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!!!

Forum Relocation

Again, part of the new website, I am moving the D-MER forum to a different host, one that it affiliated with d-mer.org new hosting service. It's ad-free. I simplistic format, but easily navigated and will serve d-mer.org purposes well. Check it out!! It can be found here.

Be sure to let me know if you encounter and errors with it as we iron out any bugs!

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!

Coming Soon....

Watch for an ALL NEW www.D-MER.org offical website

Coming Soon!

D-MER Awarness Store

A cafepress store featuring D-MER awareness products has been launched and can be found here.

The store features artwork with the d-mer.org symbol as well as various awareness phrases featured on a variety of products.

The store site is shared with "Birth, Breastfeeding & Babywearing Original Artwork" but they have given us a product section specific to D-MER awareness and they are donating any proceeds to D-MER.org for operating costs.

Note, due to a concern emailer I want to reiterate: The D-MER awareness shop is not for profit. There is a small markup form what cafepress charges for production and the mark up will go to cover D-MER.org's operating costs. NO ONE is making a profit from the awareness products.y of the product on the shop are not affiliated with DMER.org, only the D-MER section is affiliated with D-MER awareness.

D-MER Media Awareness Piece

I created an awareness piece. It can be seen here. Thank you to the mothers that shared their stories and their photos.

The Latest

I am working closely with two wise IBCLCs now as well as a few extra MDs and others in the mix here and there. We are narrowing things down and getting closer!

Likely mechanisms are:

• Too much oxytocin
• Too sensitive to oxytocin
• Too many oxytocin receptors
• Too many where they shouldn't be

We are working on lining up oxytocin testing (finally! Something I have been trying to do myself since the beginning!) And will be doing yet another more thorough thyroid panel.

We are looking into the idea that there's a pregnancy (or other) medication that's fairly common that might have caused a more sensitive response to normal spikes of oxytocin. Right now we are looking at blue and black cohosh, sometimes given to start labor.

Those are the mechanism thoughts; as far as treating D-MER goes we are still looking at varying antioxytocics.

One another note we are also trying to give D-MER an official definition and looking closely at our phrasing. My fantasy right now, D-MER in wikipedia!!

Making Progress

I want to say that progress is continuing to be made and I do my best to keep everyone abreast without yanking everyone around too much as we toss around ideas.

When we first started to reach out to some of the key players in solving the mystery of D-MER, we were hesitantly received at first. Mainly because it was very easy for everyone to say, “This sounds like a psychological problem, not a physiological one.” But because I have had contact with these one hundred other mothers we were able to prove again and again, with many various reasons, why this must be a physiological problem. Meaning we have been able to slowly get others on board that this is hormones or chemicals in our bodies, not past experience or repressed memories that are causing it.

We have sought the advice the top lactation experts in the field of chemistry of lactation, thyroid function within lactation, the top researchers of ultrasound research within lactation and the world’s leading oxytocin expert. We also have gotten valuable input and information from various online communities of lactation specialists as well as many mothers with D-MER. We continue to formulate theories and get more concrete ideas as we go along. As my co D-MER researcher has said, “We must surely be getting closer to a basic understanding of some kind!” It is true that we have had our fair share of theories come and go, but in the spirit of Thomas Edison, I can say, we have not formulated 1,000 bad theories. We have successfully discovered 1,000 things that do NOT cause D-MER. That brings us that much closer to the true cause. And more importantly, the case for figuring out D-MER gets stronger and stronger as it piques more in more interest in the lactation community. We often feel the answer is out there in someone’s hands, it is just a matter of speaking to the right person!

Questions continue to come up as we sort of the puzzle and so I hope you will check into the forum and participate in conversation. It is a good place for medically professionals to see what is going on with D-MER mothers, as well as a good place to find support and empathy as a D-MER mother.

I was reading back to some of my old musings before I had been able to get anyone to pay attention to me! So much has changed since then, now that I have people on my side. Progress is being made and things are moving forward. I “just” needed someone who believed me, knew all the right people, and had hours a day to spare to work on D-MER with me! Just! My co D-MER researcher has been a blessing and a God send. None of this would be happening without her.

Paradoxical Effect of Oxytocin

Paradoxical Reaction: A paradoxical reaction is when medical treatment, usually a drug, has an opposite effect to an effect normally expected. An example of a paradoxical reaction is when a pain relief medication causes an increase in pain. Some sedatives prescribed for adults, actually cause hyperactivity in children.

OR another example would be oxytocin. It’s suppose to make you warm, fuzzy, relaxed but it makes some one anxious, sad and hopeless instead.

This was part of my first theory when I first started on my journey to give D-MER a name and faces to go with it. I still go back to this one, when all the others hit dead ends. But other then having this new medical term “paradoxical” we am not much father in proving/disproving it. It is the only theory that has stood the test of time, as other ideas and theories have fallen by the way side.

I can say that each week we get closer to figuring it out or finding the right person to give us the missing piece of this puzzle.

A Look at the Amygdala (AH-MIG-DA-LA)

The Amygdala (actually the amygdalae because we have two but everyone else seems to refer to them in the singular, so I will too.) The Amygdala is in the brain. It is located no where near the pituitary but is coincidently has a lot to do with lactation. This is because oxytocin receptors are expressed by neurons in many parts of the brain and spinal cord, including the amygdale. Basically, oxytocin suppresses the activity of the amygdale. So what does the amygdala do? It has a primary role in the processing and memory of emotional reactions. Secondly it has a major role of the amygdala in controlling fear and anxiety.

When oxytocin suppresses it, what function is it exactly suppressing? Well that’s what I’d like to know but I don’t have the answer to that one.

We have established that many of the D-MER feelings lie within the depressive spectrum. The amygdala controls emotion and feelings, but does it have anything to do with depression? Studies of patients with depression have implicated the amygdala in the neurobiology of major depressive disorder. We also find that a common feature of depression is loss of appetite and an inability to feel pleasure; or, conversely, an overwhelming sense of hopelessness and despair. In large part, disturbances such as these can also be attributed to amygdala abnormalities.

