An Australian woman diagnosed with what's been described as the 'world's most painful condition' has shared the unexpected first symptom she experienced in her mid-20s.
Emily Morton, from Adelaide, was just starting out life with her new husband, Andy, when she began to experience the first symptoms of a condition that would take multiple health professionals numerous different tests and scans to figure out.
Instead of starting her own family, as she'd hoped to be doing at that point, Emily was subject to a series of brain scans and blood tests, before eventually being diagnosed with atypical trigeminal neuralgia, which is a variant of another condition, classic trigeminal neuralgia.
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What is trigeminal neuralgia?
According to the Mayo Clinic, trigeminal neuralgia is a condition that causes intense pain, similar to an electric shock.
It usually affects one side of the face by triggering the trigeminal nerve, which carries signals from the face to the brain. Even something as typically painless as brushing your teeth or putting on makeup may trigger a jolt of pain due to the long-lasting condition.
Why is Emily's condition different?
While classic trigeminal neuralgia is usually limited to one side of the face, Emily instead experiences pain all over her body.
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When she was diagnosed, doctors described the condition as the 'most painful condition known to medicine', news.com.au reports, and while classic trigeminal neuralgia can be managed with some medications, there's little doctors have been able to do to help Emily.
What was Emily's first symptom?
Speaking to news.com.au, Emily recalled that she first noticed something was wrong in 2022, when she began to experience a strange nagging pain in her teeth.
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Given the location of the pain, Emily naturally went to visit a dentist - however, they couldn't see a reason for her discomfort.
Within a matter of days, the pain spread to Emily's entire face.
She recalled: “Imagine having a dentist drill into every single one of your teeth 24/7 and there is nothing you can do to stop the pain. I began experiencing electric shocks going through both sides of my face, triggered by anything that touched my face.
“It would hurt when I smiled, talked and ate. All normal things. There are no words to describe this degree of pain.
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“It is like being struck by lightning, it makes you want to fall to the ground and scream.”
Can the condition be treated?
More than two years on from her initial diagnosis, Emily is still hoping for answers and solutions to her pain. She has no idea why she contracted atypical trigeminal neuralgia, and her family has spent 'thousands of dollars' trying to find both a cause and a treatment that will work for her.
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“We’ve travelled interstate and even overseas in an effort to get me some kind of quality of life," she said. “It feels like a race against time to find out why. The condition has taken everything from me. It takes over my entire existence.
“My entire life is on hold while I search for something to give me relief. I just take it day by day and hold on to hope.”
Emily and her husband now live with Emily's mom, as the 28-year-old is no longer able to work.
However, a new type of neurosurgery being offered in Australia, called an MRI Guided Focused Ultrasound, may offer some hope for Emily as it could use groundbreaking techniques to interrupt pain signals to the brain.
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The procedure costs over $40,000 AUD ($24,800) plus travel and rehabilitation costs, so Emily's sister has set up a GoFundMe page to help cover the costs. At the time of writing (December 31), the page has raised more than $23,720 AUD ($14,700).
Emily has said she's 'blown away' by the support she's received so far, and if the research leads to a cure for the condition, she hopes to become a 'fierce advocate for people with invisible ‘mystery’ illnesses'.
“I want them to know that they are not alone, I want them to hope and trust in the science that is emerging, and I want us to come together and fight for better healthcare," she said.
If you'd like to donate to Emily's GoFundMe, you can do so here.
Emily Brown