Every day for nearly three years, Emily Morton has felt nothing but pain.
In the beginning of 2022, the Australian woman had the whole world at its feet.
The 28-year-old had recently married the love of her life, Andy, and the couple were getting ready to start their family.
But then Morton noticed that a strange pain had started emerging in his teeth.
She went to a dentist, who didn’t find anything wrong. Within a few days the pain became unbearable, spreading throughout his mouth and on both sides of his face.
“Imagine a dentist checking every single one of your teeth 24 hours a day and you can’t do anything to stop the pain,” Morton told news.com.au.
“I started feeling electric shocks on both sides of my face, which was caused by anything that touched my face.
“When I used to smile, talk and eat, it would hurt. All the usual stuff. There are no words to describe the extent of the pain.
“It’s like being struck by lightning, it makes you want to fall to the ground and scream.”
When dentists and doctors were unable to diagnose her bizarre condition, Morton underwent a series of brain scans and blood tests to get to the bottom of what she had experienced.
She was eventually diagnosed with atypical trigeminal neuralgia, a variant of classic trigeminal neuralgia.
This condition affects the trigeminal nerve which transmits signals from the face to the brain and can cause a jolt of pain even by lightly touching any area of the face.
While this usually involves only one side of the face, Morton was experiencing pain all over.
Doctors told him it was “the most painful condition known to medicine” – and basically nothing they could do to help.
This disorder is nicknamed the “suicide disease” because people who suffer from it are in so much pain that they often “wish they were dead”.
Morton said there are still no real answers as to how or why he got the infection.
“We have spent thousands of dollars trying to find the cause of the pain and effective treatments,” he revealed.
“We have traveled interstate and even overseas in an effort to bring some kind of quality to our lives.
“It feels like a race against time to find out the cause.
“The situation has taken everything away from me. It takes over my entire existence.
“My whole life is on hold while I search for something that will bring me relief. I just take it day by day and maintain hope.
Morton’s life has been turned upside down since the diagnosis, with her and her husband having to move back in with her mother as she is no longer able to work.
She has already sought treatments in Australia, each of which cost more than $15,000 ($9,300 US).
Morton also went to Europe for alternative treatments, but to no avail.
However, there is hope. A new type of neurosurgery is being offered in Australia called MRI Guided Focused Ultrasound.
She will be placed in an MRI machine where a groundbreaking technology delivers precisely focused ultrasound waves to a specific brain area called the thalamus to disrupt pain signals.
This gives him a 50/50 chance of getting some relief.
Unfortunately it is so new that it is not covered by Medicare and will cost more than $40,000 ($25,000 US) plus travel and rehabilitation costs.
His sister Rachel has set up a GoFundMe for Morton in hopes of raising enough money for treatment.
So far, they have raised a whopping $20,000 ($12,000 US).
“I am overwhelmed and extremely grateful to everyone who has donated, we are halfway to our goal,” she said.
“I am very hopeful that we will find a cure. In 2024, I believe there will be technology somewhere that can at least help.
“Then I plan to dedicate my life to becoming a fierce advocate for people with invisible ‘mystery’ diseases.
“I want them to know they are not alone, I want them to have hope and faith in emerging science, and I want us to come together and fight for better health care.”
Morton hopes to find a cure in the future, but for now he’s just trying to appreciate the little things and take life day by day.
“People who have this condition are honestly some of the bravest people to ever live on this earth,” he said.
“It is usually diagnosed after the age of 50. For those who are young, this is completely devastating.
“Although it is not a terminal disease, it still takes your life.”
