Estimated reading time: 10 minutes
An interview with Alia Macrina Heise IBCLC and Diane Wiessinger, IBCLC
Photos: Suzie Blake
D-MER (Dysphoric Milk Ejection Reflex)
Alia Macrina Heise is an International Board Certified Lactation Counselor who suffered some intense negative emotions while breastfeeding her third baby. When her milk let down she felt unpleasant and uncomfortable. Breastfeeding Today asked Alia and Diane Wiessinger, IBCLC, some questions to learn something about these bad feelings and the naming of the condition.
Alia, can you tell us please about the feelings you experienced when nursing your baby?
The best way to understand my feelings during a D-MER is to refer to what I wrote in 2007. These are excerpts from my first post on D-MER in a thread titled “Only When Nursing” in the Postpartum Depression section of a natural parenting forum:
It’s a sickening feeling in the pit of my stomach. There is a strong aversion to food. I don’t feel sad, but I feel “icky and yucky.” It is a feeling I seem to have associated with strong feelings of worry and guilt in the past, because when I first started experiencing the sensation I kept searching for what I was feeling guilty or worried about. It turns out that there was nothing. It was just that same sinking feeling in the pit of my stomach that makes me lose my appetite that I had experienced in the past for these other reasons.
I then began to analyze not just what the emotions were, but when they occurred, how long they lasted and so on. When I first realized I was having these negative emotional surges throughout the day, I was very unsure of what could be causing them or even where to begin looking. At first I didn’t connect them with breastfeeding, because they happened before let-down and they happened with every let-down I had, including spontaneous let-downs—of which I had many. By the time I finally found a particular thread on a forum that helped me put two and two together, my baby was almost a month old. I began to track and document them and posted this:
The way I am feeling is connected to feeding and milk. The reason I didn’t realize it before is because it is related to LET-DOWN specifically. In fact, now I can tell a let-down is coming because of how I SUDDENLY feel. A let-down in between feedings is much worse. I can tell I am about to let-down (about 60–90 seconds after the emotions hit) because of how I feel it’s a horrid feeling lasting about two minutes. This happens several times during a feeding, but those times are not nearly as intense as the emotional feelings I get in between feedings during a spontaneous let-down. I think this is because during feeding I am at least feeling more connected to my baby and the nice feelings of nursing and so the yucky emotional stuff is easier to ignore.
I feel able to cope with it, as I know now what it is and why. I think also as time goes on (my baby is four weeks now) it gets less intense. I lost a lot of weight quickly in the beginning because food always sounded so horrible.
I am able to eat now … it just sometimes doesn’t sound good at the moment or after I eat, I momentarily wish I hadn’t.
My biggest thought right now is about NAMING this. If there are so many of us and it seems to be mostly unheard of, it ought to have a name. Also as a breastfeeding counselor I would take comfort in knowing what this issue IS.
Were you suffering from postnatal depression?
I was not. When I was not in the act of breastfeeding, and even in-between let-downs, I felt normal and fine. It was an extremely emotional roller coaster to go from a normal or good mood to crashing down into a D-MER “state” only to bounce right back up again.
What led you to investigate your condition?
Since I had breastfed my previous two children “normally” and this was the first time experiencing the phenomenon of D-MER, I knew this was something “not quite right” and that there must be an explanation. So after discovering that my awful feelings were directly related to let-down, I went looking for answers. I was a lactation counselor working for WIC and had been in the arena of breastfeeding helpers for four years. I had never heard of such a thing happening to another breastfeeding mother, but asked myself, “Why would I be the only one?” But my first attempts at information gathering, of delving into lactation texts, came up empty. So I went to the next obvious place—the Internet and lactation professionals. I started doing archive searches on Lactnet (a major online resource for the breastfeeding support community), which helped lead me to Diane.
How did you find other mothers who were suffering similar feelings when breastfeeding?