Some more interesting facts about the amygdala that may tie into D-MER

• Oxytocin reduces maternal fear of the newborn, an effect that is exerted in the amygdala. Oxytocin is, however, also involved in the control of maternal aggression by actions in the amygdala

• Recent research suggests that parasites, in particular toxoplasma, form cysts in the brain, often taking up residence in the amygdala. This may provide clues as to how specific parasites manipulate behavior and may contribute to the development of disorders, including paranoia

• The amygdala has a responsible role for the fight of flight response and for panic disorders.

• When there is damage to the amygdala (and its function is inhibited) it shows a decrease in "emotional tension."

• There are some references to the activity of the amygdala altering food preferences, appetite and food intake.

• The amygdala, because of its ability to process olfactory stimuli and stimuli with affective properties, might play an essential role in ‘gating’ the neuroendocrine response to stress during lactation. (In English: The amygdala can process sensory stimuli and so it might also play an important role in controlling the hormonal responses to stress during lactation.)

• Next, Neumann and her research team tested what effect direct OT insertion into the brain of virgin female rats would have. They found that "driving up-regulation of OT receptor binding in the central amygdala, using adeno-associated viral vectors, reduced the level of anxiety and promoted social dominance behavior in virgin females

• In addition to these anatomical and physiologic processes, breastfeeding is a process that also involves psychological and emotional responses in the mother. Many areas within the maternal brain, such as the amygdala, the striatum, the vagal motor and sensory nuclei, and preganglionic sympathetic neurons of the intermediolateral column of the spinal cord undergo profound morphologic and secretory changes during lactation. Although prolactin and oxytocin are primarily secreted by the pituitary gland, both hormones are also secreted in these higher brain regions and have been implicated in promoting maternal behavior. Furthermore, these lactogenic hormones can be released in the brain not only by suckling, but also by close physical contact such as that experienced during breastfeeding, thereby maximizing the neurohormonal response.

Why the Term Depressive Milk Ejection Reflex?

Because of the: The Depressive Spectrum

* Low mood

* Low self-esteem

* Pessimism

* Fatigue, reduced energy

* Disturbances of appetite

* Agitation or retardation

* Guilt

* Sense of worthlessness

* Hopelessness

* Helplessness

* Poor motivation

* Poor concentration

* Indecision

* Loss of interest or pleasure in normal activities

* Recurrent thoughts of death

All of these words listed in The Depressive Spectrum are words mothers with D-MER (ranging from mild to severe) use to describe how they feel with their D-MER.

A Poem for Mothers with D-MER

My baby, her birth, such joy and such hope.
So loved and welcomed by kith and kin.
So right and so good!
My baby, her birth, such pride and such peace.
All I had hoped for, all I had dreamed.
So right and so good!

My baby, her mouth, so gentle and sweet.
She nuzzles and sighs and finds the breast.
So right and so good!
My baby, I hold her, feeling her warmth.
I nurture this darling, this dearest joy.
So right and so good!

But now - I stop. Where is the warmth and maternal?
I should gaze into my baby’s eyes.
So strange and so odd!
This feels different from the times before –
the times I nursed with my other babies.
So strange and so odd!

My milk, it is going to flow, but a horror
A horror precedes it, heralding the letdown.
So wretched and sick!
A pit of hollowness deep in my stomach.
I’m filled with anxiety and dread.
So wretched and sick!

No hunger, just gagging and ready to heave.
The tears and the weeping, the deep-seated pain.
So horrid and vile!
Despair and hopelessness, wretchedness and gloom.
I’m worried and fearful and lost. Such misery.
So horrid and vile!

Though its lifespan is short - a few breaths or a moment
It pierces like homesickness, stabbing deep into my heart.
So painful and cruel!
Again and again my sweet milk is announced
By anguish and torment, suffering and grief.
So painful and cruel!

It’s a feeling of guilt and of panic, of fright.
And I don’t understand it. Tell me, what is it called?
I cannot tell others. They will judge and accuse.
And I don’t understand it. Tell me, what is it called?
It’s not in my head. I feel so… undone.
And I don’t understand it. Tell me, what is it called?

Oh, my baby! My love! How I cherish my baby.
But someone, please. Tell me, what is this called?

-By A.M.H and E.A.J

Reexamining the Thyroid

There has been a little conversation with an IBCLC with expertise on the thyroid function with lactation; someone says “she has found that "subclinical" thyroid issues can actually have clinical significance for lactation….Wouldn't it be interesting if the common thread for all the D-MER cases is a minor thyroid issue - one that doesn't get flagged on routine screening!” Now I did have a thyroid panel done myself, and interestingly enough I did have the subclinical (mildly low) TSH level. My GP though felt that it was not of significance. But it looks like it could be of significance to lactation! I personally will be getting a full thyroid panel re-checked this week. And I encourage all the other mamas with D-MER to do the same, and then come to the forum to talk about the results! Maybe we are getting close to the common link! If anyone does move forth with thyroid testing it is going to be very important to tell your practitioner that you are looking for all the results, even if they are subclinical. Better yet, have them mailed directly to you so you can see for yourself. Because the thyroid function may be off just enough that a doctor may not find it note-worthy, but a little but of dysfunction in the pituitary can have a big impact on lactation.

What Other Mothers Say They Experience with D-MER: Gathering Data

I want to share some of our findings with you and also point out to you the new questionnaire also available in the right hand menu. It is for data gathering for D-MER research. There are more professionals involved in this project now. An article is being formulated for the Journal of Human Lactation and further hormone testing is going to be taking place, and an effort is being made for data gathering. Your help is needed! Please participate by filling out a questionnaire and sending it in!

Some figures for your interest in the mean time:

67% of mother experience a hollow feeling in their stomach

55% have feeling of anxiety

55% feels like there is something in the pit of their stomach

50% have feelings of depression

47% experience sadness

44% of mothers feel hopelessness

44% describe it with “yuckiness”

44% have general “negative” emotions

41% say it’s an “ickyness”

41% experience a feeling of dread

35% have an urge to “get away”

38% experience irritability

29% experience a sense of guilt or shame

29% feel tearful

23% feel nauseous

23% of mothers say the feeling is familiar of the past

23% feel panic

20% of feelings of aggression

17% suffer a loss of appetite

14% have suicidal thoughts

14% feel homesickness like feelings

What Does it Feel Like?

