Is D-MER Unnecessary Labeling?

Is D-MER unnecessary labeling?

Any mother with D-MER knows the answer to this question, but in every blog post about D-MER out in cyber space this question is undoubtedly alluded to in the comments. Sometimes more directly then others.

I will share some examples from some of the naysayers:

Sorry, but this doesn't look like a very scientific pursuit. It's "thoughts and theories" from unnamed sources, and it appears to be based mostly on anecdotal evidence and surveys, not scientific testing.


Do they have to name everything? Its probably because woman who breastfeed are so tired and emotional.


While I’m sure this exists and can be incapacitating like a lot of horrmonal problems are, the cynic in me says that it’ll become the new fake excuse women use when they aren’t successful at breatfeeding. It’ll be the “low milk supply” of 2011. 



Mmmmm…I am skeptical.


 I didn't say it wasn't real, I just think not everything should have its own catergory.


Everything is a medical condition these days. I am very cynical. I am not discounting that women have variety of emotions while breastfeeding, especially when they are a first-time mom. Heck, mine was rocky and stressful and in the beginning I dreaded breastfeeding because my baby either did not latch properly or wanted to breastfeed non-stop. And when I took that moment to sit down with the baby during those time, I would have the time to reflect on my emotions and feel all sorts of conflicting stuff. Love, affection, frustration, exhaustion, despair etc. It’s a bit like sitting down at the end of a busy day and realizing tired you really are, which you don’t quite acknowledge when you are running around. Just because the times you get in touch with your less than ideal feelings is when you sit down to nurse does not mean nursing “causes” it. Of course the medical community and researchers are all over it. I am a researcher and I am always looking for the next idea to write a paper on. And if this can possibility be treated with your run of the mill therapy and depression drugs, then there is not even much hard work involved in developing a new treatment. Write a couple of papers, generate some publications, call it a disorder to validate the feelings of the affected, throw some breastfeeding friendly anti-depressants at it, problem solved.


These comments are in the minority in comparison to the women who post in comment sections because they have had D-MER. So in fact, you can say that D-MER is more common than it is to believe that D-MER is unnecessary labeling. Nonetheless, the subject deserves at least a snippet of my attention and a small place in cyber space to be addressed.

It has been said that since women are highly emotional and hormonal after birth, that it is to be expected that they have a period of difficult adjustment and that the emotions they are feeling prior to letdown are just part of this. It has been said that since D-MER often does not need any kind of treatment, that it doesn't need a name or a definition. It has been said that not everything needs a name and that it is unnecessary and overkill to be defining an experience such as D-MER. It has been said D-MER isn't as prevalent an issue as the website makes it seem and that it does not need recognition. Some have gone as far to say it is just another hormonal flux, no different then PMS.

Here are some thoughts from some supporters of d-mer.org:

Jessica from The Leaky B@@b says, "When there is something outside of normal, when there is a group of people affected by it, naming the condition helps tremendously. For starters, it validates those struggling with it and can help remove barriers of shame so they can begin to seek help. Then it opens doors to research so care providers can offer quality support and recognize it as legitimate. Those struggling then have support and information from the medical community making it possible to find others that can relate and not feel so alone which empowers them to work through it. Naming a condition also opens doors to getting funding for research and thus finding treatments or at least information."

Diane Wiessinger made a lovely point in regards to why D-MER should be in breastfeeding literature. She pointed out the the occurrence of Sheehan's Syndrome (and it's effect on breastfeeding) is so low that she has only come across one case of it in her 25-ish years of very successful practice, and yet this is a condition that is addressed in all the breastfeeding professional's literature. We don't know the full prevalence of D-MER, but we know it's much more common than Sheehan's Syndrome.

Also, some other D-MER mothers had some thoughts on the idea of D-MER being unnecessary labeling:

If someone told me D-MER was unnecessary labeling I would be angry, knowing that there is a reason why I don't feel the same breastfeeding happiness as other mothers seem to has been a big help to me - when I had my first baby I thought maybe I didn't love her the way I was supposed to or that I wasn't meant to be a mother or to breastfeed. Now I understand that it has nothing to do with that, it's just that my body reacts differently, if I know why it's happening it is easier to cope with and there are no questions about my love for my child, no worries, I just have to learn how to handle my let-downs.

How could someone even come to a conclusion of "unnecessary labeling" unless they have personally delt with it?!! I would be very upset because unless you have experienced it and know just what it feels like to not be able to enjoy that same wonderful feeling that most moms feel while breastfeeding, then you can not properly label it "unnecessary" and I would take great offense to it because it is a very saddening and challenging ordeal to have to go through! Thank God I have learned what this condition is so now I can better get through it this time around.


I would be offended if someone told me D-MER was unnecessary labeling! It really affected me in the early stages of nursing my oldest, to the point where I thought there was something wrong with me (like I was failing to bond with him properly). I didn't know it had a name at that point, but there were a few message boards where other mamas revealed they were experiencing the same thing. That alone helped me tremendously, & finally learning that it has a name & that there's an explanation for it both make an even bigger difference. I am expecting my third baby with a lot less apprehension purely because of the fact that I know that what I've gone through/may go through is real, acknowledged & (somewhat) understood.


I'm not sure what someone would mean by "unnecessary labeling." It sounds more like they're doubting the existence of this condition in which case I wouldn't even bother. But a label is important to provide a common language to those experiencing it and those dealing with people who are (spouses, doctors, friends, family etc...) It is helping in sharing what we are going through to have a name to put to it. I guess we could all relate to one another by saying "you know, those horrible feelings I have associated with every let-down," but it seems "d-mer" is a better shorthand and way to communicate about it!


Here is your bottom line: we have found that women with D-MER find the most successful "treatment" is the validation of their experience. This comes from diagnosis. Hundreds of babies have continued to be nursed because of the labeling of D-MER. This can not be devalued. 

FAQ Revival

There are lot of good frequently asked questions on d-mer.org but they don't always get found within the site and so they still get frequently asked. Here is a place where every once in awhile we will revisit one of them.


Are there physical manifestations with D-MER?

D-MER does not have any physical manifestations. Some mothers with D-MER describe a stomach malaise with their emotional response, but it is not nausea. Any other physical response (itching, headaches, drowsiness, thirst etc.) has not been connected to dopamine or D-MER. A women can have any of these physical symptom in conjunction with D-MER, but it is not part of the D-MER. D-MER is often said to have a physical undertone, in the form of a hollowness in the pit of the stomach, and though it's not nausea, food and drink can abruptly and briefly become disgusting.

Question of the Day- Support Groups

Q: How would you suggest getting the word out on D-MER and starting a support group here in my home state? I'd like to host a monthly get together where women can discuss their symptoms and get support.

A: Great question and a wonderful plan!

Do you have a local free parenting publication there? Many places do, especially if you are near a big city. You could write a small "blurb" about D-MER and include contact info for mothers to contact you about a support group.

Also, mail out letters to the Le Leche League groups in your area letting them know about your support group. Follow up by visiting the meetings in person and introduce yourself. Take the opportunity to tell the group member about D-MER.

You could also put flyers in the WIC offices. Offer to hold a brief "in service" for the peer counselors at your local WIC agency and tell them about D-MER, include information for your support group.

Make a packet of information about D-MER, include information about your support group, and mail it to the IBCLCs at your local hospitals.

Wherever you have lactation professionals and nursing mothers is a place to educate and spread the word!

The Question of Formal Diagnosis

It was brought up recently about formally diagnosing D-MER and how that can be done. Honestly, it comes down to the fact that formal diagnosis is not necessary. There is no test that can be done for D-MER, there are no lab results to read or physical exam that can tell anyone anything about D-MER. The diagnosis is all going to be based on pateint report. This doesn't belittle the D-MER experience, because there are lots of medical conditions that are diagnosis and treated based on patient experiences. D-MER is among them.

If a mother does not feel the need for treatment then there is no need for her to even get her HCP involved. The mother, based on her experience and after doing a little research, is going to know more about D-MER than many health care providers do. It is reliativly simple by reading through the information on d-mer.org to determine if you have D-MER or some other breastfeeding or medical issue.

If a mother is going to wean because she can not tolerate her D-MER, then she should explore treatment options. Many HCPs will prescribe and antidepressant like Wellbutrin even if they are not familiar with D-MER but because they assume the mother has PPD, and mothers can often ask for a specific drug. Since patients should be part of their health care team themselves this is an appropriate action. Of course it is better to work on educating your HCP about D-MER in the way of handouts and web links, also the publsihed study about D-MER from the International Breastfeeding Journal can be give to a HCP as well. As more information is published it is going to get harder and harder for HCPs to be dismissive of D-MER.

