I’m only 28 and suffer from a condition so agonising they call it the ‘suicide disease’. Now every moment of my life is hell – and there is NO cure: This is what could have triggered it

A young Aussie is ‘living a nightmare’ after being struck down with a rare neurological condition so horrific it’s nicknamed ‘the suicide disease’ – and there’s no known cure. 

Emily Morton, from Adelaide, South Australia, developed trigeminal neuralgia – a nerve pain 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, energetic 26-year-old running a successful wedding cinematography business and worked part-time as a marketing coordinator.

She and her husband Andy had a picture-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 developed what she described as a ‘bad toothache’ that quickly progressed into a stabbing pain so excruciating she now can’t sleep for longer than an hour a night.

And it never went away. 

‘It is like acid is being poured on your gums while simultaneously having ice cream on your teeth all day, all while they’re being smashed with a hammer,’ Emily, now 28, said.  

‘Electric shocks hit my cheeks and jaws on both sides of my face whenever I try to move. Every time I speak, laugh, drink, touch my face, I am struck with electricity that leaves me breathless.’ 

Emily developed a ‘rare’ from of trigeminal neuralgia – a nerve pain condition affecting the face and head – and suffers constant pain on her face, head and teeth 

The disorder earned its ‘suicide disease’ nickname because those who suffer it are in 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 having a conversation extremely difficult. Now she struggles to eat, drink, relax, socialise and says her life has been ‘put on hold’. 

‘Whenever I talk to someone I need to pretend like I’m not in horrendous pain,’ she said.

‘This has essentially stolen my whole identity and taken everything that gives life meaning. It may not be a terminal illness for me, but it’s a life sentence. I’ve been told that the research is decades away from finding a solution.’ 

Over the past two years Emily has been desperately trying to seek a more detailed diagnosis and cure.

She’s seen countless dentists, neurologists, neurosurgeons, pain management doctors, ENT surgeons and TMJ specialists and no one can confirm exactly what she 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 having a conversation extremely difficult. Now she struggles to eat, drink, relax, socialise 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 is usually only on one side. 

As a result, doctors aren’t confident enough to perform surgery or offer treatment due to the risk of it worsening. 

A few months after the ‘toothache’ Emily caught Covid again and experienced the ‘lightning storm’ of electric shocks. 

When the pain first began in her tooth, she went to the dentist thinking it was something minor. The dentist conducted X-rays but found there was ‘nothing wrong’ and sent her home.

But the pain continued and worsened, leaving Emily at a loss of what to do. 

‘It is like acid is being poured on your gums while simultaneously having ice cream on your teeth all day, all while they’re being smashed with a hammer,’ Emily, now 28, said (pictured with her mum, siblings and husband)

Over time it became so painful she went back and begged the dentist to pull out the tooth, but he refused because there was ‘no reason to’. 

Over the next few weeks, the toothache persisted and intensified. It spread rapidly 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 bid to find a treatment that eases her pain. She’s also tried various holistic approaches but nothing has worked. 

She stopped working 11 months ago and the pair had to sell their home in June 2023 after struggling to keep up with mortgage repayments on one income. Now they live with Emily’s mum. Andy no longer works and is her full-time carer. 

‘It is not pain, it is torture. Hell on Earth. My family watched on as my world shrunk, and at the centre is the pain. No medication helps, no pain killers. Every night I go to sleep knowing that the next day is just that little bit worse,’ she said. 

‘This has essentially stolen my whole identity and taken everything that gives life meaning. It may not be a terminal illness for me, but it’s a life sentence. I’ve been told that the research is decades away from finding a solution,’ Emily said 

Emily has spent thousands of dollars travelling to Sydney, Melbourne and even Cyprus seeking treatment to ease the pain (pictured in Europe trying to find a suitable treatment) 

The onset of the pain and lack of medical options left Emily in the ‘deepest, darkest depression’ she could have imagined. During those months she was lucky to have had ongoing support from her worried family. 

The only hope she has left is a treatment that has a 50 per cent chance of reducing some of her pain. 

‘After being told for so long that Covid doesn’t cause this kind of pain, I came across a surgeon that is performing MRI Focused Ultrasounds of the Central Medial Nucleus of the Thalamus. He gave me a chance to find some freedom 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 a chance of taking away 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 close to $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 whole perspective of life has been forever changed

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 perspective on life has been forever changed.

‘Every little thing in life is now so infinitely much more beautiful,’ Emily said. 

‘It gives you this crazy perspective and the smallest things give you joy that I just want to keep fighting. And life is worth fighting for.’

If you or anyone you know is suffering, call Beyond Blue on 1300 224 636

You can find a link to Emily’s GoFundMe campaign in the bullet points