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‘Brain on Fire’ illness left Dundee nurse sectioned with hallucinations, memory loss and fears for her life

Dundee woman Stacey Drummond is on the long road to recovery. Image: Stephen Eighteen / DC Thomson.
Dundee woman Stacey Drummond is on the long road to recovery. Image: Stephen Eighteen / DC Thomson.

When Stacey Drummond’s 2022 began she had no idea what was around the corner.

The Douglas nurse expected to carry on enjoying her job as a carer at ward 10 of Ninewells Hospital.

She also anticipated going out with her friends and spending more time with parents Grant and Maureen, sister Nicola, brother Craig and niece Madison.

She might even have fancied a nice holiday or a few weekends away – certainly nothing out of the ordinary.

But what transpired was extraordinary.

In the space of seven months Stacey was sectioned twice, handcuffed by police during a lengthy stay at a Ninewells high-dependency ward and “put to sleep” on a ventilator.

She suffered psychotic episodes that included hallucinations, seizures and robotically reeling off numbers at great speed while in a trance.

She became obsessed with eating, aggressive to hospital staff and even knocked her own sister to the floor. She needed to be monitored by Ninewells staff.

She thought she was going to die and, in their darkest moments, her family did too.

Perhaps even more extraordinary is that this previously healthy and placid 33-year-old can barely remember any of the above.

She sometimes struggled to recognise her own family and at times needed to be told that Covid was a thing.

Many of Stacey’s symptoms pointed to schizophrenia but she actually had anti-NMDA receptor encephalitis, an autoimmune disease that affects one out of 1.5 million people per year.

It is the same condition that features in the film Brain on Fire – but Stacey was actually in a worse state than Susannah Cahalan, played by Chloë Grace Moretz in the 2016 Netflix production.

Thankfully, she should make a full recovery.

Stacey and her sister Nicola have bravely opened up to The Courier about their “seven months of hell” to raise awareness and spark debate about this horrendous and often overlooked disease.

This is part one of a two-part feature split into the following sections.

  • Nursing, hallucinations and paranoia
  • No memory, episodes, mumbling numbers
  • Hospital and sectioning

Nursing, hallucinations and paranoia

Stacey Drummond attended primary schools in Birkhill and Newtyle, where her parents still live, before completing her education at Monifieth High School.

She has always worked in healthcare, firstly at the former Mundamalla Nursing Home in Newtyle.

Stacey then moved to Dundee and took on a role at Harestane Care Home.

For the past three years she has been at Ninewells caring for patients in the hospital’s surgical ward.

First seizure came from nowhere

It was in early February when she first noticed something was off.

“I was living my life completely normally and I noticed I was getting a bit dizzy,” she said.

“One night I woke up in morning for work and bit my tongue. I had had a seizure but wasn’t aware of it.

“I went to work and didn’t feel right at all. I sat down at 9.30am not feeling well.

“I was taken to A&E for a check over and they found nothing. They thought I may have fainted.

“A few days later I went to work and had a seizure in the middle of the handover from night to day shift.

“All I remember was one of the nurses waking me up. I was dead confused and didn’t know what was going on.

“One of the charge nurses took me down to A&E but I wasn’t allowed in because of Covid restrictions.”

Stacey before she became unwell. Image: Nicola Drummond.

On the way home Stacey struggled to board the bus so phoned for help.

“I was crying because I couldn’t walk,” she recalled.

“The ward clerk came down and had to walk me there and I was bumping into everything.”

‘I couldn’t see his face because it was dark’

The following week, while Stacey was on holiday from work, her condition worsened.

While watching Grey’s Anatomy she perceived that her television and phone had become blurry.

She thought it was a problem with her wifi but it was something much more serious.

After further fainting incidents she became convinced someone was outside her home.

“I couldn’t see his face because it was dark,” she said.

“He had a green jacket on and I thought my buzzer was going.”

She rang Nicola, who advised her to call the police.

When they arrived there was no sign of anyone.

Neither was there any evidence of someone separately posting Reese’s Peanut Butter Cups through her door, despite Stacey’s insistence.

“I called the police and they didn’t believe me,” she said.

“They asked me if I had been taking any drugs because I didn’t seem right.

“I was getting frustrated, I had been hallucinating.

“During that time I couldn’t tell what was real or not.”

‘Like a scene from The Matrix’

The following day the police contacted Stacey’s doctor in Muirhead for a mental health assessment.

While there she began to have a seizure.

“Because it affected my nervous system it felt like an electric shock, starting at my toes,” she recalled.

“I could feel it coming on and that something was going to happen.