One mother said that she "had numerous midwives and doctors (even a lactation specialist) who had no idea what she had, and only suggested to wait it out." In this case, and if the mother was not going to be able to continue nursing without some kind of treatment, I would suggest that a mother informs the HCPs that "waiting it out" is not the current recommended treatment option for a mother with severe D-MER who is on the brink of weaning. Then ask them if they would like some of the most current published information about the condition. Sometimes we need to stand out a little taller and let those people who are being dismissive know that we are strong, educated, competent women who have come to collaborate on our health care with them. We do not need to roll over, be told what to do, be walk on or let them dismiss us without proper care and time.

D-MER in a Nursing Mother of Twins

Question: 
I was under the impression that D-MER is more common among mothers of twins because they experience two let-downs at once, is this true?

Answer:
There has not been enough investigation as to the prevalence or experience of mothers nursing twins to know this for a fact. It is not probable that nursing twins is a "risk" factor for D-MER. At this time we have found nothing that increases the likelihood of having D-MER. The extra quantity of milk would not be a determinant of D-MER. It is possible in theory, that because prolactin levels would be higher in order to support two babies, that a mother with D-MER would have much more severe D-MER because of the higher prolactin levels, but this is just a guess based on what we know about D-MER at this point.

Feel free to email your questions to info@d-mer.org

D-MER vs The Dementors

The Dementors are creatures from the best selling book series, Harry Potter. The name Dementors comes from the words dement, "to make insane", and tormentor, "one who afflicts with great suffering", Dementors are ones who inflict insanity. Dementors are described as follows:

"Dementors are among the foulest creatures that walk this earth. They infest the darkest, filthiest places, they glory in decay and despair, they drain peace, hope, and happiness out of the air around them... Get too near a Dementor and every good feeling, every happy memory will be sucked out of you. If it can, the Dementor will feed on you long enough to reduce you to something like itself...soulless and evil. You will be left with nothing but the worst experiences of your life."

Any mother who has nursed through D-MER can relate to this description. In fact we have had several mothers come up with the comparison of Dementors and D-MER quite on their own. We have heard it enough times that we even included a quote about it from a mother in the case study about D-MER that was published in International Breastfeeding Journal.

Dementors feed off human happiness and cause depression and despair to anyone near them. If allowed they consume a person's soul, leaving their victims in a permanent vegetative state, and are often referred to as "soul-sucking fiends". They are known to leave a person as an "empty-shell." It is many a D-MER mother who has felt like nothing more than an empty shell during so many of their breastfeeding moments. D-MER sends surges of depression and despair to all of its victims and doesn't release its grip until the milk release ends, only reappearing again and again with each release.

Mothers nursing through D-MER often feel like prisoners to a reflexive reaction they cannot control while they are breastfeeding. These nursing mothers try to claw their way out of their own head, and to try and do anything but think about the destructive feelings they are feeling during D-MER. Dementors don't need walls to keep the prisoners in, not when the prisoners are trapped inside their own heads, incapable of a single cheerful thought.

Many mothers talk about the deja vu feeling they experience during D-MER. They remember previous experiences that caused them to feel equally as horrible. They relive old memories and feelings again and again as their milk releases. Dementors sense and feed on the positive emotions of human beings in order to survive, forcing their victims to relive their worst memories over and over again.

If a Dementor latches its mouth onto a victim's and sucks out the person's soul, there's no recovery. The person will just exist as an empty shell and your soul is gone forever, it's lost. This is not true of D-MER. Dysphoric Milk Ejection is temporary. It's not a soul sucking demon that can steal your soul or your life. It can be a life changing experience, for the good or the worse. It can tear down your self esteem or create the strongest women this world has yet to see. A mother has control over how her D-MER will affect her ultimately. It's true she can't control it while it's latching itself on and sucking the joy out of her soul but she can decide how to feel about herself once it's released its brief grip. In the end, she can choose to beat D-MER instead of letting D-MER beat her.

I hope more and more mothers decide that D-MER and Dementors are not comparable for the reason that D-MER does not suck your soul permentatly, and because D-MER can be beaten. I hope more mothers, instead of letting D-MER become their personal Dementors, go on to nurse their babies well past self-correction of D-MER.

International Breastfeeding Journal

Dysphoric milk ejection reflex: A case report by Alia Macrina Heise and Diane Wiessinger has been published by International Breastfeeding Journal, an open access, peer-reviewed online journal, and the article can be found at this link.

This paper has been a labor of love, almost 4 years have gone into writing this paper and getting it published. On my hard drive I have over 15 different drafts that we wrote and submitted to one journal. When we submitted it they wanted us to omit too much and change too much in order to publish it and so we started over with a different goal and with a different publication in mind. We then spent another year and a half with about 10 drafts in order to reach the final published draft. Diane and I hiked back and forth across the Finger Lakes region to work on it and logged many hours on Skype. Diane guided all of my dominate right brain experience into left-brain style of writing and processing. I challenge Diane in her understanding of the D-MER experience and I think she is the one non-D-MER mother who knows how horrible it actually is. Diane says we found each other out of luck. I say fate. Either way, we're grateful we found one another.

My hope for this paper would be that it allows for further professional credibility, a wave of interest at the research level and further validation to all the mothers with D-MER.

Not only do I credit and  thank the many D-MER mothers for their insights, without which D-MER might still be a problem with no starting point for cause or treatment, but I also give personal shout outs to my amazing husband who never wavered in his support and commitment of this project and endeavor. I also could not have done it without my third and last nursling, Elliotte. D-MER was an emotional wrenching experience, but I wouldn't be who I am today if it hadn't been for it.

How Can You Help?

-Translations
We have Dutch and German handouts now, and I have had volunteers for Italian, Spanish and French, but we are still waiting on them. If anyone is bilingual and has the translating skills, it would be great to get the handouts into as many languages as possible!

-Website Editing
Anybody who has any skill at picking out typos or a background in grammar and English is welcome to go through the site and email errors and typos that are found. It is nearly impossible for me to find them all, and let's face it, typos happen. But it's important that the site is professional, and typos aren't professional.

-Website Review
Anybody who has a back ground in web design or graphic arts can feel welcome to email about possible visual improvements to the website (or blog). I don't need a web designer (don't worry!) just need a trained creative eye to find possible improvements.

-Guest Blogging
Always looking for guest bloggers! A mother who has D-MER, a mom who has had D-MER, a mother who weaned because of D-MER and wants to share her perspective, a professional who has worked with a mother with D-MER....lots of possibilities here!

-Writers
Any writer, a freelance one or one who writes for parenting blogs, magazines, ect...D-MER has a lot of possibilities in this regards. I have been contacted by several writers interested in doing this. Even if it is just a local publication, D-MER is a new topic of interest and a well written article is likely to get picked up.

-Local Awareness Raising
Print out handouts to give to your OB, midwife, pediatrician and local IBCLC. Post a flyer on the bulletin board at your child's daycare or preschool, the library, parenting resource center or WIC office.

-Online awareness
Blog it, tweet it, facebook it. Post about it on your favorite message boards. Email you favorite big bloggers and ask them to write about it.

-World Wide Awareness
Write to Mothering Magazine and request an article be done on it, ask your breastfeeding support person if they would like to write a case study about you for The Journal of Human Lactation.

-Thesis Writers and Doctoral Candidates
Students! Please consider using D-MER as a subject for your research. We have one such student doing this in Russia. There are lots of areas of D-MER that can be covered in this regard.

If anyone has questions about any of these opportunities or wants more information, please contact me! info@d-mer.org

How D-MER Changed Me

I was 27 when I had my third child and experienced D-MER for the first time. I was a confident person. I was a doer, an overachiever and an organizer. I was a go-getter. I was a leader and I spoke my mind. I knew I was not everyone's "cup of tea" and that was OK with me. I had god amount natural awareness. I was in a pretty good place with these things. On the flip side I was a bit of a bull dozer, I thought the world would be better with more people like me and I didn't know how to appreciate the differences in people. I also didn't know how to really use my awareness for myself and to help me understand others.

Then I had my baby and I started experiencing D-MER. My severe despondency D-MER was no picnic. Though sometimes now that it is behind me I need to go back to some of my writings from when I was in the middle of it to remember exactly how incredibly excruciating it was. There is something else that helps me remember how bad it was also. The fact that it altered the way I look at my life. It changed the way I interpret emotions permanently, even after weaning. I have been re-programmed.