It's like that flip flop of hollow panic in the center of your gut when your child falls off the monkey bars and you think it might be serious, or when you think an officer is going to pull you over but find out he's after someone else, or when you momentarily loose track of your child at the store.

It's like a horrible sadness in the center of your abdomen when you hurt your best friend’s feelings and you think you may not be able to fix it, or when it's been a horrible day and you feel like you have no one to talk to, or when you feel like nothing you ever do turns out right and you might as well give up.

It’s like a pit of guilt in your stomach, like when the cashier miscounts the change in your favor and you walk out of the store even though you knew of the error, or the feeling you get when everyone is so proud what you did, but you know you cheated to get there.

It’s like the feeling of the dread that you feel in your center when you have to take an exam you are not prepared for, or when you made a bad decision and can't take it back.

It’s like the churning angst you get in your middle when your name gets drug through the mud, or when someone you care about corrects you in front of important people and embarrasses you, or when you find out about horrible rumors that have been spread about you. It’s how you feel when everybody is going to know it was you, what you said, or what you did, and how very wrong it was.

It’s like the feeling of introspectiveness you get deep inside when there’s no going back, when you can’t fix something unbearably wrong, when you feel completely off course. It’s a feeling like….

Life feels very wrong and you don't know where to start.

The Many Faces of D-MER

It never occurred to me to use the word anxiety. Some of the women I talked to used it, about 50%, but it never fit “my” D-MER. That first made me conclude that not only does D-MER come in different degrees of severity, but that it also presents itself with different emotions to different women, and perhaps, maybe different emotions at different times to the same woman.

For example; perhaps my daughter gets her feelings hurt at the playgroup and I deal with that, move on, and then go to nurse my baby. My D-MER may feel more like hopelessness and sadness as I try to sort out the feelings. Sure, the emotions are not “real”… it’s not because of the playground incident, it’s because of the D-MER. But when I spontaneously try to connect it to something, that’s what fits. Maybe later my husband calls and tells me that the checkbook bounced. I go on with life, nurse my baby and when I experience D-MER it feels more like anxiety. Later, someone at the grocery store criticizes me for wearing my baby, I go home and nurse her and my D-MER is construed as irritation or embarrassment. Really bad day, right!?! OK, so that’s just an example of how it is interpreted totally differently depending on the feelings that were previously present. Which stresses previous posts: I personally feel like everything in my life has to be perfect, so that there aren’t any other emotions to cause me to think that it’s anything more than just D-MER, and then I can really say to myself “this is not real.” Easy enough right? Have an uncomplicated stress free life and you can know when your D-MER hits, nothing is really wrong!!

Does it have one stronger feeling over another? I tended to use the word “depressive” because it felt all inclusive. It’s yucky and icky and uncomfortable…experiencing all that makes anyone feel like a depressive veil has come over you.

Here’s my list:

• Hollow feeling in my stomach
• Ickyness
• Yuckiness
• Repulsion to food
• Desire to curl up and disappear
• Guilty feeling
• Ill at ease
• Bothered (not irritable, but bothered)
• Emotional upset
• Apprehension
• Grief, a sort of sadness
• Introspective
• Desire to be alone
• Fear of failure or of having failed
• Not “nausea” like with morning sickness or the flu, but ready to throw up anyway, I have even gagged before
• Discouraged, broken down
• Weepy/tearful
• Worry
• Difficulty concentrating
• Exhaustion
• Oversensitivity
• Overreaction and devotion attention to tiny details
• Restlessness
• Inability to cope

I never used the word “depression” Because when I think of depression I think of a long term condition, like postpartum depression, or other types of depression, that don’t come and go so quickly. D-MER comes and goes, but creates feelings that causes mothers to ask themselves “am I depressed?” for a couple minutes before dismissing it. D-MER isn’t a depression, but for the moments that it does last, it is very depressive.

There is a new poll on the right hand menu addressing various feelings that are experienced during D-MER, I encourage you to take it, to help us gather information on what other mothers experience.

Speaking of being over too quickly, (or not quickly enough is really the case!) I have to be honest and say, along with all the other D-MER mamas, this is an emotional roller coaster for me. When I am not having a let down, I feel fabulous. Sometimes during these times I criticize myself for making such a big deal out of my D-MER. “I’m so whiney” I think to myself. “I just need to get over it, move on, push through.” Funny thing, when the D-MER hits, I am suddenly thinking “How come nobody gets how BAD this is! How can I go on living!?! What form of torture IS this?” It can be hard to be an advocate for myself when I have a 90 second window 9 times day of feeling like I want to run away or jump off a cliff. But when it’s bad, it’s bad, and it affects more then just my head - it spills over and affects my children and my family and my general health and well being. I personally feel ready to wean at least once a day, but then I would have the real life guilt and remorse of having done that since I am 100% committed to child led weaning, and so I feel like, at least in my case, weaning would solve nothing.

Starting to Collect Numbers

I started an informal poll on mothering.com in the breastfeeding forum, simply describing D-MER and asking “Do you experience this, yes or no.” Though the numbers I am working with are small (around 100) I think it is significant that as people have responded the percentage has been a fairly constant 25% of mothers experience D-MER. That’s 1 in 4. Out of 100 mothers, 25 of them would suffer from some level of D-MER. I will ask the question again…WHY don’t we know more about this? And some ponderings to go with it: are the numbers that high in less developed countries? Have woman all through history experience D-MER? Is this strictly a human problem or do mammals closely related to us experience it too? Is this something that was common knowledge “once upon a time” as something that sometimes happens but then as we stopped breastfeeding in our culture we lost the information about it that used to be shared between women?

Shifting the Focus

Nobody has wanted to touch me with a ten foot pole. The OBGYN, the General Practitioner and the Endocrinologist….even some LCs didn’t want to mess with what they don’t know.

