From Diane Wiessinger, MS, IBCLC:
There aren't many of us working on D-MER yet. The creator of this website called me in 2008, tracking me down through a query I had posted two years earlier about a mother I now know must have had D-MER. But finding my name didn't mean she had found someone who knew something! Like everyone else, I had been unable to find any references to it, had figured it was a rare case, and...had let it go at that.
Happily for all of us, the woman who put this website together wouldn't take "I don't know" for an answer. Together, we've been slogging through her own situation and the whole D-MER picture, looking for an answer for her "how can I stop this?" question, looking for a cause (the "why me?" question) and looking for a mechanism ("what's happening?).
Scratch the cause part for now. We just plain haven't a clue. Mechanism and solution? We're doing much better there.
We started by reviewing the possibility that it was psychological. Nothing fit. It's too mechanical, too reflexive-seeming, too standardized among D-MER moms, too responsive to chemical tweaking. So scratch that avenue.
A hormone gone awry? That was an excellent fit. And the fit seemed to be oxytocin. We described it to the Best in the Business - experts in drugs, in oxytocin, in the mechanics of milk release, other lactation consultants. None of them knew any more than we did. We put together a small team of lactation consultant friends of mine scattered across the United States. We kept notes on when D-MER was better and when it was worse, pored over your questionnaires, made charts trying to correlate changes with circumstances...and we collected words. Oxytocin, vasopressin, amygdala, prolactin, hypothalamus, pituitary, epinephrine, norepineprine, dopamine... Dopamine? That one suddenly fit a whole lot better than oxytocin, but what lactation consultant has ever talked about dopamine?
Dopamine is prolactin's gatekeeper, and of course everyone in breastfeeding has heard of prolactin. What we don't all know (though it's been in the literature for decades) is that prolactin rises because dopamine drops. Prolactin drops because dopamine rises. We lactation consultants love prolactin, so we ought to dislike dopamine... except that maybe it's possible to have too little, or to have it land in the wrong spot, or something. It kept coming back to dopamine.
So that's where we are now: a tiny team of experienced lactation consultants who are having to learn about neurophysiology, with an outer layer of more knowledgeable but less involved people to keep us from going too far astray. No studies, no real research (though a case study is being written), no grant money... And a growing level of interest all around us. Mothers, authors, researchers - this is not a topic that's going to flare and die.
Be patient. We're getting there. Check out the page on a possible prescription solution. Try some of the lifestyle changes and herbal options. And please let us know your results!
In 23 years as a breastfeeding helper, 18 years as an IBCLC, I've never been involved in the very beginning of a new concept like this. Frankly, this kind of thing doesn't happen often. I sometimes feel as though I have a tiger by the tail. But it sure is an exciting ride!
Diane Wiessinger, MS, IBCLC
International Board Certified Lactation Consultant
Ithaca, NY USA