Because of my self awareness I knew I was different after D-MER, and that I had changed. But a lot had happened in my life in the past 4 years, not just D-MER, and I thought the changes stemmed from a lot of things that had taken place in 4 years. I realized though that there was a part of me, that doesn't belong. It didn't fit and it wasn't welcome. I set out to find out what that piece of me really was and where it came from. It didn't take long to put the pieces together and find out where is all started. I tracked it back to D-MER.

Everybody interprets their D-MER feelings differently. It is a personal experience. For many with severe D-MER, it takes balls to really articulate the ugly things you think and feel during a D-MER. I recently asked some D-MER moms to tell me what they wanted to think about when D-MER hit them and what they tried to think about instead.  I started the moms off with this:

"When I had D-MER I had severe despondency D-MER. I mostly translated the feelings to guilt and the feeling that I had made an unforgivable mistake. It caused self loathing and self hatred and I also experienced suicidal ideation. It caused me to be very over analytical about every detail in my life, hoping to eliminate all chance of regret from it. Diane W once wrote me an affirming statement to read while I nursed, but during a D-MER episode I could not even read, much less believe it. I only survived telling myself at every letdown the feelings were not mandated and spent a lot of time thinking about my baby instead of picking apart myself. But the effects of D-MER have lasted well beyond weaning in regards to how I interpret emotions and how I live my life trying to avoid that feeling of guilty regret."

I got responses like the following:

"When I had D-MER I always felt guilty and undeserving like I didn't deserve the love of my child or that I was a really awful disgusting person. It felt as though I had done something unforgivable in my life but I could never put my finger on or remember what it was. I don't think I could have read anything during D-MER either. All I could do was stare off into space and I barely noticed what was going on around me."

"When I breastfed I would feel this horrible feeling of dread, the only thing I could liken it to was the same feeling I got thinking about when I was raped as a teenager (an issue I've dealt with and doesn't effect my life in any way anymore). I thought it was issues to do with the actual feeding, worrying that it felt like I was abusing my child or something but actually that same dread appeared whenever milk would leak or through expressing so I realized it wasn't that. I'm scared of even trying with number four (due early August) but I will, I'm slowly learning more about it and learning to accept that I've done nothing wrong, the horrible feelings don't mean I'm a bad person and that bad experiences of the past are nothing to do with *this* feeling. I like learning about the physiological reasons causing this bad feeling, distraction seems to be a good option as the feeling doesn't last long (but does repeat with every let down) and I'm hopeful that if I can get through the early weeks and months it may be more manageable. I'm fine the rest of the time and I just need to focus on the fact that it isn't actually related to any past experiences or any guilt, it's just chemicals in my body. I have a tendency to overanalyse everything anyway so I just need to learn to relax and stop thinking so much!"

These three quotes are powerful reminders of how inward D-MER turns. Mothers self direct the feelings. I personally spent 30 months doing this self loathing/self picking/self analyzing to myself every time my milk let down. I did the math once, and figured out that I had an average of about 20 of these 2 minutes long episodes every day for 30 months. That's about 10, 840 D-MER's. That's a lot of reprogramming.

Until I learned that D-MER was hormonally manufactured, every D-MER felt real, as it does to all D-MER moms. That meant I took the time and energy to find out what it was that I was feeling so massively horrible about. I learned to pick apart the things that had already happened, looking for the bad in them, trying to figure out how to fix them. Everything was open to analyzation. No relationship or decision was safe from scrutiny. Once I learned D-MER was not because I had done anything, that it was going to happen no matter what, simply because of the hormonal cocktail rushing through my body, the way I coped changed a little bit. Suddenly I started being overly proactive. I became vigilant with my life because of it. I could not allow myself to fail, to make a mistake, to fall behind, or to misspeak. I had to be perfect. I could not allow any room for self analyzing during a D-MER, I had to be sure there was nothing there to feel badly about. That way when it happened I could be sure it was not because of me.

After D-MER self corrected it became not only a habit, but also an avoidance of ever wanting to feel such a feeling again. I wasn't going to give myself anything to beat myself up about. I never wanted to feel guilty, or unforgivable or undeserving for any reason....ever again.

As you can imagine, it's a rather exhausting way to live, seeing as perfection is an unattainable goal. It means that now, 4 years later, nothing I do is safe from my own scrutiny. I am more sensitive to the mistakes I do make, I spend unhealthy amount of time looking of my shoulder, making sure I haven't messed anything up. I over think relationships, I do not trust my interactions with others. I am over sensitive to constructive criticism. I am an anxious person in this regard. I try too hard. I worry. I do not trust. These points I genuinely do not welcome them in my life. However, I look at who I am as a whole now, with this as a part of me. I need to decide how much of it is not welcome and what's just really good growth that gets to stay. I know that I am a confident person, but now I don't always trust most of my more important relationships. I am a doer, but I think first about what I am doing now. I am still an overachiever and an organizer and a go-getter, but only once I have decided it's worth getting. I am still a leader, but I don't take on too much like before. I still speak my mind, but with more care. I know I am not everyone's "cup of tea" and that's still OK with me. I sometimes come across with intensity but I am no longer a bull dozer. I also know the world would is better with lots of different types of people. I know to appreciate the differences in people.

I am 31 now. There are things about me that I still planning on weeding out and there are new things I plan on keeping. Everyone changes, and if they are careful about it they have good control about which direction they change. D-MER, at the time,  left me with no choice in how to change. Perhaps with awareness and recognition it could have been different. But now it's time to go back and do some damage control.

I choose to nurse through D-MER and I have no regrets because of it. No, it's true, I am not who I was before D-MER but I would not be actively becoming the person I want to be had I gone without it.

Geographical Map of D-MER

A geographical map of D-MER is in progress. If your location (US state or country of residence) is not represented thus far, please leave a comment with that information so it can be added to the map! Make sure it is the location of where you live, not where you are from. This will help with awareness and to show how widespread it is, with women affected all over the world. The embedded map is below, zoom out or click on the link to see the full map. Thank you for your help with this project! PLEASE NOTE: for this post I can no longer accept location submissions from anonymous posters, for this project we need to verify you are a real person!! You do not need to give your town name though, just county or state.



View D-MER in a larger map

When to Wean

"Yet if a woman announced to her doctor, midway through a routine physical examination, that she took up smoking a few days earlier, the physician would make sure she understood the hazards, reasoning that now was the easiest time for her to change her mind. It is hypocritical and irresponsible to take a clear position on smoking and "let parents decide" about breastfeeding without first making sure of their information base. Life choices are always the individual's to make. That does not mean his or her information sources should be mute, nor that the parents who opt for bottlefeeding should be denied information that might prompt a different decision with a subsequent child." - from Watch Your Language! By Diane Wiessinger, MS, IBCLC

Going to muse a little bit on a touchy subject again: Weaning because of D-MER. Once again understand there is no "one size fits all" solution or answer to this sort of dilemma. But based on what I have encountered and seen so far, I do have a generalized opinion. This will be my last touchy post for awhile, we'll move on to nicer things next.

First a few disclaimers. I am a proponent of breastfeeding. I am not a breastfeeding "nazi" (and don't like the term). I do believe that formula is not plan B, but plan D according to the WHO guidelines. As a peer counselor with WIC, I am genuinely impressed and pleased with any attempt a mother makes at breastfeeding and believe it deserves recognition. I, personally, am a mother who breastfed for 2.5 years with severe despondency D-MER which included acts of self harm and suicidal ideation so I do not make the following statement lightly; I strongly feel that there on only a handful of reasons why a mother with D-MER should wean because of her D-MER. That being said, I do not judge the mothers who have weaned because of D-MER, I am just disappointed for them.

This is how I feel for all mothers who make feeding choices such as over-feeding with bottles, starting solids and formula feeding. It is not judgment I feel, but disappointed. Because I know if they had all the information, if they knew all the facts, that they would think twice. I did not always feel this way, I have been in lactation for 7 years but I did not always feel as strongly as I do now about the global importance of breastfeeding. It was not until I start formal studies for international certification that I found out the true damage these feeding practices do, even in a developed country.

