Our stories

J's story:

In March of 2021, I gave birth to my beautiful daughter Emma. I, like all mothers, desperately wanted to do the best for my daughter. When I found my supply of breast milk was low/inadequate to my daughters needs I sought professional help. I was referred to the Goldfarb Breastfeeding Clinic at the Jewish General Hospital. There I was prescribed a lactation aid, domperidone.

The prescription was written by a doctor but my primary consultation was with a lactation consultant who advised me that I ‘should take the medication as long as [I] wanted to breastfeed’. I was advised that domperidone can cause heart problems, and was given appropriate recommendations for follow up on that issue. I reviewed the literature provided by the pharmacy.

In early October I decided to reduce breastfeeding as we had introduced solid food to our infant. I stopped taking my domperidone dosage as regularly and was sporadic with it (sometimes taking the full dosage, other times taking one or two times a day) before deciding to stop completely at the end of October. During this time I experienced severe episodes of anxiety. On Oct. 14th I had an appointment with my family physician at which I mentioned my increasing difficulty with anxiety and I was told to find a private therapist for support.

From October to November I experienced increasingly extreme emotional disturbance (anxiety, panic attacks, intrusive thinking) with accompanying physical symptoms (heart palpitations, sweating, chest pain, and insomnia). I also experienced cognitive issues including mental fog and disorientation. These problems escalated to include psychotic suicidal thoughts (without accompanying emotional distress) and intrusive thoughts of self harm. I became unable to care for my daughter and her father took time off of work and my mother travelled from out of province to assist us.. I believed I was experiencing postpartum depression or psychosis.

I was able to speak with a therapist who reviewed my symptoms and medical history and suggested that what I was experiencing was a result of my rapid withdrawal from the medication. I contacted the prescribing physician and was advised that these symptoms were ‘very rare’ . The doctor suggested returning to a low dosage of the medication. I did this and experienced 80% relief of my symptoms- and specifically complete relief of the most extreme symptoms- within 2 days. I met with my family practice doctor the following week and further increased the dosage slightly, and I experienced further symptom relief.

At this time I am still experiencing emotional disturbance, disorientation, and insomnia. Due to this situation we have been forced to seek alternative child care for our 9 month old daughter, despite my maternity leave. Aside from the extreme distress this situation has caused for me and my family, we are also facing financial burdens related to the necessity for child care and private therapy (I was advised the wait list for public services is 1 year plus).

When I was prescribed domperidone, I reviewed the information provided to me by the pharmacy and no additional information was provided by the breastfeeding clinic. I have now had the occasion to conduct further research. I have learned that domperidone is not approved in Canada for breastfeeding and that this is an off label usage; the subtlety of this was not explained to me when it was prescribed. I have also learned that little research has been conducted on the long term usage of this medication or the side effects of cessation. Although each doctor who has consulted on my situation has advised me that such side effects are rare, I feel these side effects are extremely significant and require more attention- especially given that the target population are caring for infants. In fact there are several case studies similar to mine and a paucity of research on the subject in general.

As I continue to address this issue, I know that I am not alone. I wouldn’t wish this experience on any new parent and I hope that by sharing this I can save someone else this pain.

A's story

After going through a lot of effort to become pregnant, and successfully doing IVF, I was completely blindsided by my difficulties in feeding despite it being common in infertility patients. I had a physically traumatic delivery, which included a long induction, chorioamnionitis, a torn incision, infection and cellulitis. As a result my body concentrated all its efforts on survival, and not so much on making breastmilk. My body just didn’t work, not in the normal ways I needed it to.

To make matters worse my baby’s mouth was born in a way that wouldn’t allow for a good latch. I had planned to breastfeed and hired a private lactation consultant and that experience was sadly disappointing. She didn’t notice issues with baby’s mouth, told me to keep latching him more and more and as a result my nipples became badly damaged. I ended up at a lactation Dr’s office, in tears, with painful vasospasms, an infection in my breasts and a bruise on one nipple from my attempts at pumping the already traumatized tissue.