I did find somebody though. I went back to my blessed un-named lactation guru, this time, not as a CLC wanting to know why all these mothers, along with me, are experiencing this, but as a desperate mother reaching the end of her rope because it’s just not getting better! In fact in some ways it’s worse.

Bless her heart, she’s working with me and tapping into her resources to help me at least “cure” this, though no promises on finding the cause in the process. That would just be the icing. Really right now, I just need to get well.

I do my worst blogging when I write WHILE I research (vs. after I research!) but I I will do my best to keep the reports coming.

I was given the name of some other hormones connected to anxiety to research. Sometime I just have to write as I learn in order to put it all together more easily in my own head! I will soon be getting to that.

I can’t say I have actual “anxiety” symptoms when I experience my D-MER, but it has anxiety undertones at least. It is hard for me to say whether it feels more like a depressive veil or an anxious panic when it hits. I think it has many different layers and can even present itself differently depending on where my mind races off to when it hits. I would be interested in hearing from readers whether they think it presents more like an anxious feeling or a depressive feeling to them.

In my communication with my LC we covered lots of different bases: birth experience, pregnancy problems, the first days of breastfeeding, length of labor, separation of mother and baby, whether or not there was any history of abuse, connectedness and “in love” feeling toward baby, on and on. There must be some kind of commonality between mothers, but we can’t find it. Even if it is hormone related, what is it that triggers this hormones cocktail in some and not others? Is there a possible cause that we all have in common? Or is it just Russian roulette? That’s a whole other ball game - not only find the cure, but also the cause! Maybe someday we will, but we are going to have to work backwards for now and start with trying to find a cure. And perhaps the other pieces will fit together in time as it is realized how many mothers are experiencing this and it begins to get more attention.

Oxytocin and Vasopressin- What it Affects OUTSIDE of Lactation

If it is oxytocin overload; there IS a drug that has been produced as “an antagonist of oxytocin receptors called Tractocile. This drug is registered in many countries to suppress premature labor between 24 and 33 weeks of gestation. It has fewer side-effects than drugs previously used for this purpose (ritodrine, salbutamol and terbutaline).” I know nothing else about this drug, nor do I know if it’s safe while breastfeeding and I still of course don’t know if oxytocin is to blame. But I have given much thought to having a medication for treating D-MER. My biggest concern would be that mothers would continue using it once their D-MER was diminished and then compromise the continued success of breastfeeding because the medication would send their oxytocin to such a low level that their milk may not be able to produce a milk ejection reflex, this would suppress lactation completely.

Oxytocin levels of course affect other things in our life and if they are high in mothers with D-MER it makes me step back and think about the other things that it could affect in the mother other then lactation. “Oxytocin has multiple known, and, most likely, unknown, functions in both the brain and the body. Some of the known functions of oxytocin are inducing labor contractions and milk ejection, contracting the vagina, and contracting the smooth muscle in the intestines and stomach. It also induces changes in the major hormones that control digestion and raise sugar levels in the blood. In addition, it affects water and mineral balance in the body and blood pressure and heart rate….Sexual arousal is increased or more easily achieved, bonding is increased, maternal behavior is increased, it increases trust and reduces fear, it affects generosity by increasing empathy during perspective taking and certain learning and memory functions are impaired by high oxytocin levels.”

I wish I could write so easily about vasopressin but there is not enough information about it. If increased or decreased levels of vasopressin are to blame, there are also vasopressin analogues and agonists that are currently used in conditions featuring inappropriate vasopressin secretion, as well as for control of bleeding and in extreme cases of bedwetting by children. What I can find about how vasopressin works generally is, “one of the most important roles of vasopressin is to regulate the body's retention of water, being released when the body is dehydrated; it causes the kidneys to conserve water, concentrating the urine, and reducing urine volume. It also raises blood pressure by inducing moderate vasoconstriction. In addition, it has a variety of neurological effects on the brain, having been found, for example, to influence pair-bonding in voles.” Its roles are played out in kidney function, the central nervous system and the cardiovascular system. Out of those three main functions I go right to its role in the CNS. Vasopressin has been implicated in memory formation, including delayed reflexes, image, short- and long-term memory, though the mechanism remains unknown. Vasopressin released from centrally-projecting hypothalamic neurons is involved in aggression, blood pressure regulation and temperature regulation. In recent years there has been particular interest in the role of vasopressin in social behavior. It is thought that vasopressin, released into the brain during sexual activity, initiates and sustains patterns of activity that support the pair-bond between the sexual partners; in particular, vasopressin seems to induce the male to become aggressive towards other males. All this is of course telling us nothing about it’s affect of D-MER but if it can be traced back to other symptoms that mothers with D-MER are having as well, it’s a good clue into further assumptions and also reminds us that a mother with D-MER may have an explanation for other things she is experiencing in her life, a long side of D-MER.

For example, personally, naming a few things, I have found a stronger bond to my baby then I imagined possible, and this is my third baby! And if you are ready for “too much information,” I have been more sexually active with my husband the past 8 months than perhaps in our whole marriage! I have also been more scatterbrained and generally thick in the head than I feel can really be blamed solely on the typical “mommy brain.” I have also noted uterine contractions while nursing, even as late as 7 months postpartum. It could be that these things are being also being caused by the way my anterior pituitary is acting while I have D-MER.

I would be able to narrow it all down if the endocrinologist wasn’t so resistant to seeing me based on my symptoms alone!

The Pituitary-What DOES It Do?

Delving further though, what is the pituitary and what does it do? Well it’s responsible for a lot of things - “growth, blood pressure, some aspects of pregnancy and childbirth including stimulation of uterine contractions during childbirth, breast milk production, sex organ functions in both women and men, thyroid gland function, The conversion of food into energy (metabolism) and water and osmolarity regulation in the body.” It is interesting to note though, that thyroid function (and interestingly enough also prolactin) are controlled by the anterior pituitary. Oxytocin as well as its sister vasopressin are controlled by the posterior pituitary and those are the only two major hormones the posterior pituitary are responsible for. Though this gland is only the size of a pea, it seems that the two separate sides function quite separately. This leaves me to assume, that my low TSH level has nothing to do with my D-MER.

