What is Charles Bonnet Syndrome? and why the photo of Abraham Lincoln? I'm glad that you asked! because that's what today's blog post is about.
I've been talking about eyes and complications on various platforms, lately, following the stopping of my long term eye medications. You might already know the deal with me; eye complications from T1D, surgeries, pressure, yadda yadda. You might have read or heard me talking about scotomas, too. However, I've rarely spoken about my experiences of Charles Bonnet Syndrome.
Who on earth is Charles Bonnet? A pretty interesting fellow, by all accounts. You could do some Googling to find out because I'm more interested in the syndrome than the person. Wikipedia says this about the man and the syndrome:
"
In 1760 he described a condition now called Charles Bonnet Syndrome,[7] in which vivid, complex visual hallucinations (fictive visual percepts) occur in psychologically normal people. (He documented it in his 87-year-old grandfather,[8] who was nearly blind from cataracts in both eyes but perceived men, women, birds, carriages, buildings, tapestries and scaffolding patterns.) Most people affected are elderly with visual impairments, however the phenomenon does not occur only in the elderly or in those with visual impairments; it can also be caused by damage elsewhere in their optic pathway or brain."
Hallucinations?! Yikes! It sounds pretty scary and, to begin with at least, it was. Let's rewind a decade, I'd recently had my first eye surgery and things hadn't improved. My ever decreasing vision was still very poor and I'd resigned myself to a long period, maybe life, of very limited eyesight. It was a dark period for me both mentally and physically. One morning, I woke to find, to my utter bewilderment, Abraham Lincoln walking by the foot of my bed. He looked directly at me and then sort of melted away into the wall. Strange, I thought, I don't remember taking LSD last night. At the same time, I was paralysed by fear. I remember staying in bed for at least 20 minutes trying to piece together what had just happened. Was I really awake?
The experience dominated my thoughts through the rest of the day. I had convinced myself that I was somehow half the way between waking and sleeping, that my lost eye sight had tricked my brain into being asleep and desperately trying to not worry about dementia or "going mad".
Some time went by, maybe a week or so, before it happened again. No visits from Lincoln, though. That's far too wacky! This time a far more realistic smile from Queen Victoria before she turned her head and vanished. That sparked a bunch of hallucinations which ranged from various Victorian age dressed people to my best friend sitting on my toilet, cheerfully exclaiming "Hello mate!" and disappearing - Although I couldn't hear him say it, it was simply "mouthed" at me.
By now, as you might imagine, I was getting a little worried for my sanity. Weirdly, I had stopped becoming frightened of the hallucinations and felt disappointed when they vanished. Perhaps seeing something clearly again was the reason for the "feel good" and my brain was releasing some kind of chemical.
Of course, I was unaware that I was experiencing Charles Bonnet Syndrome. It took a visit from a charity worker to explain that what I was going through was completely normal. He even asked the question "Old fashioned things?". I laughed out of relief and started to look forward to my next round of visits from a different century. Sadly, they never returned. It was as if my brain had worked it out and decided I no longer needed to be fed these images. Soon after that, more surgeries and the slow recovery of my sight began.
Head to the NHS website to read more about this syndrome and the hallucinations in detail. However, they're not dangerous, they are common for anybody of any age following sight loss, they do stop.
As always, I encourage everybody who has diabetes to attend their eye screening appointments. Please go to any follow ups and have any treatments offered to you.
Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!