Don't get me wrong, I was bound and determined at first to let me daughter self-wean, as my son did, and when faced with D-MER I had to look at my goals and consider reevaluating them. I did just that, instead of stating we were nursing until self-weaning, I set smaller goals. First 6 months, which was when gut closer happened and it was safe to introduce something else if needed. We made it that far, so I changed it to 12 months, the general "acceptable" age for weaning a child, even in the lactation community I would not be chastised for it. We made it that far, and we were making progress on D-MER investigation so that gave me more drive, drive enough to get me to 24 months when I noticed D-MER lessened. After that we made it until D-MER self corrected at 30 months, and continued to nurse until she was three and a half. I got a full year of D-MER free breastfeeding because of that decision. What a wonderful way to end!

So in my personal opinion, not that it matters, when is weaning appropriate and what other options does a mother have? At this time I feel like the following are justifiable weaning reasons when dealing with D-MER.

- A mother or her baby is allergic to her treatment options, and she has severe D-MER.
- A mother is being treated for PPD, the D-MER treatments are not compatible with her PPD meds and she has severe D-MER.
- A mother has tried several treatment options for her severe D-MER, none have them worked, and she can not cope with her D-MER without risk to herself or her baby.
-If a mother is in immediate danger of harming herself, her baby or someone else and does not have time for treatment options.

There is so much evidence based research out there that is telling us how severe the risks of formula are, this can't be denied anymore. If a mother decides she can not cope with her D-MER, but does not try treatment options first, and goes right to formula, she is doing herself and her baby a sad disservice. Having a small amount of an herb or a drug pass through breast milk is much safer and healthier than putting a baby onto an artificial formula. All options should be explored when a mother feels the need to wean because of D-MER, because formula is not plan B, it's plan D.

Hugs to all the D-MER mamas out there. You CAN do this!! Rock on!

Is D-MER the "Low Milk Supply of 2011"?

There was a blog post recently and one of the commenters spoke of how skeptical she was of D-MER and felt that it was going to be a condition that is like "the low milk supply of 2011". Meaning, she feels mothers will causally use D-MER as an excuse for weaning as many people do recently stating they can't breastfeed because they didn't have enough milk. This comment on the blog went as far as to imply D-MER was "created" and "fabricated" as an excuse for not breastfeeding.

I feel that it is alarmingly apparent on the D-MER.org website that we do not endorse weaning because of D-MER, so I do believe that this commenter made her comment without much true musing or thought, but it made me start thinking.

It is true, we are seeing more mothers than we are very comfortable with, weaning and naming D-MER as the cause. This wasn't the case in '08 and '09 when we first started finding mothers with D-MER who were breastfeeding. But when we first found our sample of D-MER mothers for surveying it was noted that the vast majority of these mothers who were nursing through D-MER, when they didn't even know what was wrong, were not mainstream mothers. They were "do or die" types, who were going to breastfeed even if it killed them (which, before misinformation gets out there, D-MER does not do, need I even say it? Apparently for some sensationalist bloggers, I do.)

Back to the point, now that D-MER information is more readily available to the general public is means that all sorts, kinds and types of mothers with D-MER are more likely to find the information. This means not only the "do or die" nursers are finding the information but the "I think I will give it a try" nursers are too.

It can't be argued that they are women out there who feel non-committal to breastfeeding. They are willing to give it a try, or feel obligated to try because that's what all "good" mothers do. But many of these mothers are looking, perhaps even just subconsciously, for a way out and a reason to stop. Because of societal pressures unfortunately quitting "just because I didn't want to breastfeed" doesn't cut it for mothers in this position. It is only considered appropriate to give up if you have a justified, perhaps even medical reason, to quit. I do not state this by my standards, but by the message I feel is being given to the mothers in our country in general.

In the past these excuses to quit have not been hard to come by. Reasons such as, the baby didn't like to breastfeed, he was allergic to my milk, he was sensitive to something in my diet, I couldn't produce enough milk, my milk dried up, ect were readily available for mothers to fall back on. Of course not all mothers who use these excuses are looking for a way out. Often even though they really wanted to breastfeed they simply didn't have the needed support and so these were there fall back statements when they gave up. But for others, they are just that, an excuse to give it.

How does D-MER fit into all this? D-MER is going to be used, and probably already is used, by some mothers as this desired excuse to wean. Before anyone goes all judgmental on me, I am not making broad generalized statements that need to be taking personally. I am just speaking a hard truth about the situation.

At first I was really frustrated that D-MER was being used this way. I felt that women who were doing this were going to drag D-MER through the dirt and give it a bad name. Lactivists everywhere will be upset that D-MER was ever described and defined. I also never wanted to give women a reason to feel justified to give up, the reason I pressed on was to encourage mothers to go on. Because of this "justified reason to give up" propaganda we have gotten the sense that this is one reason Mothering Magazine has not published anything that has been submitted on D-MER. They have never made a statement about it, but some of their actions, such as locking threads about D-MER on their message board has given us some impressions. Someone mused to me once that someday there could be an artificially feeding formula marketed to mothers with D-MER (make the nightmares stop!!)

But then I realized it's OK, it's not OK that women are weaning, but it's OK that I have done so much work with D-MER. I had moments of, "why did I even bother, it wasn't suppose to go like this, babies aren't getting breast milk because of my role in D-MER becoming a recognized condition, ect, ect." But these mothers who wean may have weaned anyway, for hundreds of other reasons. They didn't wean because D-MER became a recognized condition. But there are masses of mothers who were encouraged and continued on breastfeeding because D-MER is a recognized condition. If it wasn't, we probably would have lost them too. So in the end, I have to ask myself, are more women breastfeeding because of d-mer.org or less? The answer is overwhelming, more. That's all that really matters.

Off Topic: IBCLC Certification Exam

I need a place to post my resources for preparing from the July 2011's IBCLC Certification Exam, so this will have to be my venue, even though it's not D-MER specific.

From IBLCE I benefited from the following information:
Information on qualification
The exam blueprint
The suggested resource list from IBLCE

The books I am using are:
Breastfeeding Answers Made Simple by Nancy Mohrbacher
The Breastfeeding Atlas by Kay Hoover and Barbara Wilson Clay
Comprehensive Lactation Consultant Exam Review by Linda Smith

Online I an utilizing:
Health-E Learning's lactation study courses
Kay Hoover and Barbara Wilson Clay's BreastfeedingMaterials.com Training online photo quizzes
The online tests from the Comprehensive Lactation Consultant Exam Review by Linda Smith
The IBCLC2B Yahoo group
The 2011 IBCLC Candidates facebook group
Test Taking Strategies, Keys for Lactation Exam Success by Marie Biancuzzo
I watched free lectures from Heath-E Learning

Other things I am doing:
I made a extensive set of flashcards (will post a downloadable version soon)
I took Linda's Smith prep course, that was offered in a city near me
Found a study-buddy and met with her about 3-4 times a month for 2-3 hours at a time

Question of the Day 2

Question:

How do you distinguish between people with severe anxiety or depression & D-MER? I could see how there could be an overlap.

Answer:

People with severe anxiety and depression have constant, or at least longer stretches, of mood alteration. They feel anxious or depressed a lot of the time and it is not tied to milk release. 

D-MER has a very distinctive "MO" of a brief feeling of dysphoric mood before the milk lets down. It starts about 30-60 seconds before a mother feels a tingle in her breasts or has leaking from her nipples. It ends within another 60 seconds or so, and it is like it never happened until the next milk release. It is never any other time other than before and during a milk release. A mother knows a milk release is going to come because of this distinguishable wave. She can't stop it from happening, nor can she control it in any other way. It is very unique and distinctive it's presentation. Unmistakable to a mother who has experienced it.  Even to a mother who has an anxiety or depression problem with D-MER (not very common) the wave of D-MER is distinctively different.

Question of the Day

I am going to try out a new segment called "Question of the Day". These questions come from posts by D-MER mothers on message boards. Sometimes these questions as answered well by other mothers on message boards, sometimes mis information is given and sometimes the mother gets no answers. This seemed like a good way to help get some questions answered and give clarification.

Today's question:

 If I had D-MER with baby one am I likely to get D-Mer with baby two? I'm assuming I will. Also, has anyone mixed bottle feeding i.e. formula and pumped milk (when they had the strength) with D-MER and how did you find it? Was it better than exclusive breastfeeding? I find if I breastfed only once/twice a day I handled things much better so still considering expressing a little each day with Baby 2 rather then breastfeeding exclusive again because that would just be too much.

Answer:
Right now the pattern we have seen with mothers is that once they have had D-MER with one baby, they have it with subsequent babies. It seems whatever "breakdown" that is happening in the body may happen over time and once a mother succumbs to it, the damage has been done. But it is important to remember that though we don't know the cause (i.e. how to prevent it) at this point we have pinpointed the mechanism closely enough that D-MER is treatable. Any "risks" of treatment are much safer than the risks of weaning.