The Dr was a milk production wizard, and with the help of high doses of domperidone (higher than is used on-label for gastric issues) and some nipple shields, I was finally able to make a meaningful amount of milk. It wasn’t tons, a typical pumping session would yield about 30mL of milk after about 45 minutes for example — but after the indoctrination into the cult of the boob, I was determined to make it work. I was taught that ‘breast is best’ after seeing all the hospital and clinic advertisements. I wanted to try my best so I diligently did the “triple feed” (boob, then formula + pump to stimulate) for months on end.

With that, at my maximum I was able to feed my baby 40% breastmilk. I know this because I spent an enormous amount of my very limited energy filling out endless tracking forms for the Dr to track whether the domperidone was working.

It indeed did work, to the point that if I would skip a dose or try to discontinue my baby would be hysterical because the milk would immediately start drying up. Each time the Dr tried to take me off the medication my milk supply would become intolerable, my kid would be inconsolably furious and I would be forced to start domperidone again. Each time it was a miserable experience and I would come away from it feeling emotionally drained and worthless.

Eventually, I would find I was experiencing some very strange chest pain symptoms that were feeling a bit spooky to me. I had disliked the side effects from domperidone up to that point, but I liked being able to feed my baby so I had put up with them. I had experienced cardiac symptoms before and I recognized this chest pain as being potentially cardiac, so with my Drs supervision I started weaning off.

Predictably, my supply lessened, and I did a very slow taper to try to make it a smoother experience. As my supply diminished during the taper, baby became less and less interesting in nursing. It became obvious that once it was requiring much too much convincing to get baby to nurse, we wouldn’t be able to continue. Our bittersweet final feed was Christmas Eve when baby was 8 months old, and I hoped that Christmas would bring a welcome distraction.

I was blindsided by the intense grief I was feeling at stopping how and when we did. I had worked so SO hard to get nursing to a good place, and it felt entirely out of my hands when we had to conclude. We’d habituated to really nice nursing moments, and nursing became a sure way to soothe baby — I was honestly not sure how I was going to soothe after weaning. There was a lot more crying after that, from both of us.

A strange thing happened after I stopped domperidone whereby I was unable to sleep. I would lie in bed and try all my usual tricks, hot baths, meditations, etc… I would approach the cusp of sleep where the brain normally switches over to sleep mode — but then it wouldn’t happen. For some twisted reason it COULDN’T happen and it was an absolutely terrifying not to be able to rest properly. My body wouldn’t manifest more than two hours per night, and as this carried on I progressively started drifted farther and farther away from my usually fact-minded cognitive state.

Weeks into the sleep deprivation I was in a very dark and wholly devastated place, my brain was completely depleted. I was wildly in love with my baby, but also feeling like his existence was somehow a threat to mine because he was also contributing to my unrelenting wakefulness. One day I was out walking and I felt a strong impulse to push the stroller into traffic in order to save my life. This shocked me, but I noted it was just an impulse and people have all kinds of strange impulses all the time. I didn’t act on it, luckily.

Then, a bit later on that walk I looked at my sweet adorable giggling infant and he looked to me like he was absolutely MONSTROUS. Just, evil, terrifying, with scary snarling features and darkness radiating from his pores. He looked like a tiny ogre baby in my stroller, waiting to eat me alive.

This is the point where I realized that I had detached from reality, because I knew rationally from all the comments strangers made that I had mysteriously given birth to one of the cutest babies that ever existed.

I called a friend, told her what happened and she left her own baby at home with her partner to come to me as fast as she could. She is honestly one of the best women I’ve ever met.

Fortunately for me, I’d been in the care of a neurologist on and off so I was able to get his help within weeks. It was a harrowing time, but he explained that what likely happened is that my levels of prolactin were elevated during my time using domperidone, which is why it helped produce milk — and that I was likely experiencing some kind of rebound crash in prolactin levels. Or, as another Dr described it around then “your prolactin levels are so low, they’re probably in your socks.”

The neurologist forecasted that it would take a few months but that my body would eventually start producing prolactin gradually again. It was an impossibly difficult wait, through the fog of sleeplessness, existing like a zombie and waiting for life to return to some semblance of clarity. My body ached from lack of rest. People came to help, medicines for sleep were tried, failed, then tried again. Eventually I found a medication routine that allowed about four hours fo sleep and on that I could indeed survive. I was just surviving though… living, properly living, that didn’t happen again until much later.