I then go back to thinking about my posterior pituitary, oxytocin and vasopressin. If the oxytocin levels were low, women would have trouble letting their milk down, like breastfeeding mothers who smoke. The nicotine blocks the release of oxytocin and delay letdown. This is not a problem mothers with D-MER have. I have found nothing on what increase levels of oxytocin can do or what it means. Vasopressin is something we know a lot about, but not in its relation to breastfeeding. Outside of lactation: underproduction of vasopressin can cause neurogenic diabetes insipidus (affects the kidney and causes constant thirst, drinking and urination.) Overproduction of vasopressin can cause syndrome of inappropriate antidiuretic hormone (simply put, fluid overload.)

And there’s your pituitary lesson in a nut shell.

What to Test & What does it Mean?

If you have the kind of doctor that lets you request what testing to get done I recommend the following, the Thryoid Peroxidase Antibody, T4, T3 and TSH, and Prolactin. I would think your GP or OB would throw in a CBC for good measure. Then off to the endocrinologist for more hormone testing, but I haven’t gotten that far so I can’t go into further detail about that yet.

Many people have emailed asking about how the thyroid could affect D-MER. All I can go on is my personal tests. I did not have a T3 done (I am not sure when since my THS came out a little low, I would have expected my doctor to do that for further testing.) But other then that, the thyroid tests came back OK. The lower THS with normal T4 means that I am borderline hyperthyroid (mild/subclinical) but not low enough for my doctor to think it is anything but postpartum adjustment. I did find something interesting though, about low TSH levels, “Rarely, a low TSH result may indicate damage to the pituitary gland that prevents it from producing adequate amounts of TSH.” All I can say about this is what I said in a previous post in regard to the pituitary glad and breastfeeding, “goodness knows our pituitaries get a major, major workout with breastfeeding!"

Reemphasizing Vasopressin or Unknown Other

This blog journey started when I first had my baby, before I had done anything to figure out what my D-MER was or what may be causing it. Therefore at the beginning I focused a lot of my attention on oxytocin and how it may be responsible. But that was largely assumption. It could still be true but it was also drawn to my attention recently that some of my readers continue to assume oxytocin is the culprit. I want to reiterate that we do not know that.

Oxytocin has a sister, vasopressin, and not much is known about how vasopressin really works with breastfeeding. It could be that vasopressin has a tendency (or at least the ability) to be oxytocin’s evil twin sister for some women while nursing. For example we know that some women experience D-MER sensations with nipple play during sex, but do not have D-MER during breastfeeding. Also some mothers have D-MER but never experience the D-MER symptoms during sex or foreplay.

Another point to ponder is that for most women the sensation of D-MER is one that they have felt before, perhaps in times of guilt, homesickness, or anxiety. This leaves me thinking that the hormonal cocktail that causes D-MER can be achieved in other times as well.

It just reinforces the point: we do not know why. We just know it happens, and it happens to more women then I think anyone ever imagined. Oxytocin, vasopressin or some other unknown factor…low, levels, high levels, roller coaster levels…I do not claim to have any answers in regards to this. I only have my suspicions and guesses.

The endocrinologist I was referred to refused to see me (based on the fact they were unfamiliar with this condition) but did tell my general practitioner to order a deeper thyroid level test. Right now, for anyone’s comparison, at the time of testing, my prolactin was 53.7 (normal for breastfeeding mother 6 month postpartum is 50) , my free thyroxine (T-4) was 1.32 (normal range is .93-1.70) and my TSH was .06 (normal is .27-4.20) This does mean my TSH is low, but as you can read here, it is not the kind of low that cause hyper or hypo throyridism. The level is low on its own (not in conjunction with T-4) and my GP feels it is appropriate level for being so newly postpartum. It sounds like if this new thyroid test (which the results of I will post when I receive them, perhaps the thyroid has more to do with it then previously thought) shows levels that are low or high, then perhaps the endocrinologist will see me. This is important, not because I expect them to “cure” me (which is why I am sure they do not want to see me to begin with- they are sure they can’t cure me) but because they are the only ones able to test my oxytocin and vasopressin levels. They may not know what to do with me if these tests come back at inappropriate levels, but it will give me the knowledge I need to move forward to try and draw a conclusion as to what causes D-MER when I go back to working with lactation specialists.

Depressive Milk Ejection Reflex

Also can be known as D-MER. I feel this name encompasses all the varying severities of the condition. It also uses the term “milk ejection reflex” which is the medical term for letdown; in this way it emphasizes that there is a scientific explanation for this problem. With a name, mothers can now feel free to explain there situation as a true medical problem, as in “suffering from acute D-MER” or “experiencing mild D-MER symptoms.” This will hopefully become a term that will become more familiar in the lactation and medical community and though we still search for a cause, we can at least give it a name and continue to inform mothers that they aren’t alone.

Raising Public Awareness

I do have a next step. I am not giving up. I am working, under the guidance of a free lance editor, on writing an article that I will be submitting to Mothering Magazine and New Beginnings (LLL’s magazine.) It will not be an article that draws any proven scientific conclusion because I have none yet. What it will be is an article to raise awareness of this condition. It will show that this happens - although it is not what the normal breastfeeding experience should be. It will be about how it is okay to talk about it with others and it will “normalize” it in that sense. Hopefully with the power of numbers that I have behind me thus far, I can convince the magazines that the article is worthy of publishing. I feel it is the only way right now to get the attention that this deserves. Another goal I have for the article is to give this a condition a name. We all keep referring to it in various adjectives: “I feel……before letdown.” It needs naming. It needs to be given a name so that mothers can freely and clearly say “I suffer from……while breastfeeding.” I heard from a LLL leader who had experienced it call it the “Letdown Blues.” While this may be a good way to describe it for some mothers, other mothers suffer from it much more severely. The term “Letdown Blues” truly undermines their suffering. It is like telling a woman who really has PPD that she just has Baby Blues. It’s like comparing apples to oranges. The twinges of “Letdown Blues” in no way even begins to describe the extremity and severity of what many of these women are experiencing – it simply trivializes it and is unfairly dismissive of it as well. What is needed is a medical term that sums up the condition in all its forms, both mild and severe. That way mothers can talk to IBCLCs or LLL leaders and explain that they experience “mild or severe - fill in the blank”. As I begin to gather and consider possible names, please feel free to contact me with ideas of your own.