In regards to the second part of your question, the severity of D-MER seems to have a least a weak link to milk supply. So, theoretically, the higher your milk supply the worse D-MER. This is NOT saying that high milk supplies cause D-MER, so please do not misunderstand me. But this is a hypothesis and is nor more than a tread we have seen in mothers who have D-MER. Because of this possible connection some mothers find that combination feeding is a more comfortable alternative. Though it's not our personal viewpoints or suggestion by any means, we work on respecting each mother's choices, especially when dealing with something hard to understand like D-MER. The reason combination feeding appears to help lesser the severity of a mother's D-MER is because by combination feeding you reduce your supply.

You mention pumping and bottle feeding and it's important to note that many moms find breastfeeding to be more comfortable through D-MER than they do pumping, especially once they can mindfully release themselves from the self analyzing that happens during a D-MER episode. Also the relationship at the breast is vitally important to an infant. So my hope with a mother who wants to combination feed would that she puts the baby to the breast some of the time (for example for night feedings when mother's nurse in bed with their baby and sleep through D-MER) and gives the formula part of the time.

I hope this helps answer other people's questions too!

International Acceptance of D-MER

I have had more inquiries about speaking about D-MER in international settings, that I have had for anything being held in the US.

I just finished a teleconference for Le Leche League of Italia this past week. After I finished it and I was being congratulate by my WIC supervisor on a job well done and receiving my husband's glowing comment that I was officially an international speaker, I started musing over the fact that I was speaking in Italy before I was anywhere in the US. Ireland and Australia have shown interest in having me speak as well, but not even events in my home state have seriously sought me out for presentations.

For example, something that happened in 2009. Living in New York State, not far from a prominent published lactation consultant, there was the annual conference for a large lactation organization, taking place not far away. This particular lactation guru was scheduled to speak and thought it would be a great venue for me to give a presentation as well. The organization said yes, they would have me. I was willing to do it for free, I was inexperienced and had very little travel, so it was well worth the effort on my part and it was a small risk on their part. But when it came down to it, they never actually scheduled me or contacted me. Perhaps saying no to published lactations authors is a hard thing to do, but apparently, even for a free presentation with a prominent recommendation, D-MER didn't make the cut.

This led me back to the time when a popular natural mothering message board decided to lock all the threads on D-MER so they would become inactive and buried.

And then blogs in the US start running headlines such as "Can Milk Release Cause Depression in Breastfeeding Mothers?"

All of this causes me to wonder...does America have a problem with D-MER?

It is true that many other foreign countries are much more progressive when it comes to lactation. But is it this progression and open mindedness that causes them to receive information on D-MER better? Why do they receive it better? Is it because they are not afraid the D-MER will tarnish the good name of "breastfeeding"? Is it because they are eager to grow in the knowledge of lactation? Is it because they don't see as D-MER as a reason for letting breastfeeding being compromised?

One person told me that it could be there is concern that formula companies will want to use D-MER as a reason for promoting formula. You can see the package in your mind, "The new formula for mother's with D-MER, because you shouldn't sacrifice your mental health for the sake of breastfeeding" or some such bull. This is a chance. But if D-MER wasn't there for that use, they would find something else. They already use it for babies who are fussy because of foods in a mother's diet, they use it to make babies sleep longer than breastfed babies....they could find many other marketing techniques that demean breastfeeding. D-MER has not created an opportunity that they didn't have before.

As a country we do try very hard to make breastfeeding look picturesque and perfect. We have built it up so that more mothers will do it, at least that was the idea. Breast is Best and other such campaigns have glorified breast milk without making formula look like anything less than acceptable. Are we afraid to talk about D-MER for this reason? Could it break down breastfeeding's good image and give mother's pause to consider alternative feeding methods?

If any of these scenarios are possible in the US and if they have anything to do with the lack of national awareness and acceptance of D-MER than it begs the question, why do international countries seem to be ahead of the game in this arena?

D-MER = Clinical Depression?

It is pretty clear on the D-MER.org website that D-MER is not a postpartum mood disorder. This seems to be a better know fact now, vs a largely misunderstood one as it was before. But as D-MER awareness becomes more wide spread we see more and more people taking the information on the website and rewriting it out of context, or with vague impressions that include errors and other such problems.

When this happens on a general message board, I don't fault the mother who posted. She's just writing what she read quickly and regurgitating it in the fuzzy postpartum left brain way new moms do.

But anybody that is writing for a well know publication or blog ought to get it right. Besides, these are the people that mothers listen to. If it's on the blog, it must be true. This is why when somebody is writing about D-MER I really love it when they come to me as a "fact checker" of sorts. It's really easy to misunderstand something so complicated.

But when the writer doesn't read carefully, or they make assumptions or they don't check their information, things like this happen:

Heise noticed a connection between her milk letdown (ejection reflex) and the onset of sad and anxious feelings. The condition made it hard for Heise to breastfeed, which is bad enough. Yet it also seemed to be a gateway for even more serious problems such as depression.


1. This author never contacted me, and yet he does use my name in a casual manner throughout the article as if he had.
2. I didn't have level two D-MER, I had severe level one, meaning I never felt anxious before an MER.
Lastly,
3. Where did the idea of D-MER being a gateway for more serious problems like depression come from?

As far as I can tell this is the first article that stated this particular untrue (or unproven) fact. Also, NO WHERE on D-MER.org do we talk about D-MER putting a mom at risk for greater anything. We just don't know.

Since that was the first time I had seen this particular misconception I let it roll off my back. But just recently a different blog wrote a mini-piece that stated this:

For many women, it can be so emotionally debilitating that it leads them to stop nursing or even to develop full-blown clinical depression.

So for final clarification. It is has not been found, nor even SEEN that D-MER puts mothers a greater risk for anything. It is possible for mothers to have PPD in conjunction with D-MER but she has PPD because she had a baby, not because she has D-MER and she has D-MER because of a dopamine problem, not because she has PPD. We feel very confident that they are unrelated. Most mother's with D-MER have no mood disorder, or history of mood disorder and they don't end up with a mood disorder. Lastly, we have never had a D-MER mother report to us that D-MER gave her clinical depression.

Thanks for letting me clarify!

Photos Needed

I need photos of mothers with D-MER with their babies, for a project entitled "The Faces of D-MER". Please email to aliaheise@hotmail.com or post on the D-MER facebook page. Thanks!!

Now Accepting Guest Blog Posts

Please email info@d-mer.org if you would like to be a guest blogger. Email with the topic of your post and the date you plan on having it ready for. We simply ask that it be a unique D-MER entry, not one previously posted on another blog. Thanks!

Handouts Need Tranlastion

The D-MER handouts that are on our website www.d-mer.org have been translated into Dutch and will be uploaded this week. It is possible we have someone doing a further translation for us into Italian. If there are any breastfeeding professionals who are bi-lingual ad motivated to help with the spread of information for D-MER, please contact us at info@d-mer.org to talk about volunteering your time to translate the handouts into another language for us!

D-MER.org in Financial Crisis!

D-MER.org is not receiving any financial help. Despite all of the mothers routinely posting and emailing their thanksgiving for d-mer.org and the information it provides, d-mer.org has never received one penny in financial aid or donations. The costs for keep the site running are mounting and they are and always have coming out of on person's meager pocket. If D-MER.org continues not receiving any donations it will not be able to say running.

Please, if D-MER.org is important to you, please consider even a 1 or 5 dollar donation for site costs. Every little bit helps.

For most women, if it wasn't for this site presence they and D-MER would still be in the dark.

Thank you.

DONA Article

Here is a link to an article on D-MER in the latest issue of DONA International.

Prevalence of D-MER

Many people have asked about the prevelance of D-MER. We have not had a extremely practical or 100% unbiased method of collecting this in an extremely accurate manner. But we did post on 10 breastfeeding and parenting forums with a generic request about a breastfeeding poll. Readers we simply told there was a one questions survey about milk ejection reflex and if they had breastfed for at least three weeks could that please follow the link. This helped limit the number of mothers "self selecting" based on having D-MER. The mothers who went to the survey initially did not know it was about D-MER. At the survey they were given a brief definition of D-MER, a link to the d-mer.org website for if they needed more information and a single yes or no answer question as to whether they have or had suffered from D-MER.

