A young Australian man is “living a nightmare” after suffering from a rare neurological disease so terrible it is nicknamed “the suicide disease” and there is no known cure.
Emily Mortonfrom Adelaide, South Australia, developed trigeminal neuralgia (a nerve condition affecting the face and head) shortly after a mild case of Covid-19 and a booster shot in February 2022.
She was a healthy and energetic 26-year-old who ran a successful wedding cinematography business 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 her world was turned upside down when Emily developed what she described as a “bad toothache” that quickly progressed to a stabbing pain so unbearable she now can’t sleep more than an hour a night.
And he never left.
“It’s like having acid poured on your gums while you have ice cream on your teeth all day, all while having them smashed with a hammer,” said Emily, now 28.
“Every time I try to move, I get electric shocks on my cheeks and jaw on both sides of my face. Every time I talk, laugh, drink or touch my face, I get an electric shock that knocks the breath out of me.”
Emily and Andy Morton (pictured) had the perfect life – they got married in November 2020, bought a house and planned to start a family. But their world changed forever in February 2022 when Emily suffered a severe “toothache”.
Emily developed a “rare” form of trigeminal neuralgia (a nerve condition affecting the face and head) and suffers constant pain in her face, head and teeth.
The disorder earned the nickname “suicide disease” because sufferers feel so much pain 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 holding a conversation extremely difficult. She now struggles to eat, drink, relax, socialise and says her life has been put “on hold”.
“Every time I talk to someone I have to pretend I’m not in terrible pain,” she said.
“This has basically robbed me of my entire identity and everything that gives meaning to life. It may not be a terminal illness for me, but it is a life sentence. I’m told 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.
He has visited countless dentists, neurologists, neurosurgeons, pain management doctors, ENT surgeons, and TMJ specialists and no one can confirm exactly what he has or what caused it.
The pain is constant and has spread to most of her teeth, making even basic tasks like brushing her teeth or holding a conversation extremely difficult. She now struggles to eat, drink, relax, socialise and says life has been put “on hold”.
Her condition is ‘extremely rare’ because the pain occurs on both sides of the face; trigeminal neuralgia usually occurs on only one side.
As a result, doctors do not have enough confidence to perform surgery or offer treatment because of the risk of the disease getting worse.
A few months after the ‘toothache’, Emily contracted Covid again and experienced the ‘electrical storm’ of electric shocks.
When she started to feel pain in her tooth, she went to the dentist thinking it was something minor. The dentist took x-rays but found nothing wrong and sent her home.
But the pain continued and worsened, leaving Emily not knowing what to do.
“It’s like having acid poured on your gums while you have ice cream on your teeth all day, all while having them smashed with a hammer,” said Emily, now 28 (pictured with her mother, siblings and husband).
Over time, the pain became so intense that she returned and begged the dentist to pull the tooth, but he refused because “there was no reason to do so.”
Over the next few weeks, the toothache persisted and intensified. It quickly spread to the rest of the teeth, and she developed postural orthostatic tachycardia syndrome (POTS), extreme tinnitus, and mental confusion.
Emily has spent thousands of dollars on trips to Sydney, Melbourne and even Cyprus in a desperate attempt to find a treatment to 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 pay the mortgage 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 watched my world shrink and at the center was the pain. No medication helps, no painkillers. Every night I go to sleep knowing the next day will be a little bit worse,” she said.
“This has basically robbed me of my entire identity and everything that gives meaning to life. It may not be a terminal illness for me, but it is a life sentence. I’m told research is decades away from finding a solution,” Emily said.
Emily has spent thousands of dollars travelling to Sydney, Melbourne and even Cyprus in search of pain relief treatment (pictured in Europe trying to find a suitable treatment).
The onset of pain and lack of medical options left Emily in the “deepest, darkest depression” she could have ever imagined. During those months, she was fortunate to have the constant support of her concerned family.
The only hope left for her is a treatment that has a 50 percent chance of reducing some of her pain.
“After being told for so long that Covid doesn’t cause this type of pain, I found a surgeon who does focused MRI scans of the central medial nucleus of the thalamus. It gave me the opportunity to be free from this pain,” Emily said.
“It’s not a guarantee, but it’s better than the ‘no hope’ I’ve been given for two torturous years. It has the potential to alleviate some of the daily torture by interrupting the pain signals sent by a certain section of the brain.”
However, because the treatment is new, it is not covered by Medicare and will cost about $40,000.
She is now desperately relying on GoFundMe donations from friends, family and strangers to help pay for treatment after exhausting her savings account from previous treatment attempts.
Despite the traumatic experience, Emily remains positive and her entire outlook on life has changed forever.
She is now desperately relying on GoFundMe donations from friends, family and strangers to help pay for treatment after exhausting her savings account from previous treatment attempts.
Despite the traumatic experience, Emily remains positive and her outlook on life has changed forever.
“Every little thing in life is infinitely more beautiful now,” Emily said.
“It gives you an incredible perspective and the smallest things give you joy, so 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
You can find a link to Emily’s GoFundMe campaign in the bullets.
