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Domperidone withdrawal... help?

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  • #1

    Domperidone withdrawal... help?

    Hi, fellow posters,
    I am looking for some help. I took domperidone for 15 months in order to breastfeed my son. I started tapering off when I began to have PVC's (heart palpitations) on a regular basis. While I was tapering (I went down about 10 mg/week, starting at 90 mg/day), the symptoms became dramatically worse: terrible bouts of anxiety (racing heart, flooded with adrenalin, salivation, etc.), diarrhea, profound exhaustion, inability to regulate my temperature (chills), increased heartburn (I have GERD), vertigo, insomnia, and more PVCs and even some chest pain. They finally abated, except for some minor vertigo, about 2 weeks after I finished the last dose, and I thought I was done with that terrible nightmare. Then, about 5 weeks ago, even though I haven't touched the medication in months and had 3 months with no symptoms, it all came back with a vengeance. It started with more PVCs, then moved into profound exhaustion, then chronic, overwhelming nausea, and now terrible panic attacks every morning. I don't know what to do... no doctor seems able to help me (and they are all unwilling to believe that I could be having these symptoms this far out from discontinuing the medication). I've seen other accounts here on Infant Risk of a similar response, although in most cases it resulted from going cold turkey. I tapered very, very gradually, so I'm not sure why I would have such an extreme response? I am looking for advice from anyone who has been through this and/or can help. Thank you.
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  • #2
    I know this is years later. But I have beeens watching forever for any info on domperidome. I was put on this for cancer. I was on for 4 years and weaned down. I started with heart palpitations, anxiety, sweats, depression and very low blood pressure and pulse and chest pains. I went to a cardiologist and he doesn’t think it is concerning. I’m freaking out because the heart palps go all day and night . It’s been a month and things have not gotten any better. Curious did you get any resolve from this nightmare drug and how long did it take? Thanks Michelle

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    • #3
      Hello Shelc33,

      Unfortunately, your experience with domperidone isn’t a new story for us here at the InfantRisk Center (particularly lately). We published a paper talking about three women's experiences last year, I'll put the link below or call the InfantRisk Center. Some other comments that you might find helpful are below:

      Majdinasab E, Haque S, Stark A, Krutsch K, Hale TW. Psychiatric Manifestations of Withdrawal Following Domperidone Used as a Galactagogue. Breastfeed Med. 2022;17(12):1018-1024. doi:10.1089/bfm.2022.0190​
      [url]https://www.liebertpub.com/doi/10.1089/bfm.2022.0190?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20 %200pubmed[/url]

      1. There is at least one support group on Facebook with women withdrawing (or have withdrawn) from domperidone. I’ve heard from many women that being able to interact with others in a similar situations helps them with the anxiety: Side Effects of Domperidone used for Breastfeeding: Info & Support ([url]https://www.facebook.com/groups/679440590051426/[/url])

      2. There is a site collecting stories of women with domperidone withdrawal ([url]https://sites.google.com/view/domperidone-syndrome/home[/url]) . You can read the stories and submit your own

      3. Health Canada has started an investigation into the phenomenon. If that is where you sourced the domperidone, I suggest submitting an ADE report ([url]http://www.health.gc.ca/medeffect[/url]) to them.

      4. For an understanding of weaning from domperidone, I suggest reading about hyperbolic tapers in the following article. It is for antipsychotics, but as a D2 antagonist domperidone withdrawal should be the same. Horowitz MA, Jauhar S, Natesan S, et al. A method for tapering antipsychotic treatment that may minimize the risk of relapse. Schizophr Bull 2021;47(4):1116–1129.

      5. If you would like to be included in our research database, you can submit this form ([url]https://infantrisk.com/help-infantrisk-research[/url]) or call the InfantRisk Center nurse line (they won’t have any additional information but can tell you what they hear from other people)

      It takes time, but I do hear it gets better.

      All the best,
      Dr. Krutsch

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