rise During Lockdown

 

I usually don't post forwards, but found this article fascinating.

 

 

From: Geoff Eden <geden1 at cogeco.ca <mailto:geden1 at cogeco.ca> > 
Sent: Friday, February 26, 2021 1:05 AM
To: undisclosed-recipients:
Subject: Blind People Experiencing Terrifying Hallucinations On The Rise
During Lockdown

 

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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