We had over 350 women participate in the one week the poll was open and throughout the 7 days the "positive" D-MER responses hovered around 8-12% finally settling at an even 10% when the survey closed.

We feel this is very significant. This means out of breastfeeding mothers hanging out on breastfeeding forums 10% of them experience it. I expect this would be were the highest percentage of D-MER mothers would be found. These are mothers who have or are continuing to breastfeed through a challenge and perhaps are continually looking for moral support, even if they thought they were alone in there D-MER situation. The percentage does not include though the mothers that tried breastfeeding and quickly weaned because of it, or the mothers who may be predisposed to D-MER but never tried breastfeeding at all.

All in all we feel surprised yet confident in our 10% number, knowing that it could be higher, but over all, looking at all postpartum women or breastfeeding women, it wouldn't be any lower then 10%.

Some people think we are raising an unnecessary ruckus about D-MER. They say it isn't a prevalent as the website makes it seem and that it does not need recognition. Some have gone as far to say it is just another hormonal flux, no different then PMS. I am sure those of you with D-MER have a hard time agreeing with this.

As far as the need for D-MER to be recognized Diane Wiessinger made a lovely point in regards to why D-MER should be in breastfeeding literature. She pointed out the the occurrence of Sheehan's Syndrome (and it's effect on breastfeeding) is so low that she has only come across one case of it in her 25-ish years of very successful practice, and yet this is a condition that is addressed in all the breastfeeding professional's literature. We did the math and figured out that if D-MER has a prevelance of 10% in breastfeeding mothers than Diane has had roughly 200 D-MER mothers come across her path in private practice/LLL work. Surly this is significant.

This also shows the need for it to be recognized in literature for mothers. There are sure to be vast numbers of women who weaned because of D-MER who could have continued, for at least a time, if they were able to understand their feelings.

Also at least 85% of the mothers we have heard from with D-MER (now well over at least 500, without a formal registry we have been unable to keep track) that thought they were "alone" or "the only one." This assumption (based on the fact nobody ever wrote about it or widely talked about it) caused them to hold their tongue about it even further. If this is something that becomes common knowledge and women can speak freely about it, mothers are going to be able to cope with D-MER better or if they choose, find treatment faster.

Speaking of a formal registry, that is one reason the facebook group for women with D-MER is so important. Having a registry of mothers with D-MER helps tremendously in showing the prevelance of it and right now this group is our only orginized way to do that. it does not mean you are going to be contacted by anyone or that you are signing up for research or anything like that! So take a minute to join the group- stand up and be counted!

We having been wildly tossing around theories as to "who why and how" regarding D-MER and have some fun anthropological theories that I will post about soon, as well as news about a highly effective natural treatment, so look for more posts in the coming weeks.

Breastfeeding Aversion vs. D-MER

The Aussie's have given a name to the feeling some women get when they nurse while they are pregnancy. Breastfeeding Aversion is what it's referred to. Some women get a restless, creepy crawly, antsy-ness about them when they nurse an older baby or toddler while pregnant. Some say it is worse the older the nursling is. Many think it's nature's way of saying "time to wean this baby! Got another one coming!"

When "news" of D-MER hit Australia it seems many moms thought breastfeeding aversion and D-MER were one in the same. Why did the Aussie's feel this way and no American mom ever made the comparison....? I assume it must be because Australia's moms breastfeed through pregnancy a lot more often then we do here, or maybe it was just because one person thought they were one in the same (breastfeeding aversion and D-MER) and so many more became misinformed...who knows, but lets talk about it.

We looked into the connection when comparisons between the two were first made. We interviewed moms who had nursed through pregnancy and compared their experience to the experiences and accounts of mothers with D-MER. We then made the following statement on the site:

"We feel D-MER and "breastfeeding aversion" aren't the same, but we will go as far as to say they may be related. We are pursuing further investigation of this."

What we couldn't find though was a mom who had nursed through a pregnancy with breastfeeding aversion (with no prior D-MER history) and then developed D-MER with her following lactation. So we didn't really have anybody to compare the two having had experienced them both herself. Until now!

There was a recent blog post at Homebirth:a Midwife Mutiny, it is the account of a women who had D-MER with her second baby, but her story starts with her experience with breastfeeding aversion while nursing her first baby, part way through the pregnancy. She doesn't actually compare the two in her post but after someone addressing the issue in a question she responds with an answer, and it seems that perhaps breastfeeding aversion and D-MER are so different that it didn't even occur to her to really compare them in her blog post.

Her response below:
"re: breastfeeding aversion vs d-mer: they were actually quite different. While I was pregnant, when my son wanted to feed I dreaded having to do it, felt almost repulsed the whole time, it made my skin crawl, I felt 'wrong' and it lasted during the whole feed, sometimes getting worse during the feed. (lots of women breastfeed through pregnancy fine btw) With d-mer it's not a repulsion, it's more of a deep, sad, dark feeling but it's over really quickly. I don't dread feeding, I just have a feeling of dread before the let down. I still enjoy breastfeeding, whereas whilst pregnant I did it because I knew it was good for my son and he enjoyed it. I felt the aversion was a good enough reason to wean my son, but I don't feel d-mer is bad enough for me to need to wean this baby.

Thank You

D-MER is going to be an ongoing project for me. There is still so much to do, be learned and fine tuned. There is a massive amount of awareness to be raised through writing, speaking and networking. But I was taking a moment to really realize how far we have come in such a short time and I felt thankful to so many people and I wanted to share about it.

Thank you to my 100% supportive husband. Not only has he nurtured me through D-MER and offered so much understanding and patience, but he has not balked at the uncompensated hundred of hours and hundreds of dollars that I have poured into D-MER and its greater cause, even though it has taken me away from my family and home responsibilities.

Thank you to wonderful wonderful "D." She has not minded that I used her at times for her name and status in order to get answers from the better known professionals. She never doubted me even when at times I doubted myself. She countless time talked me away from "the ledge" when I was ready to give up or blow a gasket out of general frustration or discouragement. She poured her emotion into my experiencing, resonating with my pain and celebrating with me when it was lifted. She used her amazing counseling skills every minute of the way. She herself has pour hundreds of hours into D-MER and it's greater cause and humbly continues to try and give me all the "credit" for the work that has been done, even though without her, it never would have come this far.

Thank you to "N" for giving telling us to stop looking at oxytocin and for giving us the word dopamine, even if at first she thought I should just cognitively readjust. But then again, so did most people, and all and all she came around, saw it was physiological and gave us dopamine, and I am ever thankful for that.

Thank you to "dooney" on MDC for having the courage to post the thread "only when nursing" in the PPD forum. If I hadn't opened that post, none of this would have come to fruition. I wish I had been able to get a hold of her personally to thank her, but we never did get in touch. I always wondered how things worked out for her.

Thank you to my dad for answering all the medical jargon and terminology questions he could for me, even though he didn't have all the answers, he's still the smartest man I know.

Thank you to my palm pilot for crashing on April 7th 3008. If that hadn't happened I would not have stumbled upon the web page that convinced me to call D and ask for her help.

Thank you to my oldest two children for not feeling resentful for the hours I have spent on the computer immersed in research. Especially thank you to my older daughter, who understands D-MER just enough to say "Mommy, I am sorry you feel sad when your feed Ellie" and who understands that I am helping lots of other mommies and that that is important work.

Thank you to all the mamas of TBW and MDC for their active parts in the D-MER threads. They provided valuable quotes and information. They participated in the earliest research and spoke of their personal experiences with D-MER when nobody else was.

Thank you to my mum who never once doubted what I said to her about my feelings with D-MER, for supporting me in my work of bringing D-MER into the light and for acknowledging how important it all was. Thank you for reminding me, when it got thankless and time consuming, of how many countless mothers I was really helping. Really most of all, and the silliest of all really, thank you for not watching me when I nursed while we were together, for not watching my face for flickers of negative emotions, and for rambling on in conversation to keep me distracted and to keep me from having to form a coherent thought in the midst of D-MER....doing this all out of instinct for what I needed.

Thank you to my little baby girl, for seeing me through all of this. You were my perfect homebirthed baby, with whom I expected to also have a perfect breastfeeding experience and relationship with. You will never fully understand the impact that breastfeeding you had on the field of lactation. I feel like I missed out on the most important times of your first year of life. You are turning a year old this week and I have nursed you more than 4,927 times since the day you were born. I have spent at least 410 hours of that precious first year in a state of D-MER, loving you every minute of it, but doing my best to pretend you weren't even there. It wasn't fair. To either of us. It wasn't what I wanted for you and it wasn't what I wanted, planned or expected for us. But we have persevered through this seemingly never ending battled of emotional warfare. Now I will spend the next year or more breastfeeding you day in and day out, but this year will be different, this year I will look into your eyes, I will love having you in my arms, I will feel good when I nurse you. Because baby, you and I, we cured D-MER.