The Numbers Must Be Staggering

The past several weeks I have been swamped with PMs and emails from mothers saying the same thing, “I thought I was the only one.” That is why the blog itself has been so neglected - I have been very busy with personal correspondence. The stories range from those with no so severe symptoms, those who put it together once hearing about it, to those who have it disrupting their whole life. I have no way of determining at this point the percentage of mothers that must encounter this. I have found nearing seventy- five mothers and that is across only three forums. Most admit they were too embarrassed to ever say anything to anyone which is probably one of the reasons it has gone without proper attention.

That being said, I am disappointed and sometimes straight out angry with the lactation community. (And as a CLC, I take much pride in the lactation consultants worldwide and have been proud to consider myself among them.) But here is something many of them have gotten wind of some way or another and they have dismissed it, denied it and over looked it. In regards to this particular issue, the lactation community has failed the population of breastfeeding mothers. But now they will no longer wonder why some women choose not to nurse, and they can no longer avoid educating pregnant and nursing mothers about such a pertinent issue. And we can be encouraged that at least some of the lactation consultants are listening: this was emailed to me by one of the lactation consultants I was corresponding with: “It seems to me one thing we can do for all of you is to acknowledge that this happens, that it's not terribly uncommon, that it often but by no means always goes away on its own, and that we're working to find a reason and solution. You're right; it's been swept under the table. No one likes to admit that something icky exists without explanation or solution. Better to say it's uncommon and will go away on its own and move on to something more fun, like breast abscesses. You're casting light into a dark corner... and it's time someone did!”

Shouting it from the Roof Tops

My new goal of the week was to get the word out there. Since starting my blog and posting it in the breastfeeding sections of two of my frequented forums, more and more mothers have been contacting me saying, “I thought I was the only one.” It has inspired me to go searching for others like myself, who think they are completely alone. While I was digging for threads on some of the better know forums, (the links can be seen on the right hand side of the blog page.) I started to encourage any other mothers currently struggling with this themselves to do the same on boards that they are apart of. And I encouraged anyone who felt like they had a story to share, to share it with me. By emailing me, posting a comment or joining my new support forum that is strictly for talking about this issue, we can come together to support one another. I want to hear from everybody; I want to take action.

The Missing Link

After weeks of digging and of trying all sorts of doors, I seem to have stumbled upon one that led somewhere. I started tapping into my professional resources and found some posts of lactation consultants casually seeking answers to this problem. One of them had a theory. And not just anyone but a renowned breastfeeding guru that lived an hour away, someone I had met, seen speak publicly, and even emailed with. Her post about the depression/letdown problem had been years ago but I emailed on the off chance that she was still interested in figuring it out; and she was. Not only that, but she got two other published authors involved in the email discussion with me. We first discussed and ruled out this possibility: “…a mammal mother who eats or pushes away or kicks or otherwise abuses any baby that isn't her own. Is it possible that these mothers are getting a negative feeling about the *baby*, but are so culturally/mentally committed to the baby that they don't make the connection? Might it be the flip side of oxytocin - an urge to get away from anyone who isn't "your own"? *Something* drives the typical mammal mother to refuse to nurse the alien baby. Are these mothers picking up the scent of a strange baby?” However, I had an easy homebirth with no separation from my baby and so based on my case alone we were able to rule out that theory as a problem in this case. Next came another idea: “Let-down triggers oxytocin, and high levels of oxytocin can trigger unremembered feelings of abuse. Since at least 1/3 of women in North America were sexually abused, this is another possible cause of depression during let-down. When I worked as a Doula, some very surprising memories sometimes surfaced during the transition phase of labor that the woman didn’t remember before or afterwards.” Agreeing that this could cause all sorts of breastfeeding problems in some cases, once again we ruled it out for this particular problem, as this was my third baby, but first time with this problem. So we came back to the original theory that went out years ago on this email board that I had been archive searching - a little known hormone called vasopressin…so little known in fact that my nurse practitioner had never heard of it and didn’t even know how to test for it. Well, who does specialize in hormone levels? Apparently endocrinologists do.

So now it is time to find one and make an appointment. But I am feeling discouraged because, although I am working with some LCs behind the scenes on the “research” side of things, as far as figuring it out for myself, I am still working alone. So when a doctor says, why do you want to get your vasopressin tested? What am I supposed to say?

And to close out this chapter - what about vasopressin and how is it related to oxytocin and why would it cause a depressive feeling? It’s hard to find stuff out. Take a deep breath and dive in to this scientific explanation: Oxytocin and vasopressin are the only known hormones released by the human posterior pituitary gland to act at a distance. The magnocellular neurons that make vasopressin are adjacent to magnocellular neurons that make oxytocin, and are similar in many respects. The similarity of the two peptides can cause some cross-reactions: oxytocin has a slight antidiuretic function, and high levels of vasopressin can cause uterine contractions. Due to (oxytocin's) similarity to vasopressin, it can reduce the excretion of urine slightly. More important, in several species, oxytocin can stimulate sodium excretion from the kidneys (natriuresis), and in humans, high doses of oxytocin can result in hyponatremia. Most cases of hyponatremia are associated with reduced plasma osmolarity. When in fact, the vast majority of adult cases are due to increased vasopressin, i.e., anti-diuretic hormone (ADH). And as far as vasopressin’s connection to depression, prepare your brain for this garble: Hyperactivity of the hypothalamic-pituitary-adrenal (HPA) axis is one of the key biological abnormalities described in major depressive disorder, occurring in 30-50% of depressed subjects. Corticotropin-releasing hormone (CRH) and vasopressin (AVP) are the main regulators of this stress system, with the two neuropeptides acting synergistically in bringing about adrenocorticotropin (ACTH) release from the anterior pituitary and cortisol from the adrenal gland. Based on the demonstration of elevated cerebrospinal fluid levels of CRH in depressives, and other evidence, it has been postulated that excess CRH and the resultant increased HPA forward drive form the basis of neuroendocrine dysregulation in depression. However, there is an accumulating body of evidence to support a significant role for AVP in the regulation of pituitary-adrenal activity in health and also in depressive disorder.