Now when you Google words like “sadness while nursing,” “depression with milk ejection” or “anxiety before let-down” you get answers. In 2008 you didn’t. I went to the breastfeeding and postpartum depression forums of a popular, natural parenting forum and lurked. I wish I could say I was brave enough to post the question myself. But I had personal doubts. At that point I had not been able to dig up any information and I was starting to think that it was all in my head or an oppressed memory or some emotional quirk that would label me a “failure as a mother.”
But the forums led the way. I finally found that first thread—it had the words that made me sit up and say out loud, “Aha! I’m NOT the only one.” Once that was established it was a matter of finding out how not alone I actually was—the Internet to the rescue. Armored with the knowledge that I was not a lone freak, and that surely this was hormonally based, I started posting and posting and posting. As a result I found hundreds of women had experienced D-MER in the past or were currently experiencing it. And they had—with the exception of one or two—all been lurking as I was, afraid to post, afraid to be the first one to ask. (One or two women had asked before me but their threads had gotten buried and ignored in the end.) It was about timing, numbers and persistence. Persistence was something I wasn’t short on. I started a blog after I had exhausted the forums, and ultimately started www.d-mer.org in order to get information and support out to other mothers and to medical lactation professionals.
What did your investigations reveal?
We were able to confirm quickly that it was a physiological reaction, not a psychological one. Based on its behavior we were able to deduce that it was a hormonal reaction. We really needed to find out which hormones were doing what. We consulted with oxytocin specialists, prolactin experts, lactation professionals who studied thyroid function, and those in the field of endocrinology. The word dopamine was finally brought into the conversation. There’s just not much information out there yet about dopamine in regards to its role in lactation. We did find out that for prolactin to be involved in lactation, dopamine has to get involved, too. Once we were able to start asking the right questions about the right hormones to the right people we made progress. Then we started experimenting with the idea of dopamine: looking at what increases dopamine, what inhibits it and how these things affect a mother’s D-MER. It sure seemed that anything that caused an increase in dopamine alleviated a mother’s D-MER.
What led you to give a name to these feelings?
Quite simply, I, along with the other women I was working with, got tired of calling it “it.” We realized that there are other conditions (such as Sheehan’s syndrome) with a much lower prevalence than the condition I was experiencing that have been named and included in every professional lactation text. There was no reason not to name it and many reasons to do so. The word “dysphoria” is a medical term and means an unpleasant or uncomfortable mood, such as sadness (depressed mood), restlessness, anxiety, or irritability. Etymologically, it is the opposite of euphoria. This described it perfectly. Because the condition was directly related to the milk ejection reflex, or let-down, we chose the term dysphoric milk ejection ejecton reflex (D-MER). D-MER is part of every MER to some degree (usually less intense as the feeding goes on, although not always).
LLL Leader and International Board Certified Lactation Consultant Diane Wiessinger, MS, is interested in learning more about this phenomenon, too.
Diane, what do you think is happening to these mothers who are experiencing such negative feelings when letting down their milk?
Well, it’s been an interesting, twisty-turny path! When Alia first emailed me, I did what every other person she’d approached did. I said that it sounded like some sort of postpartum depression and suggested she look for help along those lines. I basically “blew her off.” It must have made her grind her teeth in frustration! A couple months later she called me, and this time I really, truly listened (those LLL Leader skills!). From what she described, it was pretty clearly physiological, and not psychological, not some sort of past trauma coming to the surface.
It was too … mechanical. This triggers it, that doesn’t. This makes it worse, that makes it better. She took some pseudoephedrine for a cold at one point—she didn’t realize that pseudoephedrine can wreak havoc with a milk supply—and happily, or maybe significantly, it didn’t. Within hours, her D-MER had disappeared altogether, and she called to ask, “What happened?!” It came back as the pseudoephedrine wore off.
We brainstormed with others who were willing to hear us out without labeling it “depression.” We drew up a chart of what made it better and what made it worse, and looked at how those drugs or activities affected the hormones that we thought might be involved. Binging on chocolate ice cream helped! High stress made it worse. Alia kept records of the relative intensity of each episode—something that wasn’t that easy to do, because in the midst of an episode she literally couldn’t multiply two times three! It was a really intense time for her, trying things, keeping track, getting her hopes up, having it not work out.