Years have now passed and I still can scarcely talk about it now without experiencing nauseating flutters of trauma. Many of the smaller or more traumatic memories were likely erased, due to the way absence of sleep scrambles your memory. The feelings though, still haunt me. I sleep now, maybe six mediocre hours per night when it goes smoothly, seven if I’m lucky enough for my body to cooperate. Every night I still hope and plead with the universe to let me rest, lest I be sent back temporarily to a blurry existence after a couple of bad nights. I have never slept again as well as I did before my domperidone experience.

If I had a time machine I would go back and tell myself to try a little less hard, skip the medication and enjoy my baby more. I would tell myself that the science is not solid, neither on domperidone nor the outcomes of children who are fed human milk vs. formula. It’s impossible to tell which adults were formula fed, and I’m unconvinced that throwing my body this way under the proverbial bus had any wisdom in it whatsoever.

I bought into the myth, the mystique, the cultish worship of human milk production to the point that I jeopardized my health and my family’s health in the process. Lactivists would tell you I was a good mother, but looking back that is not what I was. I was under a dangerous spell. I believed that doing my best meant following the Drs advice, to take abnormally large doses of a drug that comes with a black box warning… to take a drug that isn’t even permitted for use just South of the border in the States.

Since then I have often wondered how many other people have experienced what I have, and it seems it’s a surprising amount. When I tell my story someone almost always says “oh that happened to my sister/friend/cousin/etc.” It seems to be not at all an isolated experience, and that frankly also terrifies me. I wouldn’t wish what happened to me on anyone else, ever.

I feel it’s time for Drs to do some more digging, and gather a lot more data, and be a lot more empiric about the use of domperidone. There was exactly zero follow up or support from the prescribing clinic about my own experience. It was also never disclosed that this was something that could happen to me. And yet, it did, and to many others too. Why is this going unaddressed?

I was of course much too sick to advocate for myself, or to push for help, and lactivist Drs frankly didn’t care for my sad tale. My story doesn’t fit the narrative they are prescribing, since their bias in advocating for human milk is so strong that they aren’t open to the possibility that for some people their advice may in fact turn out to be harmful. They are so busy trying to help the baby eat the ideal food, that they forget the mother is potential roadkill on the ‘breastfeeding journey’.

This may also be why more people haven’t spoken up too loudly about it, because people who don’t sleep have neither the energy nor the clarity to advocate. They are just trying to survive. Some do, sadly some perhaps don’t.

“First, do no harm” is a guiding principle in medicine. I can confidently say that this experience with domperidone harmed me and my family and put us at risk. Since it has also done so to many others, I would urge any caregivers involved with maternal health to take a good long hard look at domperidone. When does it have a place? What dose is too high? How long should a patient be on it and what is the standard of care during a discontinuation event? I have never seen these questions answered in any of the literature I’ve read.

There may be a time and place for this medication, but expert care should be taken in its use. Otherwise, there will continue to be unintended harm. Babies need healthy parents, as much and if not more than they need the ‘perfect’ food. Please help babies by helping parents make sound decisions around lactation medication.

R's story:

I commenced Domperidone 30mg daily on prescription from my OB in November 2019. My son was jaundiced and didn’t latch properly, and my milk supply regulated at an insufficient level. I continued on 30mgs domperidone until September 2020,, whereupon I began to taper as I started to wean my baby., Wantibg a smooth reduction in milk supply, I dropped 10mgs per week.

I reached a 10mg per day dose in October and experienced intense headaches. painful neck and back spasms, eye and facial twitching, anxiety and panic attacks, trembling, akathisia. dry eyes and mouth, insomnia, and nausea. I also had strange ‘brain zaps’ and vertigo.

Not associating my Domperidone taper with my symptoms, I was admitted to hospital and given CT and MRI scans and blood tests, all of which were clear. Eventually after several symptomatic days, I diagnosed myself using Dr Google. My doctors were very surprised that I was experiencing withdrawal. A neurologist I saw in hospital told me to go back on my full dose and taper slowly. He suggested tapering by 5 mg every 2 weeks. When I was discharged, I followed this protocol until I reached 7.5mg per day, and went into bad withdrawal again.

I stayed on 15 mg per day for 4 months

to stabilise. During that time I had another major episode of withdrawal, which lasted 6 weeks. I went to the ER twice, and was given strong opioid pain medications. I was also prescribed valium for anxiety and ondansetron for nausea. I took these very sparingly, and they made little difference to my symptoms.