And all I can really say about that brain-boggling scientific data is that there is a lot that the pituitary gland is responsible for and, as my favorite breastfeeding guru said to me, "goodness knows our pituitaries get a major, major workout with breastfeeding!"

The Professionals Seek Answers Too

These are just a handful of post from breastfeeding professionals about this phenomenon. The quotes are taken from a message board for lactation professionals. The posts range in time line from 1998-2004. Permission to post quote was obtained where possible.

* A ped has asked me about a 7-week mom who experiences depression with each milk release. The depression lifts after a few minutes. I found a bit in the archives, but am wondering about mechanism and treatment. Vasopression (ADH or antidiuretic hormone) can be linked to depression. Does anyone know whether/how it's involved with oxytocin? Apparently the two are very similar chemically. Something somewhere makes me think there's a connection between the thirst that milk release generates and the fleeting depression this mom experiences.I've suggested that she use a good book, a good book on tape, or good music (all her definition of "good") to distract her during let-down, and that most likely the symptom will abate with time. I'm also wondering if just possibly *drinking* during let-down might help. Why am I connecting the depression and the "milk-release thirst"? Does it make sense to anyone else?

* I have been lurking for while and now have a question. Today I had a patient, a pediatrician, who gave birth to her 4th baby 2 days ago. At the end of my shift she asked if she could speak to me privately. This mom breastfeeds her babies for a long time but since her 2nd birth she has had a disquieting phenomena. As soon as her milk comes down she feels a feeling of sadness and aggressiveness. She cannot bear anyone to come near her, not even the children. This happens at each breastfeeding session for two or three weeks, and then disappears. She wanted to know if I had ever come across a woman with simular complaints. I hadn't. I could not explore this much further with her because she was on her way home...but I promised to throw this out to you all. Has anyone seen a woman with simular complaints? Would anyone have an explanation? She attributes it to "hormones" and although she assumes it is temporary, as in the past, she finds these feelings very uncomfortable.

* This is my first posting from my new address. I've tried to visit the archives but to no avail. I am a LC with a question from a long distance friend. My history may be inadequate as this was very brief conversation. Anyway here goes...

A second time mother has been experiencing depression ONLY when her milk "lets-down" , she is nursing her 3 week old infant and has been experiencing this "tearfullness" and, as she calls it *depression* only when she nurses her baby. She experienced this with her first child as well, and weaned at 6 months,(because of the sadness and tearfullness she was experiencing). Following the weaning of her 6 month old, the depression improved. She is considering weaning again because of this. I was unable to find anything in the literature I read. I do not have the luxury of asking her all the questions I would like to, but when I do ask, I want to ask the correct ones. Have any of you heard of this experience? She mentions she feels fine when she is not nursing. Could be some deep personal history, or perhaps a physiological explanation?? Any insights are much appreciated.

* D wrote that a mum in her group mentioned prolactin during let-down (MER) causing "anxiety, nervousness hyperactivity.." I recall, with each of my three, just for the first week of breastfeeding,

feeling a fleeting, but very profound, feeling of utter misery at let-down - lasting 1-3 secs at most - a kind of going to the dentist/got an exam feeling - then complete recovery. One other mother to whom I mentioned this, said she had a similar thing - she experienced fleeting anxiety.

* Several years I worked with a mother (who happened to be a clinical psychologist)who reported to me that she felt depressed each time she sat down to nurse and then the feeling would pass after a couple of minutes into the nursing. She would be fine until the next nursing. She was an avid nurser and the infant was nursing well. She had had no problems with depression before. She went on an extended out of town trip for a couple of months (!) and when she returned she reported that she no longer had those depressed feelings - as I recall it seemed to go away at around the third month or so. I also had a mom who felt nausea with let-down and several who had headaches with let-down - all of this passed within a few months...These mom’s were persistent and they went on to enjoy symptom free nursings. The power of oxytocin...

* While nursing her first and third child, she frequently experienced slight waves of nausea while her milk was letting down. It only lasted about 30-45 seconds and would end. With the third she also was experiencing overactive milk ejection reflex, and would have a wave of nausea and then the milk would let down, frequently when the baby wasn't even close to ready to nurse. She mentioned this at a LLL meeting hoping that someone would have an idea about it, and was met with a bit of suspicion- did you plan this child? Are you enjoying him? And all of a sudden she realized that these folks were being suspicious that this was a psychological reaction so she stopped talking about it and just accepted it as the way things went during this nursing. Baby nursed till he was 3...Did not experience it with the fourth child, who by the way, was much more of a surprise! Anyone have any ideas?

*I am working with a mother of a three month old. This is her third child. She complains of extreme nausea when her milk lets down. But also "having all kinds of bad feeling churned up from her insides," feelings of destructiveness ("like I want to take this glass and smash it against the wall") and a general feeling of being dangerously out of control for those few moments at the start of a feeding. Then she realizes what it is, again, and gets a hold of herself. She assures me she would never act on these feelings. She had the same feelings with her first, now 3 years of age, but much milder. And with her second, now 18 months, but a bit stronger, so she was greatly relieved to quit breastfeeding that child when she became pregnant with this third one. I discussed with her oxytocin release, drinking more water each day, eating prior to breastfeeding to control the nausea. Also ambivalence about breastfeeding (she does feel ambivalent, but because of the nausea and emotions, she says) and the possibility of abuse in her history (she feels that is not a factor for her). Two other things-mother and baby are dealing with yeast and mother reports very strong letdowns and her milk coming in even when she's not feeding the baby, but if it is around feeding times, even at this late date of three months postpartum. Any ideas?? And if it is excessive levels of oxytocin, is there any treatment you know of?

