A young Australian lives a nightmare after being struck by a rare neurological condition so severe it has been nicknamed the ‘suicide disease’, with no known cure.
Emily Mortonfrom Adelaide, South Australia, developed trigeminal neuralgia – a nerve pain condition that affects the face and head – shortly after a mild case of Covid-19 and a booster shot in February 2022.
She was a healthy, energetic 26-year-old woman who ran a successful wedding film company and worked part-time as a marketing coordinator.
She and her husband Andy had the perfect life: they got married in November 2020, bought a house and were on their way to starting a family.
But their world was turned upside down when Emily started suffering from what she described as a “severe toothache,” which quickly turned into a stabbing pain, so bad that she can now only sleep for an hour a night.
And it never went away.
“It’s like having acid poured on your gums and ice on your teeth all day while they’re being smashed with a hammer,” said Emily, now 28.
‘Every time I try to move, I get electric shocks in my cheeks and jaw on both sides of my face. Every time I speak, laugh, drink, touch my face, I get hit with electricity that leaves me breathless.’
Emily and Andy Morton (pictured) had the perfect life – they got married in November 2020, bought a house and were planning to start a family. But their world changed forever in February 2022 when Emily was diagnosed with a severe ‘toothache’
Emily has developed a ‘rare’ form of trigeminal neuralgia – a nerve pain condition that affects the face and head – and suffers from constant pain in her face, head and teeth
The condition is nicknamed “suicide disease” because sufferers experience so much pain that they “wish they were dead.”
The pain is constant and has spread to most of her teeth, making even basic tasks like brushing her teeth or having a conversation extremely difficult. She now has difficulty eating, drinking, relaxing, socializing and says her life has been put on hold.
“When I talk to someone, I have to pretend I’m not in terrible pain,” she said.
“This has essentially stolen my entire identity and taken away everything that gives life meaning. It may not be a terminal illness for me, but it is a life sentence. I’m told the research is decades away from finding a solution.”
For the past two years, Emily has been desperately trying to find a more detailed diagnosis and a cure.
She has visited countless dentists, neurologists, neurosurgeons, pain management physicians, ENT specialists, and oral surgeons, but no one can confirm exactly what she has or what is causing it.
The pain is constant and has spread to most of her teeth, making even basic tasks like brushing her teeth or having a conversation extremely difficult. She now struggles to eat, drink, relax, socialize and says life has been put on hold.
Her condition is “extremely rare” because the pain is on both sides of her face; trigeminal neuralgia usually only affects one side.
This makes doctors not confident enough to perform surgery or suggest treatment because they fear the situation will get worse.
A few months after the ‘toothache’ Emily got Covid again and had a ‘lightning storm’ of electric shocks.
When the pain in her tooth started, she went to the dentist because she thought it was something minor. The dentist took x-rays but found “nothing wrong” and sent her home.
But the pain persisted and grew worse, and Emily didn’t know what to do anymore.
“It’s like having acid poured on your gums, and you have ice on your teeth all day, and they’re being smashed with a hammer,” said Emily, now 28, (pictured with her mother, siblings and husband)
Over time it became so painful that she went back and begged the dentist to pull the tooth, but he refused because there was “no reason to.”
Over the next few weeks, the toothache continued and became more severe. It quickly spread to the rest of her teeth and she developed postural orthostatic tachycardia syndrome (POTS), extreme tinnitus and brain fog.
Emily has spent thousands of dollars travelling to Sydney, Melbourne and even Cyprus in a desperate attempt to find a treatment that will ease her pain. She has also tried various holistic approaches but nothing has worked.
She stopped working 11 months ago and the couple had to sell their home in June 2023 after struggling to keep up with mortgage payments on one income. They now live with Emily’s mother. Andy no longer works and is her full-time carer.
“It’s not pain, it’s torture. Hell on earth. My family has watched my world shrink, and at the center of it is pain. No medication helps, no painkillers. Every night I go to sleep knowing the next day is going to be just a little bit worse,” she said.
“This has essentially stolen my entire identity and taken away everything that gives life meaning. It may not be a terminal illness for me, but it is a life sentence. I’m told the research is decades away from finding a solution,” Emily said.
Emily has spent thousands of dollars travelling to Sydney, Melbourne and even Cyprus to seek treatment to relieve the pain (pictured here in Europe seeking suitable treatment)
The onset of pain and the lack of medical options left Emily in the “deepest, darkest depression” she could imagine. During those months, she was fortunate to have constant support from her concerned family.
The only hope she has left is a treatment that can relieve her pain by 50 percent.
“After being told for so long that Covid doesn’t cause this kind of pain, I came across a surgeon who does MRI-focused ultrasounds of the central medial nucleus of the thalamus and he gave me the opportunity to find some freedom from this pain,” Emily said.
“It’s not a guarantee, but it’s better than the ‘no hope’ I’ve had for two agonizing years. It has a chance of taking away some of the daily torture by interrupting the pain signals being sent by a certain part of the brain.”
Because the treatment is new, it is not covered by Medicare and will cost approximately $40,000.
Now she’s desperately relying on GoFundMe donations from friends, family and strangers to help pay for treatment, after draining her savings account from previous treatment attempts
Despite the traumatic ordeal, Emily remains positive and her entire perspective on life has changed forever
Now she desperately relies on GoFundMe donations from friends, family and strangers to pay for her treatment, after previous treatment attempts drained her savings account.
Despite the traumatic experience, Emily remains positive and her outlook on life is changed forever.
“Everything in life is infinitely more beautiful now,” Emily said.
“It gives you this crazy perspective and the littlest things give you joy, I just want to keep fighting. And life is worth fighting for.”
If you or someone you know is suffering, call Beyond Blue on 1300 224 636
In the bullet points you will find a link to Emily’s GoFundMe campaign