I then found the patient support forum surviving amtidepressants.org, and saw that advice for psychotropic drugs was to taper much more slowly that I had been. I figured that Domperidone was a D2 antagonist and therefore somewhat like an antipsychotic - so I followed this advice. I also found the article on tapering antipsychotics by Horowitz and colleagues that recommends tapering using a hyperbolic approach, or 10% of the previous dose, each month. (https://academic.oup.com/schizophreniabulletin/article/47/4/1116/6178746).

Since then I have adopted a very slow taper. I use a pill splitter and microgram scale and create my own capsules from the 10mg tablets - at the moment I am down to 5.5 mg per day across 3 evenly spaced doses.

I still have ‘waves’ of withdrawal, along with ‘windows’ of feeling fine. These are manageable. My next taper down will take me to 5mg per day. I am going to try this in about a fortnight. I hope to get off Domperidone in approximately another 5 months.

If I had known all this would happen to me, I never would have taken Domperidone for lactation. My OB did not mention any side effects or potential withdrawal, although my general practitioner talked to me about potential cardiac effects of taking dom when refilling my prescription.

K's story:

When I was six weeks postpartum my baby went on a nursing strike. I contacted an OHIP covered lactation consultant (referred through my OB) who met with me for five-ten minutes and put me on Domperidone. There was no informed consent. I was not aware that it could impact my dopamine levels or severely affect my mental and physical health. I also was not aware that lactating was a side effect of the med, that it is illegal in the USA, and that it is a med used for something other than for postpartum women. She placed me on 120mg right away without trying any other methods to increase my supply. I was fine after the birth of my daughter and never even had the baby blues. I felt perfectly fine while taking the Domperidone and my supply increased. I was combo feeding my baby. When she turned about five months I decided to start weaning.

The lactation consultant never provided me with any direction so I googled what to do. I reduced one pill per week. I was fine until I reached five pills. All of a sudden my entire nervous system was on fire. I was anxious, having panic attacks, and unable to be alone. I had full body restlessness, severe agitation, and skin crawling sensations. I called my lactation consultant and her supervising doctor who told me there was no way it could be from the meds. She told me I likely had a magnesium deficiency and to go talk to someone at a health food store. I had my bloodwork done and all of my vitamin and mineral levels were fine, as was my thyroid. I decided spontaneously to increase my domperidone to 7 pills. My symptoms decreased somewhat. I knew right away this was a withdrawal issue. I increased to 8 pills and my symptoms lessened a bit more. I was still suffering with skin crawling, panicked states, heart racing, and agitation. I couldn’t care for my baby by myself. My parents had to move in with me and my partner. I emailed the lactation consultant and a different supervising doctor admitted it was likely withdrawal syndrome but stated it was out of her scope of practice to help me. I was on my own. I met with a psychiatrist who I found myself and he put me on clonazepam to reduce my symptoms - it helped a lot and made them manageable but I still suffered for weeks. He was shocked how much medication I had been taking. I started having emotional “episodes” that lasted approximately 30 minutes and then disappeared. During those episodes I was either irritable/agitated/rageful, or depressed/sad/suicidal. I was put on a mood stabilizer (Seroquel) which helped a bit but didn’t completely eliminate the episodes. I had my hormone levels checked and my estrogen and progesterone are extremely low. I am still slowly weaning off domperidone and it has been months. I am still struggling. I don’t know what will happen at the end of this. I feel scared and alone. I feel like nobody can give me answers. I am full of regrets for trusting that lactation consultant and wish I had formula fed completely. This is by far the worst thing to ever happen to me and nobody is held accountable. That lactation consultant washed her hands clean of me. My family doctor said he doesn’t know anything about the medication and has been no help to me. I hope no woman ever has to go through this. It has negatively impacted my relationship, despite my partner being very supportive. It has also made me lose time with my baby that I will never get back.

G's Story

About 4 weeks after having a baby, despite pumping, a stab at a supplemental feeding tube, lactation consultant, fenugreek, almost constant skin-to-skin contact, I still had almost zero milk supply (like 15mL/day).

