A new mom, she expected breastfeeding to be a sweet experience. Yet every time she nursed, she was hit with sudden terror or sadness.

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Alia Macrina Heise, an international board-certified lactation consultant based in the Finger Lakes Region of New York, experienced extreme sadness herself while nursing her third baby in 2007. She turned to the Internet and found message boards where other women described experiencing the same thing.

Heise has spent years since exploring the phenomenon with other lactation professionals, eventually naming it dysphoric milk ejection reflex, or D-MER. Since 2007, thousands of women like me have searched online about their unsettling symptoms of intense sadness while nursing to find the perfect explanation in D-MER.

The condition is different from postpartum depression, a severe form of the mood disorder that hits some women after birth and can persist for weeks or months. It also differs from breastfeeding aversion and agitation, a condition characterized by negative feelings related to the physical touch of nursing. Most medical professionals aren’t familiar with D-MER. Heise says she estimates only about one-third of lactation consultants know about it, and less than 10 percent of obstetrician-gynecologists.

So far, Heise says she has studied 3,000 nursing women with D-MER. Although more scientific research needs to be done to understand it — only a few small studies have been done on the condition — the common theory is that D-MER is related to irregular activity of the hormone dopamine.

Lactation is controlled by a complex network of hormones, two of which are prolactin, which stimulates milk production, and dopamine, the “feel-good” hormone that helps control the brain’s pleasure center. Prolactin must rise during a milk letdown. For prolactin levels to rise, dopamine levels must drop, and it is thought that this process doesn’t work right in woman with D-MER, Heise says.

“It’s theorized that in mothers with D-MER, something about that drop in dopamine is malfunctioning,” Heise says. “It could be dropping too fast, it could be dropping too far, it could be dropping too wide, it could not be stabilizing as quickly as it’s supposed to.”

Alison Stuebe, a member of the American College of Obstetricians and Gynecologists (ACOG) Breastfeeding Expert Work Group and president of the Academy of Breastfeeding Medicine, says medical professionals are reluctant to talk about it because there is a lack of data surrounding D-MER.

“Just because we don’t understand the physiology doesn’t mean it doesn’t happen. . . . It reflects the under-prioritization of moms and women’s experiences in general,” Stuebe says.

Women with D-MER typically experience these sadness “attacks” during all letdowns, meaning it occurs while nursing, pumping and during leaks. The condition can be mild or severe in intensity, and the episodes can last anywhere from a few months to the entire course of breastfeeding.

Some women have it while nursing all of their children, while others have it with only one child. Most women typically first notice D-MER within a week or two of nursing their baby as it takes some time to realize the feeling is connected to the milk letdown reflex, and not to postpartum fatigue or hormonal swings, Heise says.

My daughter is now 4 months old, and I’m just starting to see relief. Early on, I had D-MER episodes every time I fed her, every time I pumped breast milk to give it to her later, and every time my milk leaked, which at one point meant 10 to 15 times per day. Now, the attacks only happen when my breasts are engorged and I begin nursing or have a spontaneous letdown.

The way D-MER feels varies from mother to mother. In my case, it feels like something awful has happened and someone is somberly saying, “We need to talk.” Jackie Phan, 31, a mother of three who lives in Las Vegas, says she has the overwhelmed feeling of drowning in 100 tasks she can’t complete. Danielle Hall, 34, a mother of three in Thorsby, Ala., says it feels like the terror and upset she thinks someone has if they have been physically violated.

“We picked the word dysphoria for a reason,” Heise says, adding that the definition of dysphoria that best fits D-MER is a state of feeling very unhappy, uneasy or dissatisfied — the opposite of euphoria. “The emotional experience really can vary. There are some mothers who identify with the idea of homesickness versus mothers who feel rage.”

There is no cure or treatment for D-MER, other than an end to breastfeeding, Heise says. Some women — like Heise — have benefited from taking Wellbutrin, an antidepressant.

In a Facebook group Heise created for moms with D-MER, more than 3,500 women trade tips and tricks. Some suggest drinking an ice-cold glass of water as soon as you feel an attack coming. Others tout the benefits of taking a magnesium supplement. Thorsby takes several deep breaths in succession, while Phan gives herself a mental pep talk to calm down. I close my eyes, drink cold water if it’s nearby and think of something that brings me joy until the attack subsides.

Even with these intense attacks, I’ve still been able to benefit from the baby-mother bonding that breastfeeding provides. D-MER is a physiological condition, not a psychological one, Heise says, which is reassuring — the negative emotions I feel are never directed at or related to my baby. Once the attack subsides, I can enjoy the rest of our nursing session. I feel our closeness, focusing on the way my baby holds my finger while nursing or gently coos at me when she’s done.

I’ve found comfort in the Facebook group Heise created, as have Hall and Phan.

“It was nice to see other people were experiencing the same thing because, at first, I just felt so alone,” Phan says. “I felt like I was abnormal.”

Still, women with D-MER — especially those like me who hope to breastfeed more children in the future — cling to the hope that more research will be done to find a treatment.

“You just shouldn’t have to feel that way while feeding your baby,” Hall says.

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