“My husband and mother-in-law thought I was going to die as they watched my limbs kick to the roof uncontrollably and my back and neck spasm,” Ella said of the first episode.
A doctor on ward rounds said words to the effect of “when this was sold to me, I thought ‘pregnancy, anxiety, mental health’ but it’s a classic case of [metoclopramide] toxicity”, Ella recalled, insinuating she had overdosed.
Her medical notes stated, “unintentional dopaminergic [anti-emetic] overuse”, but Ella said she had taken less than the prescribed doses.
“There seemed to be an assumption that I had taken an unintentional overdose because I was anxious and depressed. Case closed,” Ella said. “No one bothered to ask or check how much I’d been taking.”
Associate Professor Luke Grzeskowiak, a clinical pharmacist who also leads the Reproductive and Perinatal Pharmacoepidemiology Research Group at Flinders University, said drug-induced movement disorders were well-recognised side effects of metoclopramide and antipsychotics.
“We are talking one in 100 [people who take metoclopramide] could experience dystonic effects, and it can occur at low doses,” Grzeskowiak said.
“The vast majority will get through without experiencing anything, then there will be a small number with debilitating side effects … and we don’t know why.
“Polypharmacy – adding medications on top of each other – can increase someone’s likelihood of having adverse reactions.”
Dr Debra Kennedy, the director of MotherSafe – a free telephone counselling service for women and their healthcare providers concerned about drug or environmental exposures during pregnancy and breastfeeding – said metoclopramide was a “horrible, crappy drug for HG” prescribed as a first-line treatment at disproportionately high rates by Australian prescribers.
“I try to get people off it,” Kennedy said. “It’s not particularly effective, and one of the most common side effects is that it exacerbates depression, which a lot of these women will have associated with the nausea and vomiting.
“The guidelines say you should only prescribe metoclopramide for five days, but no one looks at that … they are happy to prescribe it forever.”
Ella recalled feeling like a medical oddity as the doctor, without speaking directly to her, invited clinicians on ward rounds to “look at this, look at that”, as he pried open her eyelids to reveal only the whites of her eyes.
She was treated for the “toxicity”, diagnosed with depression and prescribed mirtazapine, an antidepressant that also has an antiemetic (nausea and vomiting prevention) effect.
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Back home, Ella started having terrible dreams and what she assumed were panic attacks.
She told her GP she felt like running into traffic and was referred for a voluntary admission to a mental health unit for three days. Quetiapine, an antipsychotic, was added to her medication mix. An admission to a private mental health hospital in Sydney followed.
All the while, Ella’s dystonic movements continued until they became so distressing that she moved to her parents’ home and away from her two small daughters for fear of unintentionally injuring them.
“I kept saying to Mum and Dad that the drugs were doing me harm,” Ella said. “I really wanted to die, but it was mostly because of the way I felt physically.”
For three days, Ella’s involuntary movements were violent, flailing and unremitting. She could not sleep and would scream in overwhelming distress.
Ella tried to grab a knife, but her father and brother forcefully disarmed her.
The Age and The Sydney Morning Herald have launched an investigation into medical misogyny: ingrained, systemic sexism across Australia’s healthcare system, medical research and practise.
More than 1800 women shared their experiences as part of our crowd-sourced investigative series, which prompted a national outpouring of grief and frustration as women described feeling gaslit, dismissed or being told their pain was “all in their heads”.
We call on the federal government to boost Medicare funding for GP appointments that last more than 20 minutes to improve care for women and others with complex health conditions.
The Albanese government and the Coalition have promised to pour $8.5 billion into Medicare to make GP visits more affordable and improve bulk billing rates, but longer 20-minute appointments will receive a smaller proportional funding increase.
Doctors have warned that these policies could further disadvantage women by continuing to incentivise shorter consultations, which don’t give GPs enough time to address menopause, pelvic pain and other women’s health issues.
An hour later, Ella had her second terrifying seizure-like episode and was taken by ambulance to hospital. This time, she was scheduled as an involuntary patient under the Mental Health Act.
“I couldn’t believe what was happening. I was 19 weeks pregnant and all of my rights were just taken away,” Ella said.
Ella’s mother, Jenny Johnson, a former senior nurse manager, said a doctor had medically cleared Ella to be scheduled.
“She didn’t gather any history … no one seemed concerned that she had had a repeat of an acute medical episode,” Johnson said. “Instead, [as a justification for scheduling Ella] they said words to the effect of, ‘It certainly sounds like a dystonic reaction, but it’s such a small dose that it’s highly unlikely’.”