I had no cardiac issues or previous mood/mental health issues - my only source of stress was not being able to chestfeed and I really wanted to - so my family doctor prescribed Domperidone, 3 times a day.

She advised me to take it at the same time every day, and to taper off slowly when I stopped taking it. She didn't explicitly say WHY I needed to taper off slowly - and because I was obsessed with supply, I thought not tapering off would affect my supply.

When I filled the prescription, my pharmacist handed me the usual printout about medication side effects. I scanned it, it did mention anxiety along with some possible gastrointestinal and cardiac issues, and I just thought "give me my breastfeeding miracle drug." I sort of assumed the side effects would not happen to me, and not having experienced it before, I never thought of anxiety as being serious. I was most worried about potential cardiac issues as I knew that was why Domperidone was unavailable in the US.

Well the Domperidone worked. It really worked. I took it three times a day and so much more milk came out of my body. I was thrilled. I just thought about giving my baby antibodies and the "right" mix of fats etc etc and how amazing it was to be able to give her even one full bottle of breastmilk a day rather than every bottle being formula.

I had a really happy couple of weeks where my baby was lovely, I was satisfied about what I was feeding her, I was recovering from the birth, and despite the usual newborn stresses, I was feeling pretty awesome.

But, I found it challenging to stick to the three-times-a-day pill schedule. Newborn life is a whirlwind - I was pumping, washing bottles, sterilizing pump parts, changing diapers, entertaining visitors ... I never knew what time it was and kept missing doses.

"Oh no!" I thought. "I only took two pills today! I'm going to lose my supply!" But my supply didn't change. So I didn't think I needed to be so fastidious about taking the pills on time, or the right quantity.

And then one day I just forgot to take any pills. And my supply still stayed the same. I figured Domperidone had kick-started my body into producing milk, so I didn't need Domperidone anymore.

So, around four weeks after starting Domperidone, I went off it cold turkey.

And a week later - severe anxiety attacks. I was up all night, several nights in a row, utterly terrified about all the awful things that were going to happen. I knew it was irrational but I could not think of ANYTHING other than the bad things that might happen and how to prevent them. Couldn't sleep. Couldn't eat. Kept holding my breath and forgetting to breathe. Had this horrible feeling in the pit of my stomach that wouldn't go away. Wouldn't let anyone else hold the baby. Wouldn't leave the house. Crying my eyes out constantly. It clearly seemed to be a form of post-partum anxiety, but it was strange that it had come on SO intensely, SO suddenly, more than two months post-partum.

I luckily got excellent professional help. I saw my family doctor to rule out anything physical (she checked my thyroid, etc, but she didn't consider the Domperidone - I don't think she had encountered this side effect before), then got a referral to a post-partum mental health clinic at the hospital where I gave birth.

The post-partum specialist honed in on the Domperidone situation about five minutes into our first appointment and told me that with such a sudden onset, she suspected the Domperidone had caused my symptoms, although there was no way to know for sure. While she was helpful in teaching me how to manage my anxiety, it was particularly helpful that she understood that weaning from pumping was going to be a potential trigger too, and gave me a plan to reduce it very slowly.

So, four months of quite intense anxiety post-Domperidone, followed by a further year of gradual improvement, really affected our whole family. Life with babies is always challenging but this added a very difficult extra layer that we might not have had to deal with.

I think Domperidone really works for increasing milk supply but I wish:

1) everyone who mentioned it to me as a possibility (two GPs, two lactation consultants) had reinforced the side effects every time they mentioned it

2) the doctor who prescribed it to me had me repeat back or sign off on the reasons for tapering off - and not to infantilize birth parents, but perhaps with my partner or another caring adult present - to make sure I really really tapered off carefully

3) if there is a way to "undo" a failure to taper off by tapering back up, teaching that to anyone who prescribes Domperidone, adding it to the literature that pharmacies share

4) I got better "fed is best" messaging from all the baby books, nurses, pre-natal classes, etc. I had always thought of breast/chestfeeding as being the absolute BEST way to feed a baby but pursuing it "at all costs" is so much less healthy for birth parents and babies than just embracing formula as another awesome way to feed babies

A's Story:

