Domperidone ‘crippled me’: Canadians reflect on withdrawal symptoms after use

After giving birth to her son on April 18, 2021, 38-year-old Jennifer Ferger in Victoria, B.C., had difficulty producing breast milk.

“We were concerned about my supply,” she told Global News in an interview this week.

After consulting with her midwife, she was given a number of choices, including herbal remedies and lactation cookies, to help increase production.

Finally, she settled on starting a prescription drug called domperidone recommended by her midwife.

“I wanted to give it the best shot I could, to provide breast milk,” she said.

While domperidone has been officially approved by Health Canada for treating gastrointestinal disorders since 1985, it is also sometimes prescribed postpartum to help increase the supply of breast milk.

How does it work?

Domperidone “antagonizes” dopamine, which allows for prolactin — the body’s milk-making hormone — to rise and increase milk production, said Jessica Bawden, a nurse practitioner at the Women’s College Hospital and an international board-certified lactation consultant, in an interview with Global News earlier this week.

However, as noted by Health Canada, domperidone is not authorized for use in the country for the purpose of increasing lactation. A side-effect of domperidone is increased breast-milk production, Bawden said.

Although off-label drug use — where a drug is prescribed for something that it wasn’t intended for or approved for — is a very common practice, using domperidone to stimulate lactation should be the last resort, Bawden added.

People who breastfeed should only take domperidone when they have “exhausted all of the first line ways of increasing milk supply” that are known, she said.

Kim Smith, international board-certified lactation consultant, who’s been in the field for 12 years, told Global News that domperidone is “fairly common” in her practice.

“But we still don’t universally know who’s going to benefit and who’s not,” Smith said.

“So, it’s often a just give it a try. And if it works for you, great. And if it doesn’t, then you know, then it doesn’t. And so, I have seen very mixed results.”

'Safe and normal'

For Ferger, she was assured by her midwife that the drug was commonly used and that she had prescribed it “many times before.”

“I was told it was completely safe and normal,” she said.

Though a maximum dose of 30 mg of domperidone per day is recommended by Health Canada — for gastrointestinal issues — Ferger’s dose was tripled, as her midwife prescribed her 90 mg per day.

Her breast milk supply tripled during the three months that she was on the drug but “it was a very difficult time,” she recalled.

By month three, Ferger started to have digestion issues and her mental health started to suffer as well. She decided it was time to switch to formula feeding and get off the drug.

“I didn’t feel good, I didn’t feel good, mentally. It just made things worse and made me feel gross. I was not doing well,” she said.

When Ferger finally made the choice to take herself off the drug, her symptoms got worse.

“It was awful, and I was already in a fragile state,” she said of the side effects she began to experience after she stopped using domperidone.

“The withdrawal was the worst part,” Ferger said.

At first, it started with insomnia. Then, came constant “blushing” in her stomach.

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“That feeling when you go on stage or are public speaking and you get that drop in your stomach — that blushing of your stomach,” Ferger explained.

“It wasn’t just a wave. It was constant butterflies in my stomach.”

And then, the intrusive thoughts came.

“I remember saying to my husband: ‘I’m having bad thoughts. I don’t want to be here anymore,'” Ferger said.

“I want to crawl into a cave and die,” she told him.

Eventually, Ferger was able to properly wean off the drug with help from her midwife.

Thirty-six-year-old Jessica C., an employment specialist based in Ontario, told Global News that the side effects of domperidone “robbed” her of the joys of being a mother.

She was prescribed the drug five months post-partum and was told not to look it up online it by her health care provider.

“Within a couple days (of the medication) I started to have feelings of intense rage that actually scared me. And I would get really angry out of nowhere. And that’s not me at all,” she said.

Now, Jessica, who is still on domperidone, “regrets” taking the drug.

“I think it’s robbing me of the joy of being a mother,” she said. “I should be able to be happy and enjoy my time… (but) I’m stressing constantly about my own mental health.”

What are the concerns?

Recently, Health Canada called for the safety review of using domperidone off-label for increasing breast milk supply in postpartum people, based on “domestic and foreign case reports of withdrawal symptoms after stopping or reducing the dose of domperidone used to stimulate lactation.”

Across the border in the United States, the Food and Drug Administration (FDA) has banned domperidone altogether — even for its intended use to treat gastrointestinal symptoms — over cardiac risk concerns.

On its website, Health Canada also warns about domperidone’s association with potential cardiac risks, including sudden cardiac death. The agency already has two separate safety alerts both on domperidone and the risk of “serious abnormal heart rhythms and sudden death (cardiac arrest)” issued in 2012 and 2015.

But experts are worried that such safety warnings would cause people to panic and immediately stop using it — and that may not be the solution.

Alixandra Bacon, president of the Canadian Association of Midwives, said people should consult with their health-care provider and emphasized the importance of tapering off this medication if they have any concerns.

“I’m afraid that these news reports might have the unanticipated impact of increasing side effects if people panic and stop (using),” Bacon said.

Bacon also pointed out the lack of support birthing people have during and after pregnancy in Canada, brought to light by the issues around domperidone.

“In Canada, unfortunately, we have a lack of lactation support, and we have a lack of perinatal mental health support,” she said. “That’s why it’s critical that every birthing person has access to a midwife and or a lactation consultant.”

Smith agreed.

“You need more breastfeeding support in general,” she said.

“I think you really should reach out for support because there are so many things that we could examine and look at to try and make things better.”

What is the policy across provinces?

In B.C., prescribing domperidone is within a nurse practitioner or midwife’s scope of practice. It is not within a registered nurse’s scope to prescribe domperidone, the BC College of Nurses and Midwives said in a statement to Global News.

“Prescribers must meet their standards, which includes being responsible and accountable to their prescribing decisions and using current evidence to support their decision making,” the statement said.

Marie Tarrant, professor at the University of British Columbia’s school of nursing, told Global News it’s “not uncommon” for domperidone to be prescribed to individuals postpartum who are having difficulties breastfeeding.

“I think it’s more common probably than we think because it is an off-label prescription,” she said, noting the drug is often prescribed in circumstances where a baby is born preterm.

“I think we really need to do a proper safety review and a proper evaluation of the benefits and risks so that people can make informed decisions,” Tarrant said.

In Ontario, too, midwives have the authority to prescribe and administer domperidone “for the purpose of promoting lactation,” said Kelly Dobbin, CEO and registrar of the College of Midwives of Ontario, in an interview with Global News.

In Saskatchewan, while midwives are not authorized to prescribe the drug to increase breast milk supply, they are allowed to give it to patients as an antiemetic — to help prevent vomiting, according to Cheryl Deschene, executive director and registrar at the Saskatchewan College of Midwives.

In Quebec, Julie Pelletier, president of Ordre des Sages-Femmes du Quebec, told Global News that midwives do prescribe domperidone to people who have “significant breastfeeding challenges.”

“It’s not rare, but it’s not uncommon either,” she said, noting patients are provided with the proper information about the drug.

“We continue to inform the client and give them the whole picture and continue to support women’s choices,” Pelletier said.

“Breastfeeding is important, mental health is important, but they don’t have to be mutually exclusive.”

— with files from the Canadian Press