Her D-MER was so clearly tied to her milk releasing that at first we figured oxytocin had to be involved. We learned about other hormones like vasopressin and dopamine, and we looked at familiar ones like prolactin. When we looked at how quickly it came and went, and what made it better and worse, by far the best fit was dopamine. When we looked back at times when she’d felt something very similar but wasn’t lactating, dopamine fit. When she tried a prescription drug that increases dopamine levels, her D-MER got better.
What help is available for mothers suffering from D-MER?
At the moment, we think that anything that increases dopamine levels without causing them to crash later (which caffeine seemed to do) would help. Some things are clearly non-starters. You can’t live on chocolate ice cream or pseudoephedrine, and smoking is obviously out. Alia has listed a lot of other choices on her website, from simple things like getting more exercise and more sleep to a herbal remedy to prescriptions that you can talk over with a physician.
Is the condition curable?
We haven’t found anything that stops it so that it never comes back, except time. Most women find that it gradually gets better over time and eventually just goes away. Unfortunately, the worse it is early on, the longer it seems to go on. For some, it doesn’t go away completely until weaning. Happily, almost everyone Alia talked with found that what helped as much as anything—and was usually enough in itself—was knowing they weren’t crazy, they weren’t alone and it wasn’t going to hurt them or their baby.
What do the researchers say?
Researchers? What researchers?! You’re talking to them. One D-MER mother and one LLL Leader/IBCLC. We’ve written a paper about Alia’s experiences and what our guesses are Dysphoric milk ejection reflex: A case report Int Breastfeed J. 2011; 6: 6 and that we hope will attract others with much better backgrounds than ours. We just don’t have the solid knowledge or understanding to do more than hand this off to others.
Here’s what we think may happen, and what we couldn’t confirm through reading: when a milk release is triggered, the oxytocin level shoots up and, separately but in response to the same milk release trigger, dopamine makes an abrupt but brief drop. Since dopamine is a gatekeeper that blocks release of the milk-making hormone prolactin, we know dopamine has to drop to allow prolactin to rise. But we couldn’t find anything to say when that drop occurs or how abrupt or brief it is. Who knows—maybe it isn’t in the literature yet and D-MER mothers will be the ones to provide the answer!
Where do we go from here?
We really hope that this catches the eye of people who are already doing research on dopamine. Since dopamine changes happen within the brain, they can’t really be measured in humans; researchers tend to study something like rats. But here’s a group of humans who can feel a particular change instantly, any time a milk release is triggered, and describe it in detail afterwards. Some researchers have said that dopamine is like a keyboard that can be “played” to achieve anything from desire to disgust. Well, D-MER mothers can tell them exactly where they are on the keyboard. I was fascinated that some of the mothers who wrote to Alia described feelings of “homesickness.” Now, that’s a very, very specific emotion that sounds to me like the knife edge between pleasure and pain—a painful recollection of something pleasant. How cool that information would be for the right researcher!
Among the people we talked to were menopausal women who felt dysphoria with hot flashes and a woman who felt Restless Leg Syndrome with hot flashes. RLS is treated with dopamine. What does all this have to say about the hormones of hot flashes? One man even said that, as far back as he can remember, he’s occasionally felt dysphoria in the midst of anticipating something pleasurable. If he’s thinking about a trip, suddenly he can think only about losing the tickets. It sounds a whole lot like D-MER. So I think this could go in a lot of directions. I think things similar to D-MER are out there, and it’s just never occurred to those who experience it that it could have any significance.
How can D-MER mothers share their experiences?
In addition to www.D-MER.org there are D-MER Facebook pages that are active with posts and discussions 500 or More with D-MER. It’s important that mothers with D-MER continually feel that they are not alone. Alia loves to hear from and support women with D-MER. This article is an updated version of one first published by Breastfeeding Today in 2011.
For treatments see Breastfeeding Support