When I attempted to wean off dom, I did it slowly, following the weaning schedule I found on the internet where you decrease by one 10 mg pill daily each week. Meaning you take 9 pills a day for a week, 8 pills per day for a week, 7 pills per day the following week, etc. Despite the slow weaning I was suddenly experiencing very intense anxiety, racing heart, constant shortness of breath, chest tightness, stress, depression, but mostly intense anxiety. I hadn't felt like this ever before once in my life so I am fairly sure it was the domperidone weaning. I had been taking it for 13 ish months. Once my babies turned one I slowly started weaning and initially didn't have any issues, reducing by one 10 mg pill per week. Then I got to 30 mg per day (3 x 10 mg pill) and this insane anxiety hit this week. I did not feel well at all, nor did I feel like myself. I was lashing out at my husband and kids, and was so so depressed. Thankfully it did improve with time, but that was a scary, scary medication that I'd never touch again. The stupid part is that I don't think I ever really needed it as my milk supply was fine for my twins, I simply needed more lactation and mental health support that was unavailable during a pandemic. Instead I had a pill pushed on me.

I's Story:

I began taking domperidone for lactation in September of 2021. It was prescribed to me by a breastfeeding clinic. After two short months on the medication, I experienced unpleasant GI side effects and decided to begin a taper. I began by reducing one pill every 5-6 days (from 12 pills) and experienced an episode of depression shortly after. At this point, my physician was concerned about my heart EKG results and advised that I taper quicker. I began to reduce one pill every 3 days. At this point my depression, anxiety and insomnia became unbearable. I have never experienced anything so scary in my life. I was unable to sleep at night, care for my children and had no desire to eat. I developed heart palpitations and hand tremors. I eventually realized this was related to the donperidone and stopped the taper. Thankfully my symptoms have improved but I have still not been able to get off of the medication and still have a long way to go with an extremely gradual taper. I want to caution all women when taking this medication to reduce extremely slowly. I deeply regretted ever taking Domperidone and I still have to find out what damage my body has sustained. Despite not going off cold turkey, I experienced awful symptoms which I was never warned about. This is not a drug that should be taken lightly and prescribed so easily to lactating women.

E's Story:

I started Domperidone (Dom) at around 5mths postpartum (pp) after trying a week of Reglan & feeling awful. A mom on my “What to Expect” App recommended checking out the Mother’s on Domperidone Facebook (FB) page to see if Domperidone would be a better option than Reglan. After checking the group I thought, “This is a miracle drug & will save my nursing journey!”

Backing up, I gave birth November 4th, 2021, a day after my due date. Baby was full term, healthy, latched right away & gained weight beautifully. I stayed home w/ him & exclusively nursed for 3.5mths. I had never pumped & baby never had a bottle. At 3.5mths pp my breastmilk supply regulated which I didn’t even know happened. No one told me that was a normal occurrence. I went from an always engorged, forceful letdown, always leaking oversupply to floppy empty-feeling breasts overnight. At the time baby was sleeping in bassinet next to our bed & I noticed he was waking up to eat every 1-1.5hrs throughout the night which wasn’t like him. I couldn’t feel letdowns & baby wasn’t swallowing. I panicked & had my husband get up & try to make a bottle but the baby wouldn’t take it. He screamed for the boobs. I spent the next few weeks trying to pump after feedings, power pump at night, eating & drinking the supplements to boost supply, working with many lactation consultants & feeding therapists. The baby would not take a bottle. Sometimes nursing would still work. I could get letdowns sometimes & not others. We had bought a scale & sometimes baby would have amazing feeds of 4.5-6oz at a time & other times he would be clearly hungry but only nurse for .5oz. I believe after I regulated I had a slow refill & letdown issue. I tried oxytocin nasal spray for letdowns which I think helped but people said it was bad to use long term. My lactation consultant mentioned a prescription drug Reglan to help with supply. I called my OB & she prescribed it, but warned it could make me feel sad. I held off on picking up the medication. A week would go by where nursing was working, followed by another week where it felt absolutely impossible to nurse & baby was still bottle refusing. Finally, at my wits end I had my husband pickup the Reglan for me to try.