“Having a seizure is like The Matrix film where everything looks off and is turning.

“They thought my iron levels were low.”

Nicola helped look after sister Stacey throughout the ordeal. Image: Nicola Drummond.

Stacey was then twice called by mental health staff amid fears she was having a breakdown.

“I knew it wasn’t a breakdown,” she said.

“I had a happy life working at Ninewells and going out with friends.

“I went through a breakup with a fiancé but this was six months earlier and I knew it was nothing to do with it at all.”

Due to the fainting she was signed off. She moved in with Meigle resident Nicola because she was feeling unsafe in Douglas.

“I don’t remember much after that,” Stacey said.

“I have little flashbacks. I would sometimes look like I had Tourette’s. They were known as involuntary body movements.”

No memory, episodes, mumbling numbers

From the end of February, Stacey suffered severe memory loss, which means much of her story is told by her older sister.

Nicola, 35, previously worked at Zara in Dundee until it closed in 2020.

It panned out well for her, though, because she then took a job at the Flour Coffee Shop, which is walkable from her Meigle home.

Nicola was distressed by the change in her sister’s behaviour. Image: Stephen Eighteen / DC Thomson.

For the following seven months she was given great support from her employers David and Wendy Allan as the full horrors of Stacey’s condition unfolded.

Over the next few weeks the seizures increased in frequency and intensity.

She was in and out of Ninewells accident and emergency department six times as medics struggle to pin down the problem.

‘She almost looked a little possessed’

Nicola’s account of her younger sister’s seizures is harrowing.

“She would have episodes that would last around an hour,” she recalled.

“She would say the TV was off but I would look at the TV and see that it was on.

“She would sleep in my room and one time she woke up abruptly during the night, jumbling numbers off.

“I wouldn’t be able to speak or say these numbers so quickly.

“It would be random numbers. I don’t know where she was getting them from.

“It was so fast that it was almost robotic. I didn’t know what was going on.

“Her eyes were glazed over, she almost looked a little possessed. I was freaked out.

“She would do movements so fast with her hands.

“They would go back and forward quickly and point in all directions.

“She would whistle really quickly and do things we couldn’t do.

“It looked like she had Tourette’s.

“She was getting worse. As the days went on she was becoming more psychotic.

“We kept calling the ambulance out of hours.

“The man would come and say her observations were fine, and that there was nothing wrong with her.”

Covered in blood after breathing scare

On one occasion Stacey was particularly distressed.

“She was sat on the couch and letting out the biggest wrenching scream I’d ever heard,” Nicola said.

“Her whole body was stiff. It was like rigor mortis.

“So I phoned the ambulance straight away. I was on the phone and checked her breathing, which wasn’t where it should be, so they told me to get a defibrillator.

“I couldn’t get one so rang my manager at Flour and he came over with one.

“But her breathing came back before it was needed.

“The ambulance people came and she woke back up but had no memory at all. She wondered why everyone was in the room.

“She was fine but was covered in blood because she had been coughing it up.”

3am terror for family

One night Stacey woke up abruptly at 3am.

Stacey and Nicola. Image: Nicola Drummond.

“She got up and gave me a fright,” Nicola said. “I knew from the expression on her face that something wasn’t right.

“She was acting irrationally and saying things that didn’t make sense. She was on the couch twitching.

“I was waiting for it to phase out and to get her back but it didn’t. It stayed.

“I called mum and dad and was crying. I said I needed help because I couldn’t look after her. I was scared.

“Mum and dad came in and were all sitting in the living room together.

“Stacey was no longer Stace. She was a totally different person. She was all day ripping things up.

“We gave her squishy toys to make her hold to calm her down. She was ripping at them erratically and throwing them at my dad.

“We were sitting here in the front room looking at each other and saying that something’s not right.

“She was mumbling off numbers, dates, birthdays and bank codes.

“Whatever was going on in her head at the time was coming out.

“I said someone needed to look at her. This was not right.”

Hospital and sectioning

Nicola’s repeated pleas to the doctor were finally answered when Stacey was referred to Ninewells ward 23, the neurological ward.

She says that staff were “amazing” but they still did not know what was wrong with Stacey.

Her blood tests continued to show nothing untoward so it was assumed she was having a mental breakdown.

One week in, she was sectioned under the mental health act and transferred to the Carseview Centre.

Here she was only allowed visitors for one hour per day and the treatment she received was very different to Ninewells.

She had to speak to a doctor about her whole life, which included going into depth about her relationship breakup six months earlier.

After three weeks, however, there was a breakthrough that enabled Stacey to leave Carseview.

Here is part two of Stacey’s story