Mechanism of D-MER Found!

Dysphoric Milk Ejection Reflex is physiological. Meaning that it is hormones/chemicals in the body, not past experience or repressed memories, that are causing it.

Our theory, that follows, is based on our investigation and trial treatments, as well as input from the investigation team as a whole with a varying medical background. We do know that D-MER is dopamine mediated. Everything above and beyond that is a very educated guess.

In order for prolactin (what makes breast milk) to increase, dopamine must drop because dopamine controls the secretion of prolactin. When a milk release is triggered (nipple stimulation, conditioned reflex or over fullness of the breast) it causes an immediate drop in dopamine levels in order to let prolactin slowly increase. In a mother with D-MER, when dopamine lowers it is falling too wide, or too low or too fast in central nervous system. The dopamine receptors present in the pleasure center of the brain are suppose to receive dopamine and when dopamine drops inappropriately in a mother with D-MER the receptors are deprived of the dopamine they need and as a result cause the negative emotions.

Thus far, treatments that increase dopamine levels in a mother treat D-MER effectively.

The next step will be a double blind study with D-MER mothers, prescription treatments and placebos.

Oxytocin and prolactin appear to be completely unresponsable for the negative emotional response to milk letdown that D-MER mothers have. In other words they are "just a long for the ride."

More info can be found at the *just* updated www.d-mer.org

Facebook Group: 500 or More with D-MER

JOIN HERE

This is a group on facebook to show the magnitude of mothers effected by D-MER. All you have to do is join. It doesn't have to be for chatting or connecting (but it can be) most importantly you just put your name there. Show yourself, stand up and be counted!!!

As My D-MER Changes

I haven't done much personal journaling/writing about what Dysphoric Milk Ejection Reflex feels like for me, except my first post on the first forum post that I found almost a year ago now. So I decided to write an updated description as my D-MER has changed, both becuase my baby is older and becuase I know it's D-MER. I will post both for comparison. There was defiantly another "version" of D-MER in between these two that I never thought to write about and I don't think I could go back to write about it accurately enough.

On 8/9/07 when my baby was just 2 days shy of a month old I wrote this:

I had been scanning this forum (ppd forum at MDC) for a couple weeks looking for something to jump out at me, to explain how I had been feeling. I couldn’t put my finger on it. I assumed it was postpartum related, but I wouldn’t have called it depression. I originally didn’t click on this thread, because I had “moments” when I wasn’t nursing.

I decided to read the thread a few days ago and wished I had sooner!

I realized that 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 LETDOWN specifically. In fact, I can tell a letdown is coming because of how I SUDDENLY feel. This happens several times during a feeding, but those times are not as intense as the emotional feelings I get in between feedings during a spontaneous letdown. 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.

In between feedings it is much worse. I can tell I am about to letdown (about 60-90 seconds after it hits) because of how I feel and it’s a horrid feeling lasting about 2 minutes.

So to explain how I feel: 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. Turns out there was nothing, it was just that same sinking feeling in the pit of my stomach that makes me loose my appetite that I had experienced in the past for these other reasons.

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 4 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’s just sometimes doesn’t sound good at the moment, or after I eat I momentarily wished I hadn’t. I think because the sensation lasts only moments now, where as before it was lingering.

My biggest thoughts right now are about NAMING this. If there are so many of us and it seems to be fairly unheard of, It ought to have a name. Also as a breastfeeding counselor I would take comfort in knowing what this emotional issue connected to breastfeeding IS.

And here I am, 6/25/08 and my baby is 2 weeks and 2 days shy of one year of age:

What I experience, now fully educated about what it is I am experiencing, also with an older baby, is a feeling of disgust, disgust with D-MER mostly, sometimes disgust directed at myself/my life. But mostly I feel frustration, with D-MER, that I can't control it or stop it or change it or figure it out fast enough. I feel confusion also. It's a confusion of "why am I feeling this way? There is nothing to make me feel this way. Why can't I will this away? At times when I feel weaker, times I can't make it about the D-MER, I make it about me it's a feeling of being overwhelmed. It makes me think about life in general: "it's all to too big, it's all too much, I might as well quit now because I am never going to be able to do this." I generally just want to curl up and disappear either way. I want to quit, I feel like I have failed at everything. It makes me thud my head against the wall, almost in total surrender to what I can't control. I often just think to myself "yuck yuck yuck yuck" until it's done. I try to sigh and breath and sigh and breath it away, but then again, nothing works, their are not my feelings to control, I just have to ride it out anyway I can.

Pseudoephedrine

I am taking this section out of the website and moving it to the blog becuase pseudoephedrine (PSE) is being mentioned for the sake of headway in investigation of D-MER, it is not a satisfactory or safe longterm treatment. This makes it blog worthy, but not website worthy.

So basically I am saying: "this is interesting, but don't try it"

It needs a word of caution first and foremost. It can detrimentally effect milk supply in some mothers. Dr. Thomas Hale, author of Medications and Mother's Milk is very nervous about its use in breastfeeding mothers because of the potential to drop supply in a way that doesn't respond to just stepped up stimulation. Also it is apparent that mothers in late-stage lactation may be more sensitive to pseudoephedrine and have greater loss in milk production. The study can be read here. Though not all mothers respond to it in that way. It is being mentioned on this site becuase PSE was tested and found affective in D-MER treatment with a particular does and when other dopamine effecting properties were not used in conjunction. In testing D-MER rebounded, in a more severe "whiplash" manner, within 12 hour of stopping the medication. We feel that the effectiveness of PSE on D-MER is due to PSE's affect on dopamine receptors. PSE is NOT recommended for chronic use becuase of it's stimulant properties, more can be read about that here. Because of this, and becuase of the probable severe rebound of D-MER, it is not satisfactory treatment, but as it is the only thing that has successfully treated D-MER 100%, it bears mentioning. We are looking hard and fast for a sustainable solution based on this new finding.

Other Milk Release Phenomenons

So D-MER is a letdown (milk release) phenomenon. While waiting for us to figure out the cause and treatment for D-MER, let's look at other "weird" milk release phenomenons. Because it turns out there are a bunch of them. These are things that happen just with milk release and then go away, just like D-MER.

Warm, Fuzzy, Sleepy and Dizzy- OK not "weird" but I include it becuase a surprising amount of moms don't feel this. D-MER moms obviously don't, but there are bunches of moms that just feel nothing, not rosy but not dark either. But, this isn't an uncomfortable symptom as such and we can thank oxytocin for this one, not blame it.

Thirst- This is the most well known, often called "letdown thirst." This is the one that is most popular and some mothers think it is connected to D-MER becuase it goes along with their emotional symptoms, when in fact it is a separate physical component. Lots of mothers without D-MER get letdown thirst too. This one is blamed on either vasopressin (the anti diuretic hormone that is oxytocin's sister hormone) or prolactin is also accused sometimes.

Headaches- Fairly well documented. The ABA talks about it, as does Kellymom. These are vaguely blamed on hormones and oxytocin.

Nausea-Kellymom has a page just for this, and the ABA mentions it too. This one gets blamed on a whole slew of things: medications particularly anti-depressant medication; excessive fluid intake; not enough fluid intake; low blood sugar: low blood pressure; thrush in gastrointestinal tract; low grade urinary tract infection; eating disorder; tiredness; abuse memories; hunger. I hate it when things are vaguely blamed on abuse. It's the easy out. Can't research it well becuase of "unremembered abuse" so they can just play that card and be done with you. Do I sound resentful? Well, I am not, I only sound it becuase I spent several months establishing that D-MER was not psychological. Again many mothers think nausea equals D-MER becuase D-MER mothers explain some kind of stomach malaise with letdown, but this is actually different. Just plain neasua isn't D-MER, but a D-MER mom can have both.

Itching- Guess what they blame? No, not abuse this time! Oxytocin release! Or increased blood flow. The itching is usually in the underarm area.

Hives-I came across the recount of a woman who said she broke out in hives when her milk released and then had the hives disappear once the feed was completed. After googling it, it seems there are handfuls of others out there too. I don't see anyone blame it on anything though.

