A Call for changes in prescribing practices of domperidone for lactation

This is website to advocate for further research and better labelling of the medication 'domperidone' when used as a lactation aid. In rare but serious cases this medication can cause extreme physical and psychological problems up to and including suicidal ideation. You can read personal accounts of withdrawal symptoms here.

Patients are not being properly informed of the potential risks or how to minimize and prevent them.

This is a call for people who have experienced negative side effects from taking or withdrawing from domperidone as a lactation aid to share your experience. It is also a call to action for the medical community engaged in the use of domperidone for lactation, the medical research community, and Health Canada to take further action to protect maternal health.

The call to action

We are concerned about potential rare adverse side effects resulting from the use and cessation of domperidone as a lactation aid. Specifically, we are concerned that patients are not being informed adequately about the risks associated with this medication.

We have noted that some people will experience extremely severe side effects from the cessation of domperidone; including psychosis, anxiety, tachycardia, insomnia, panic and anxiety attacks, and intrusive thoughts (up to and including suicidal and homicidal ideation). We are extremely concerned that these side effects, however rare, are impacting people who are caring for infants.

We call on Health Canada and the medical community to respond to the grave risks presented by current domperidone prescribing practices, specifically ask that:

  1. Nursing people taking domperidone be advised of the potential for serious psychological disturbance resulting from withdrawal from domperidone, appropriate tapering schedules, and the warning signs that they are experiencing adverse side effects.

  2. Prescribing physicians adequately advise patients that this is an off label usage of the medication.

  3. A warning label should be affixed to this prescription advising of the potential for suicidal & homicidal ideation.

  4. Further research must be conducted on the side effects of domperidone in long term usage and the potential adverse effects of withdrawal.

  5. That Health Canada and the medical and research communities further research regarding the use of domperidone as a lactation support.

Sign the Open Letter here: Call to Action

Why I created this website

If you spoke to me in September 2021, you would have found me calm, collected, and enjoying the freedom of maternity leave and the profound joy of spending time with my beautiful child. At the end of September I decided to start my child on solid foods, and with that to reduce breastfeeding- which had never come naturally to me. Happily, this would also mean stopping the medication (domperidone) I had been taking for the past 7 months to promote lactation; goodbye heartburn and headaches! I had never enjoyed domperidone, but I had been willing to do anything to breastfeed.

Eight weeks later, after two months of mounting anxiety and emotional distress you would find me completely exhausted, sobbing on my kitchen floor fighting intrusive thoughts of self-harm and suicide… What happened?

There are many causes of postpartum mental health crises, many of them difficult to prevent, but in my case my rapid psychological decline could have been easily prevented. I suffered from ‘domperidone syndrome’ acute psychological disturbances resulting from the rapid cessation of domperidone. A syndrome which can be easily prevented by withdrawing slowly from the medication. There is little research on the effects of using domperidone for lactation (a medication intended for gastric problems that incidentally promotes lactation), or the consequences of withdrawing. There is little research because the medication is not approved by Health Canada for that use. (You can learn more about off label prescriptions, and the associated risks, here). This information was not shared with me by the doctor, lactation consultant, or pharmacist.

When my therapist diagnosed this problem, I had never heard of it. I went online, and quickly connected with other people with the same experience. I realized that I am not alone in experiencing these extreme adverse effects.

I don't want anyone else to go through this, so I started this website.

For People who have experienced NEGATIVE SIDE EFFECTS....

If you have experienced negative side effects associated with the use or cessation of domperidone as a lactation aid you are not alone and your voice matters. What can you do?

  1. Share your experience it can make a difference.

  2. Get help. Speak to your health care provider about domperidone syndrome, share the research links and case studies (resources).

  3. Report your experience directly to Health Canada, and/or speak to your pharmacist about reporting your side effects.

  4. Sign the Open Letter

  5. Share your experience in a letter or email to the health care team you worked with (your midwife, doctors, lactation consultants, pharmacist, etc); you can include a link to this page if you would like.

Please note: This website has been created as a voluntary effort to raise awareness of the potential harmful effects of domperidone and the need for further research. This is an effort I began following my own experience. There is not institutional support for this effort. If you require support or further information, please contact a medical professional. You may also find support through facebook communities such as "support for mothers on domperidone".

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For Medical professionals

As health care providers you play a key role in addressing this issue. You can support safer medical care for lactating people by:

  1. Sharing your experience as a lactation support and/or health care professional if you have had clients/patients with negative side effects from taking or withdrawing from domperidone for lactation, by filling out this form.

  2. Reviewing current research on domperidone syndrome (included in the Research section.

  3. Reporting, and assisting your patients to report, adverse experiences to Health Canada.

  4. Signing the Open Letter

  5. Providing the following information to patients if/when you are prescribing domperidone:

"Using domperidone to support lactation is an 'off label' use. Which means it is not approved directly for this use, however, it has shown efficacy in increasing breast milk production. You should be aware that research on it's usage for this purpose is limited and, aside from known cardiac side effects, in rare cases people experience anxiety and other psychological issues (including severe issues such as suicidal thoughts) with this medication. One way to minimize this risk is to wean off of the medication slowly. When you decide to stop taking the medication please speak with me about an appropriate schedule for cessation and what to watch for."

For Supportive Allies

If you are concerned about this issue, you can help by:

  1. Circulating this information in your networks.

  2. Signing the open letter