From her hospital bed, Ella found a medical journal article online describing metoclopramide-induced tardive dyskinesia. She recognised her symptoms and sent a screenshot to her mother.
Johnson made a call to REACH, a NSW hospital system allowing patients and families to escalate their concerns. She told the officer that there was something everyone was missing: that Ella’s medications were causing her symptoms. But no staff arrived to assess Ella.
“It was like Ella was put on this runaway train on the mental health track, and no one recognised what was going on,” Johnson said.
“She was dehumanised. The lack of kindness was awful.”
Johnson had witnessed the same during her career, recalling a young woman presenting to the emergency department with what would later be diagnosed as a brain tumour but who was initially dismissed as a melodramatic “princess”.
Ella was terrified in the involuntary psychiatric ward. She worried she would be attacked by the violent male patients and found the staff threatening.
With a contraband pencil and paper that another patient had snuck into the unit, Ella wrote a list to prove to the doctors that she was compliant and could be released.
Two days after she was sectioned, a psychiatrist walked into Ella’s room flanked by six doctors and said, “Did you know you’re missing part of your cerebellum?” referring to part of the brain critical for co-ordinating movement and balance.
Ella knew. She had been diagnosed with a congenital condition that affected her cerebellum when she was 14 months old. It was well-documented in her medical notes and evident on a CT scan performed six weeks earlier, after her first seizure-like episode, to rule out stroke.
“He said that this changed everything, and it was possibly the reason I suffered so badly with hyperemesis and why I reacted so badly to the drugs,” Ella said. “I was predisposed to a high sensitivity for adverse drug reactions.”
Even if the link between Ella’s cerebellar issue and the drugs was a rare finding, the fact that other causes weren’t considered is what is galling to Ella and her family.
Once again, Ella felt she had become an inhuman exhibit to be prodded and examined in front of the crowd of doctors, as she cried uncontrollably.
The same doctor told her the schedule wouldn’t be lifted for another six days.
“I was distraught. I was so desperate to get home to my family,” Ella said.
“Why was he happy to leave me in that hideous environment for another six days? Why did no one else, over all of those weeks, link my deteriorating mental health to the physical side effects of the drugs I was being prescribed and taking?”
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Her mother again called REACH. This time, the REACH co-ordinator listened and took detailed notes. Ella remembers the co-ordinator returning soon after to tell her the schedule had been lifted and Ella would be transferred to the voluntary mental health unit.
When Ella was reviewed by another psychiatrist the next day, he said words to the effect of: “You have all of these red flags with you coming in and out of mental health institutions. If we had let you out and you had done something, we would have all lost our jobs … How do you feel about that? OK, are we clear?”
“This could have ruined my marriage and my ability to be a mother,” Ella said, thankful that her baby, now 11 months, is healthy. “I am going to live with this trauma for the rest of my life.”
The hospital’s directors of emergency medicine, psychiatry and obstetrics apologised to Ella for multiple fronts during a meeting facilitated by the Health Care Complaints Commission in August 2024, including:
Caitlin Kay-Smith hears echoes of her experience in Ella’s case. She came close to being scheduled to a mental health unit when she experienced an adverse reaction to metoclopramide.
“I was lucky that a perinatal psychiatrist whose daughter had HG stepped in, and she said, ‘No, give her an IV’, and she sent me to the maternity ward instead,” Kay-Smith said.
“It’s not rare for women taking these drugs and having these types of reactions to describe the agitation as being really anxious, and clinicians aren’t connecting the dots.”
Kay-Smith said women must be told about these uncommon but serious drug side effects. Dystonia and depression are included in the national HG management guidelines (though not dyskinesia, which has a later onset). But, adherence is patchy, Kay-Smith said.
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Meanwhile, a lack of awareness about current medications has led to women being denied treatment and ongoing research into new, safer treatments has been stymied by the spectre of the thalidomide crisis – a drug to treat morning sickness in the 1950s and early 1960s that led to more than 10,000 babies being born with birth defects. Thalidomide had been poorly tested, raced to market and advertised as safe for pregnant women and their babies.
“Thalidomide is the reason people just aren’t running drug trials on pregnant women,” Kay-Smith said.
Mirtazapine – one of the drugs suspected of exacerbating Ella’s reaction but relieving her HG symptoms – is considered experimental and not a first-line treatment, and Kennedy said there was a fair amount of reassuring safety information about the drug.
The crux of the issue for Grzeskowiak is: “How well-informed are women [with HG] about these treatments, why do we have so many treatments with severe side effects, and why is there a lack of development and promotion of newer, safer, more tolerable medications for what is quite a debilitating illness?”
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