After a week trying the Reglan I noticed a small increase. Baby was still bottle refusing & at this point he was probably around 5mths old & this had been going on for 1.5mths. He wasn’t losing weight but was always cranky when he used to be a very happy baby. I thought if I could just get our old nursing relationship back. A mom on a parents app I had suggested checking out Domperidone. It seemed like a miracle drug. I booked a virtual consult w/ Dr. Jack Newman’s Breastfeeding Clinic in Canada w/ his lead lactation consultant (LC). I explained how I could pump out milk just fine, but when it came to breastfeeding the baby I just couldn’t get letdowns. She said this was common. Delayed onset low milk supply I believe she called it. She said Domperidone could help increase milk & therefore help increase flow to baby & letdowns. They prescribed starting at 3 pills 3 times per day (90mg). I started Dom & after a week or so wasn’t sure I was seeing an increase so I emailed the LC & said I would probably stop the pills since I hadn’t seen a difference. She recommended going up to the next dose of 4x3 (120mg/day - 12 pills). I tried that dose & it worked! I was pumping a lot of milk & baby had finally started taking a bottle. It didn’t help our nursing relationship that much as I still seemed to struggle w/ letdowns while baby would try to nurse. He had his mouth evaluated several times too so I don’t think it was that. I decided to stay on Dom b/c I was creating a large freezer stash of milk. I was taking 120mg of Dom for about 3mths from end of June until end of September.

When baby was almost 8mths old I decided I should come off of the Dom. I wanted to get my period back & wanted to try for another baby, plus I was so sick of pumping & knew I had a large enough stash at that point. Dr. Newman’s clinic gave me instructions for how to wean. I searched the Domperidone FB Group to see if anyone had ever quit “cold turkey” & it seemed there were a lot of people who did for multiple children at high doses. I thought, I’m young & healthy & only on for 3mths I should be fine! I weaned correctly by dropping 1 pill per week (10mg) for 2 weeks. I quit cold Turkey from 100mg on September 26th, 2021. 2 days later I woke up & couldn’t open my eyes they burned so badly & we’re stuck to my eyelids they were so dry. My mouth was dry. I instantly began panicking. I developed hot flashes & night sweats. I usually always ran cold. I lost my appetite. I had severe insomnia, anxiety, & panic. My hair started to fall out. My nails all went thin & broke. My skin was dry. I thought, “am I in menopause?” I emailed Dr. Newman who said this was a rare reaction after only being on for 3mths & that I should have weaned off correctly. I visited the ER where they knew nothing of this drug. The ER Dr. recommended I stay off. She ran bloodwork, gave an IV of Benadryl to help calm me down, & prescribed Hydroxyzine as needed for anxiety. The next day I visited my OB’s office for bloodwork. She also advised staying off the drug since it had been 9 days off at that point. She prescribed Lexapro. Upon coming home from the OB appointment, I was so anxious I was shaking. My OB never sent the Lexapro script & the office was closed for lunch. I was so anxious I just wanted to get moving on something for relief. My mom recommended getting back on the pills. I thought it was a bad idea since it clearly dropped my hormones & I wanted to be done pumping & get a period back. I asked the Domperidone group & a lot of people suggested going back on the pills for anxiety & insomnia relief. I reluctantly took 3 pills right then & felt a little better. The next day I received my hormone results from my OB. All looked okay except for low estrogen (20) as I was expecting. My prolactin also went back to normal range at 10.1 & I still had a full supply. But, I continued taking the Domperidone trying to re-wean off. I never re-started at a good dose I don’t think. I would randomly take some here & there never knowing if I was doing the right thing b/c I had no Dr. to help. After 1.5mths, many ER trips, & a mental health stay, I finally quit the Dom again. I had been on 2x2x2 (60mg) at the time. I thought just getting off for good would help & let the body heal despite the anxiety. This was the worst decision I ever made & I believe is what cost me my life. 2 days after the 2nd cold turkey stop, I stopped sweating completely. I had gone from having hot flashes & night sweats every night to nothing. I stopped feeling thirst & hunger. Insomnia worsened. My eyes got 10x more dry & all tearing stopped. My blinking slowed. My mouth is so dry my teeth ache. I have no emotions. My milk supply shutoff overnight. My breast tissue deflated. I had my estrogen tested 2 days after the 2nd cold turkey stop & it returned at 0. My Prolactin was the lowest the nurse had seen at 2.6? It had returned normal (10.1) after the 1st time off & I still maintained a supply.

