Alison Henthorne was diagnosed after two eye operations
A woman with a vision issue experienced terrifying hallucinations – seeing images of alien faces, demons and animals. Alison Henthorne, 59, was diagnosed with Charles Bonnet syndrome after two major eye operations to fix a detached retina left her with blind spots.
Shortly after returning home, she began to see images of alien faces, demons and animals during her day-to-day life. Alison became terrified – despite being aware that the hallucinations were not real, she became scared she was “going crazy” – until her own research led her to information about Charles Bonnet syndrome. The rare condition is not a sign of mental illness or dementia, but is instead a result of the brain conjuring images to compensate for a lack of vision.
“I had an operation on my eye and then I started to notice creatures everywhere,” said Alison, who lives in Bedfordshire. “I’d see strange creatures with purple eyes – then I’d see another one floating around near me.
“I’d wake up and see what looked like alien beings coming towards me in my peripheral vision, as soon as I’d wake up and open my eyes. I even saw something that looked like a spaceship, firing out laser beams in the garden one night.
“It wasn’t just bizarre – it’s actually really scary and it made me really anxious. I was walking around thinking I was going crazy because I was seeing all this stuff everywhere.”
Despite knowing the images weren’t real, Alison became scared to tell her friends and family about the hallucinations – worried that they would think she was “crazy.” Searches online led her to articles about schizophrenia and dementia, but her only symptoms were the terrifying hallucinations. At her wits’ end, she even asked a priest to bless her and the house, in the hopes of making the hallucinations stop.
“I was so scared to actually tell anyone about it,” she said. “I thought I was going completely mad. I even got a priest in to bless the house and me because I was so scared.”
After months of struggling with symptoms, Alison attended a check-up appointment, after her initial appointments were delayed due to problems at the hospital. While trying to find a way to tell medical professionals, Alison’s research led her to a charity aiming to raise awareness of Charles Bonnet syndrome and she immediately felt a sense of relief.
“Just before I went back to the hospital, I Googled eye conditions, and Charles Bonnet syndrome came up,” she said. “I still didn’t know for sure until I went to see the consultant and I was still worried about telling him in case he thought I was crazy.
“I spoke to the consultant, who confirmed it was Charles Bonnet syndrome, but he offered me no advice or anything. Thankfully, I’ve been back to the hospital since and they are going to refer me to someone who specialises in eye conditions like this.”
Although there is no cure, Alison’s hallucinations have become less severe in the months since and she is now fighting to raise awareness of the condition and dispel some misconceptions about the syndrome.
“The whole experience has been absolutely terrifying and extremely bad for my mental health,” she said. “It’s not a mental health issue – it’s to do with the brain; it still thinks the eye can see.
“All these years I could see and now suddenly, I can’t – so the brain is trying to send images to the eye, but for some reason it sends bizarre images you can’t control. It’s a physical disease with a physical symptom and not knowing this can really affect people’s mental health.
“For me, perhaps it could have been recognised earlier, but it might not even have dawned on me that it was anything to do with my eyes. I want to make other people aware – I don’t want anyone to suffer what I went through.”