A MUM has told how she lives plagued by a rare condition dubbed ‘Alice in Wonderland syndrome’.
Layla Chester experiences the terrifying sensation that she is growing larger while the world around her “shrinks” and time “stands still”.
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Todd’s syndrome, which is also known as Alice in Wonderland syndrome, is a neurological condition that causes disturbing sensations to sight, touch, and time.
Named after the famous children’s tale, the rare syndrome can make things look and feel larger or smaller than they actually are and distort a person’s sense of reality.
Layla, 46, first experienced the bizarre symptoms after going to bed with a migraine during the pandemic.
When she woke up, her depth perception was distorted, which she described as “looking through a telescope backwards”.
Read more on rare conditions
It literally feels like my body is growing and there’s nothing I can do to stop it.
Layla Chester
She says that episodes can last up to a few hours and are triggered by migraines and tiredness.
Layla says she “literally feels the sensation” of her body expanding.
The mum-of-two had to sell her dream car in case an attack came on while driving.
She takes three tablets a day to manage her condition, but Layla admits she still “lives in fear” of an attack, which can leave her feelings “distressed, confused and embarrassed”.
The supermarket worker, from Hereford, Herefordshire, said: “It’s really hard to explain, but when an attack is triggered, it’s awful.
“It literally feels like my body is growing and there’s nothing I can do to stop it.
“I have no perception of distance, so I can’t walk.
“I had to sell my dream car, because I can’t drive anymore in case it happens while I’m behind the wheel.
What is Todd’s or Alice in Wonderland syndrome?
NAMED after Lewis Carol’s iconic storybook heroine, Alice in Wonderland syndrome is rare neurological condition that disrupts the brain’s ability to process sensory input.
The disruption affects how you perceive the size of things you see around you, the feel or look of your own body, and can also distort your sense of reality.
An English psychiatrist called John Todd named the syndrome in 1955.
It can affect people at any age, but research suggests that it mainly occurs in children and teens.
There’s very little available research on the condition because it’s mostly temporary.
There are three types of symptoms caused by Todd’s syndrome:
- Disturbances in self-perception: having trouble correctly perceiving the size and feel of your own body (either the whole body or just specific parts). It also changes your sense of reality, your ability to feel connected to your body and your emotions, and the passage of time. This form makes up about 9 per cent of cases.
- Disturbances in visual processing: affecting how your brain processes what you see around you. This is the most common form, making up about 75 per cent of cases.
- Combined symptoms: when you experience symptoms that affect both your self-perception and visual processing.
Possible causes include migraines, bacterial and viral infections, seizures, certain types of strokes, mental health conditions like schizophrenia and certain medications and drugs.
Source: Cleveland Clinic
“My perception of time is also affected.
“I can be having a conversation and then suddenly it’s like time has slowed down or stopped and I can’t keep up with what’s being said.
“It’s like there’s a delay on the phone, and I’ll answer questions behind time.
“I sometimes disassociate – I’ll stare into space and it’s like I’m completely gone.
“It’s really scary and bizarre.”
‘UPSIDE DOWN’
Layla, who is mum to Lewis, 23, and Ax, 18, says her life was “turned upside down” when she woke up one morning in July 2020, with distorted vision.
Fearing she had a brain tumour, Layla consulted her GP, who was left “stumped” by her peculiar symptoms.
“I was convinced it was a tumour,” Layla said.
“It was during Covid, so I had an over the phone appointment, and my GP had no idea what was wrong with me.
“I was referred to a neurologist, and after a brain scan and a lot of back and forth I was finally diagnosed with Alice in Wonderland syndrome.”
Layla’s ‘Alice in Wonderland syndrome’ – named after the experiences of Lewis Carol’s famous protagonist – has had a huge impact on her life.
She is no longer able to drive, and her confidence and mental health have been seriously affected.
Layla has no idea when an attack will occur, so she is constantly “on edge” just in case.
I thought I was growing and everything around me was shrinking, and to help calm me down my mum handed me a cup of tea in an Alice in Wonderland mug
Layla Chester
She said: “It’s really embarrassing when it happens while I’m at work – I have to stop what I’m doing and sit down somewhere quiet and wait for it to pass.
“Sometimes when I walk down the aisles of the supermarket that I work in, it feels like the shelves are closing in on me.
“It feels so real.
“I once had an attack at my mums house, where I thought I was growing and everything around me was shrinking, and to help calm me down my mum handed me a cup of tea in an Alice in Wonderland mug.
“That really freaked me out!
“Sometimes I experience olfactory hallucinations, which means I can smell something that’s not there.
“I’ve woken up in the night thinking there’s a fire, but there’s nothing there!”
Layla has since set up a TikTok account and built an online community for other people who also suffer with the condition.
Layla said: “I set up a TikTok, and speaking to other people with Alice in Wonderland syndrome has really helped.
“I’m not going crazy, it’s very real and isn’t just happening to me.”
Layla has been living with the syndrome – – for four years.
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