I’ve been off the drug for 2.5mths & nothing had gotten better, only worse. The symptoms are debilitating & I cannot care for my son anymore. I can barely get out of bed. I had to start an estrogen patch due to low levels & never getting a period back. I believe in my body, Domperidone would drop my estrogen upon stopping each time. After the 2nd time stopping, I went without estrogen in my body for so long it permanently destroyed dopamine & receptors. This caused debilitating autonomic nervous system issues (lack of sweating, slowed blinking, etc). I’m currently trying to get autonomic nervous system testing. Something isn’t right. This drug may lead to my death & it’s agonizing because my son is only 11mths old. I hate that I ever took this drug especially when I didn’t need it. Domperidone is dangerous & a potent Dopamine D2 antagonist. It clearly worked on other parts & systems in my body & crossed my blood brain barrier readily.

I don’t believe Domperidone should be able to be prescribed & shipped from other countries. I made a mistake but I don’t believe I should die from it.

N's Story:

I struggled with chronic low supply due to Insufficient Glandular Tissue (IGT) and a few other challenges including but not limited oral ties and flat nipples, which made breastfeeding a nightmare since the beginning. My baby was jaundiced so we had to introduce formula since day one and I started pumping in an effort to have my milk come in and establish a supply. I quickly realized I wasn't making nearly enough to feed my baby so I started working with a Lactation Consultant who recommended herbal supplements and also mentioned I could take Domperidone if the herbal supplements weren't enough. I reached out to my midwife and she said Domperidone was a good idea and prescribed it to me (90 mg/day) with no blood work to confirm that my prolactin was in fact one of the issues (I was around 3 weeks postpartum and to this day I have no idea if I actually needed Dom). After about a week of taking the medication, I experienced a slight increase in supply and I went on to produce between third and half of my baby's daily milk intake by the time I was 3 months postpartum. At 5 months into my breastfeeding journey (exclusively pumping) I decided I wanted to start weaning off Dom because pumping wasn't working for me any longer and I wanted to stop. I did some googling and joined a Domperidone support group on Facebook to find the best way to wean and based on the information I found I decided to drop one pill (10 mg) every week to wean over 9 weeks. This process worked well for me until I reached a dose of 50 mg/day. Any time I tried to go down to 40 mg/day I would experience severe migraines, night sweats, shivering episodes, pelvic pain, dry mouth, insomnia, mood swings and panic attacks. I tried to ride it out several times to see if after a few days my body would get used to it but it only got worse and worse so I ended up going back to 50 mg/day every time. I was feeling miserable, my PPD symptoms worsened and I started panicking about not being able to get off the medication. After a month and a half of trying I reached out to a physician that specializes in lactation and she recommended a different approach. She told me to evenly space out my doses and start increasing the number of hours between them every week. I started taking 10 mg every 5 hours, the following week I took 10 mg every 6 hours, and so on until I was off Dom. It took me over a month to completely stop and I still had to ride out bad headaches and increased anxiety symptoms but this method was the only way I could wean. I would have liked to have A) more information about this medication before requesting a prescription (e.g. possible side effects, safe dosage, weaning process, etc.), and B) a postpartum care team that was more educated on this subject to at least know that it's dangerous to prescribe this medication without even knowing if prolactin was the issue.

A's Story:

I was on domperidone for a couple months, once I stopped I had the most extreme anxiety I’ve ever had. That stuck around for like 3 months and then I felt so much better! I probably won’t ever take dom again if I have another baby. That major anxiety is just not worth it to me. I’d rather receive donated breastmilk or buy.

P's story:

I had been on Domperidone for 12 months at 90mg for most of that duration. I needed it due to a tongue tie issue with my kid that took several revisions and three months to settle. In that time, after a week-two mastitis, I needed to reëstablish supply, which never really came in fully, even after a stint of some weeks at 120mg upon receiving encouragement from my LC. I tried to progressively cut down following loose guidance from the LC and did so over the course of 6 weeks. During the first days and weeks after having gotten through the weaning process (of the drug; i was still breastfeeding) I noticed the feelings of dehydration and dizziness, the latter which was so intense I needed assistance caring for my child. I felt back to normal after around 10 days. Fwiw, I gained a lot of weight while on Domperidone, though it wasn’t the only factor (pandemic, depression).