‘This is not life’: Medical mystery leaves Emily Morton in constant pain and feeling hopeless

A consuming pain condition has left a young married woman confined to her parents’ home, after she was forced to give hers up when her condition got too much to bear.

Emily Morton with her husband Andrew Morton. Picture Dean Martin

From the moment Emily Morton wakes up to the moment she falls asleep she is in debilitating pain.

Her condition has been a medical mystery since it materialised in February 2022 after she contracted Covid-19.

“I’ve lost my whole identity, it makes me feel absolutely hopeless, in despair, absolute despair,” the 28-year-old said.

“I’m terrified to wake up.”

Her nightmare began with a toothache. The newlywed took a trip to the dentist who couldn’t find anything to suggest she had a toothache. Then, over the following weeks, each tooth began to hurt.

Emily contracted Covid-19 again and began to experience debilitating electric-like shocks to both sides of her face.

“I was absolutely terrified,” she said.

“There were no answers, no diagnosis, no treatment, no treatment beyond the medications they give for epilepsy.

“I started to lose parts of my life gradually.”

Emily started to lose parts of her life gradually. Picture: Supplied

Emily, who was working as a marketing co-ordinator and wedding videographer, was forced to quit her job after she would constantly collapse to the floor in pain.

Her husband, Andrew Morton, also left his job to become her full-time carer.

She and her husband lost their home and moved into Emily’s parents’ Fairview Park home.

“The only thing I haven’t lost is my beautiful friends, family and husband,” she said.

The pain Emily experiences comes in two parts – the first is constant pain in her teeth and the second is periodically in her face.

“Imagine feeling like all your teeth have been crushed all day long and then you don’t know when another lighting bolt is going to hit you in the face and knock you to the floor,” she said.

“All the nerves in my cheeks are twitching and zapping, just like fireworks going off in your face, it’s horrible.”

Emily had to stop work, she lost her house and had to move in with her parents with her husband, who also had to stop working. Picture: Supplied

While doctors have not been able to formally diagnose Emily and provide her with a treatment plan that provides her with relief, her symptoms align mostly with a chronic pain condition called trigeminal neuralgia.

“But usually that condition presents only on one side of the face and it’s not usually constant pain, it just comes and goes,” she said.

“They (doctors) are reluctant to give me a strict diagnosis because I’m clinically presenting with features that are atypical.

“When you don’t have a diagnosis they can’t give you a treatment plan, they kind of take shots in the dark.”

Unfortunately medications for classic trigeminal neuralgia have not been successful for Emily so far.

Emily on her wedding day. Picture: Supplied

Emily in hospital. Picture: Supplied

Emily, who has travelled around Australia and Europe for answers, said her condition is nicknamed the “suicide disease”.

“And that’s when it’s typical,” she said. “So being atypical, it’s kind of like double, double the hell.

“It’s life threatening in its own way. It may not be a terminal illness, but it’s what I would call life threatening because it just drives you to that point mentally.”

Emily said she and her husband are “tired and “beyond exhausted”.

“We’re not living anymore, we are just surviving,” she said.

“This is not life.”

The 28-year-old spends her morning “waking up screaming”, her husband makes her an anti-inflammatory high-protein breakfast, before she either spends her time at home or at appointments.

“I can’t leave the house anymore, other than to go to appointments, because I can’t talk to anyone, which is inhumane,” she said.

“I don’t want to have an attack in public and be screaming and scaring people.”

There may be hope for Emily, a surgery which gives her a 50 per cent chance at relief. Picture: Supplied

But there may be hope for Emily. A cutting-edge surgery can give her a 50 per cent chance of pain relief.

“It’s a brain surgery but it’s incisionless which means they don’t actually do a craniotomy,” she said.

Using focused ultrasound, targeted sound waves produce precise ablation which could treat Emily’s condition.

“It’s given me a 50/50 chance of finding a bit of relief from the intensity of the pain,” Emily said.

The cost of the surgery is $40,000 according to Emily and is not covered by Medicare.

If you want to donate to Emily, you can here.

Originally published as ‘This is not life’: Medical mystery leaves Emily Morton in constant pain and feeling hopeless