Fever- I recently heard another story of a woman that spiked a 104 degree fever when her milk released only to have the fever disappear when she was finished nursing. This one I didn't find anything else on when I googled. Too many results concerning fever and mastitis while breastfeeding vs. fever with letdown when there is no infection.

Anyone else have any others?

Poor oxytocin gets a bad wrap over all. Here is our lover hormone and we blame it on all sorts of awful things when connected to milk release. I am starting to think more and more that oxytocin acts as the "messenger" (becuase it is released in such a surge with letdown) but I suspect, not only in the case of D-MER, that many other hormones and chemicals are coming into play with these symptoms and all we have is oxytocin to blame them on, becuase we know it's present with letdown, everything else is invisible.

Also interesting that the physiological explanations for all of these problems is vague and rather under researched. Maybe once the mechanism of D-MER is discovered it will shed a light on some of the other separate physical problems that women experience in connection to letdown. I'd like to think there will be more of a push for continued research on something that makes some women feel suicidal upon milk release then there has been for some of these other physical symptoms that perhaps seem "easier to deal with."

Blog It Mamas!

D-MER has gotten a lot of extra attention recently due to just a few d-mer mamas blogging about it. So if you have a blog and can spare a post or a side bar for d-mer.org, that'd be great! It's getting the word out there and mothers are finding out they are not alone!

Name Change

D-MER (once depressive milk ejection) is now being re-named to Dysphoric Milk Ejection Reflex.

Dysphoria is generally characterized as an unpleasant or uncomfortable mood, such as sadness, depressed mood, anxiety, irritability, or restlessness.

This better represents the three spectrums of D-MER, the depressive spectrum, the anxiety spectrum and the anger spectrum. More can be read about the three spectrums on the new website due to launch by July 1st.

The name D-MER is spreading fast and we are implementing the new change before it becomes a common term among mothers and professionals.

Fortunately we get to keep the "D" in D-MER!!

View Survey Results!

I can now share survey results without revealing private information or the comments made by the participants, so if you include your email address when you take the survey, I will email you a link so you can see what the collective data is saying as a whole!

If you have never taken the online survey, find the survey to take here

Call for D-MER Photos

I am sure most of you are familiar with the series of D-MER photos that were taken of me to express what D-MER feels like.

I am finishing up my PowerPoint presentation for the speaking series I plan on doing about D-MER and I really could use some more photos like those, of OTHER moms (otherwise it kind of looks like I am the only one who has D-MER!!) These would only be used in the presentation, not on the website unless you wish.

Photos expressing anger (don't have any of those yet) sadness, anxiety, guilt....you know the feelings, I don't have to tell you!

If any of you are up to the challenge I would be willing to present you with a gift from the D-MER awareness store (item of your choice up to $5) as a thank you for this very special photo you provide me with. I know it can be a hard thing to try and capture on film...I have been there!

If you are interested, please email, alia@rochester.rr.com

Thanks!

Sneak Peak at New Web Site for Survey Takers!

If you are a D-MER mother and take the all new online survey found here then after clicking the submit button at the end of the 15 minutes questionnaire you will be taken to all the new d-mer.org site currently hosted under a temporary domain name. It is up and running but won't be launched until the last few typos are fixed and the rest of the content is edited by the remainder of the research team. If you want a sneak peak then take our survey and help with research too!

It doesn't matter if you completed the previous survey from the Word document, this one is new and revised and collects digital data so your responses are just as, if not MORE, important then before!! If you are or were a mother with D-MER, we want to hear from you!!!

Dopamine

Giving something new a little look: dopamine. When I started to think more about some people’s dysphoric reaction (an unpleasant or uncomfortable mood, such as sadness (depressed mood), anxiety, irritability, or restlessness) to metoclopramide (reglan) and how reminiscent it feels in comparison to some people’s experience with D-MER (mine included when using the sepia and experiments with oxytocin spray) and considering metoclopramide is also used as a galactagogue, I investigated metoclopramide and it’s mechanisms more.

Metoclopramide’s general mechanism is to block dopamine receptors, it’s a dopamine antagonist. When someone has a bad reaction to metoclopramide it can cause dysphoria, including suicidal ideation. This is (we think but need conformation) because of the person’s reaction to lack of dopamine, or because the metoclopramide is blocking too many receptors. It is important to note that many mothers with D-MER report suicidal ideation with D-MER, myself included.

When metoclopramide is used in lactation, as a milk increaser, it is used because dopamine inhibits prolactin production. So by using metoclopramide, one will block the dopamine receptors, reducing the amount of dopamine that is in the body that is inhibiting prolactin secretion. Here is a quote, “Dopamine is the primary neuroendocrine inhibitor of the secretion of prolactin from the anterior pituitary gland. Dopamine produced by neurons in the arcuate nucleus of the hypothalamus is secreted into the hypothalamo-hypophysial blood vessels of the median eminence, which supply the pituitary gland. The lactotrope cells that produce prolactin, in the absence of dopamine, secrete prolactin continuously; dopamine inhibits this secretion. Thus, in the context of regulating prolactin secretion, dopamine is occasionally called prolactin-inhibiting factor (PIF), prolactin-inhibiting hormone (PIH), or prolactostatin. Prolactin also seems to inhibit dopamine release, such as after orgasm, and is chiefly responsible for the refractory period.” Of course since dopamine is used as a drug within lactation, this makes gathering information via the internet about a lactating mother’s natural production of dopamine difficult.

Dopamine has many functions in the brain, including important roles in behavior and cognition, motor activity, motivation and reward, inhibition of prolactin production (involved in lactation), sleep, mood, attention, and learning. Dopamine is commonly associated with the pleasure system of the brain, providing feelings of enjoyment and reinforcement to motivate a person proactively to perform certain activities. Dopamine is released by naturally rewarding experiences such as food, sex, some drugs, and neutral stimuli that become associated with them. Dopamine is at work in motor control areas in the brain as well as thinking areas of the brain.

From everything I have read it would be dopamine and its work within the thinking areas of the brain that would be pertinent. In that area dopamine is responsible for feelings of bliss and pleasure, euphoria, appetite control, feeling focused. If you take a quick look at the emotional symptoms of D-MER you have feelings of displeasure, dysphoira, loss of appetite and lack of focus.

It would not be truly possible for D-MER mothers to have low levels of dopamine all the time. There are too many reports of feeling good, even elated, in between letdowns. Interestingly as dopermine levels rise one becomes excited and energized. Too high though and it turns into paranoia and a feeling of over stimulation, a feeling I can sometimes attest to as well as the elevated and energized mood at times. If dopamine stays low it is associated with low mood, depression, poor concentration and memory and fatigue. So of course I am thinking that during a D-MER episode a mother may have inappropiatly low levels of dopamine but it’s not straight forward, of course this is where the hormonal milieu comes into play. It’s not going to be “just” dopamine or “just” oxytocin; it’s going to be ‘something’ playing off of ‘something’ when ‘something’ is not right with this other ‘something!’

There is also the phenomenon of dysphoria, not just low mood, but also feelings of panic, anxiousness, irritability, restlessness, need to “get away” and suicidal ideation, when dopamine is suppressed by drugs. These are feeling dopamine is not usually help responsible for on its own, but feeling that are expressed within the context of D-MER. (It would also serve us well to take a look at premenstrual dysphoric disorder (PMDD) and it’s possible connections to estrogen/dopamine as well, but that is off topic and more of a mental notation on my part.)

One reason I started to get excited about the idea of dopamine is because I was finally able to connect that idea to other factors and questions that have come into play. 1.) One important connection here is that low levels of dopamine are connected very directly to restless leg syndrome. Several mothers who have experiences RSL syndrome have connected the emotional feeling of D-MER to the feeling during an RSL episode. 2.) Another connecting factor is that dopamine is released with cigarette smoking. And smoking we have found out diminished the feeling of D-MER within a certain time frame. 3.) Dopamine takes a big drop after orgasm and seems key in determining sexual satiety within its relationship to prolactin. Is this a start of an explanation for sad nipple syndrome? 4.) High calorie foods increase dopamine, perhaps why a mother may not feel a D-MER after severely overeating?

That’s a lot of information for now, and it answers no questions, but asks more, but it is a very interesting angle to be discovering.

NEW Online Research Survey

It can be found here.
Some of it is repeated from the old questionnaire, some of it is new. Even if you took the old one, please feel free to repeat and take this new and improved version as we are formalizing our research and collecting further details. It takes about 15-20 minutes to go through and can be completely anonymous if you choose. It is part of the all new site that should be launch with in the month of June.

Thanks for your time!