What Goes Up Must Come Down

I decided that the trick was to find natural ways lower my oxytocin, a funny thing to try to do really. In fact, in my research I even came across a blog about the street use of oxytocin - apparently it’s being snorted to reduce social stress with some college students. Everyone’s out to increase their oxytocin and I am out to lower mine. The bummer thing is that it’s the fun stuff that increases it, like exercise, orgasm, breastfeeding, cuddling, etc. It's the not so great stuff that lowers it, or inhibits its production, like alcohol, nicotine, stress, cocaine, morphine, neglect, sadness….you get the picture. I didn’t have many options to draw from! First of all I wanted to continue my date night with my husband, my physical relationship with him, my exercise time and all those oxytocin increasing activities, including breastfeeding. I decided that I needed to implement a healthy amount of stress in my life, regularly, and really try to balance things out. For starters this meant no “checking out” of real life on the weekends like I enjoyed doing. Instead of passing most of the responsibility to my husband, I would need to stay very involved in the day to day stresses. So during the week when things got crazy with the kids, I didn’t plop them in front of the TV and zone out at my favorite message board, I dealt with the stress that was handed to me. If my husband came home from work and I was unprepared after a hard day with dinner plans still up in the air, I didn’t give up and order a pizza, I took charge and figured it out. What a healthy kind of habit to develop actually! One evening I was amazed with how drastic the change was in me. I started having a very down afternoon. It was right after exercising, it was a weekend, and lots of wonderful things had taken place in the past couple days. I had every reason to be on cloud nine, but instead I was finding myself to be depressed and feeling horrid. And then while I was at the computer I came across a blog post that attacked my philosophies and passions as a parent. I found it quite offensive and upsetting, got really fired up and immediately went to work on writing my reply. By the time I was done, I found myself in a very giddy and happy mood. The stress of reading the blog and responding lowered my oxytocin levels and got me back to a place that felt good again. I have this type of scenario occurring again and again.

I have now found over a few weeks’ time that just the awareness of the feelings and knowing how to fix them has made a big difference. One thing I have taught myself was that it isn’t real. Very frequently when a letdown would hit I would be thinking about something specific: a purchase a made, something I had said to my mother, an interaction I had with my husband, an email I had sent, anything. These thoughts could be very positive and wonderful things, but when the letdown hit me I suddenly was overcome with guilt, remorse, confusion and disdain for what I was thinking about. I would start trying to figure out why I was feeling bad all of a sudden…trying to link it to the specific thought. “Was it an irresponsible purchase? Did I speak impulsively? Did I offend him? Should I have not blind copied that other recipient?” I finally realized these confused, worrisome feelings had nothing to do with the thoughts or issues…it was all about the letdown. They were in fact unrelated and the worry that ensued was unfounded with no valid basis whatsoever. It was simply the hormone. And the reaction to it for some reason would put anxiety and doubts into my mind - serious doubts that could even turn something fine or something wonderful feel wrong. Now when it hits I know to clear my mind, take my personal spirituality and channel all my energy there as hard as I can for a few moments until it passes. I do not waste my time even trying to figure out if the guilt or remorse is valid or true or not. I just determine that it is all false and that is that, and move on.

And the days when I felt lower than low? I am able to explain them now. I can look back and see all the things that have happened that were supposed to make me feel good about myself and my life. I focus on them while throwing myself into the hard work of day to day living. And before I know it, I am feeling good again, and in the process I have handled some stressful situations in a positive manner instead of running away as we are all apt to do when things feel bad or hard.

It is the evening times that are still the hardest. This is when my little one wants to nurse and nurse and nurse before falling asleep for the night. And I am alone in a dark room with nothing but my thoughts and feelings. I am supposed to be treasuring the snuggles and the quiet time and instead I am ready to run away screaming.

Generally it is all getting easier to handle as I am learning my own tricks for coping and am able to explain it away, but there are still these very hard times and further more, as a breastfeeding counselor I am feeling very frustrated at the numbers of women suffering through, or weaning because of this problem. A problem that seems to have no answer.

Who Knew?

The one thing I could find online that the average breastfeeding mother would be able to possibly fins and read was this: (underlining mine)

Nausea when breastfeeding
By Kelly Bonyata, BS, IBCLC

A small percentage of moms report nausea during a breastfeeding session in the early weeks of breastfeeding . It goes away for most (but not all) moms by the end of the 6th-8th week. If nausea during breastfeeding begins when baby is older, consider the possibility of pregnancy.

Nausea that occurs with the milk let-down may be related to the release of oxytocin. Oxytocin is the hormone that causes the milk ejection reflex (MER or let-down), and it also helps make digestion more efficient and is associated with other gut hormones that can cause nausea. According to Dr. Ruth Lawrence (author of Breastfeeding: A guide for the medical professional), the nausea described has been compared to the nausea of pregnancy that comes in waves. Symptoms are similar to low blood sugar: nausea, headache, hunger, etc.

Other symptoms during let-down: Some mothers experience itching (usually of the breast or underarm area) during letdown; this may be due to the increased blood flow or a response to oxytocin release. Hormone-related headaches or feelings of depression (or anxiety, agitation or anger) during let-down can also occur on occasion.

Other then this one line buried in a breastfeeding help website, any mother feeling these feelings would feel completely alone.

Exploring Oxytocin Levels

I got on to the computer and started reading about oxytocin, despite how little was known about it. I wasn’t out to do great scientific research; I just wanted to be able to understand it for me. Going on the assumption that it was an oxytocin problem, I came up with a theory that made a lot of sense to me. First of all, most of the time, during the day I felt good, even great, sometimes giddy. That was the oxytocin doing its work. Since when I nursed the oxytocin levels went uncomfortably high, that meant that the rest of the time they must be higher than normal. The warm, fuzzy, friendly high levels that most mothers only get with nursing/ orgasm /exercise /cuddling etc., I was having most of my normal day! Then when I nursed, the oxytocin went even higher, to the “bad place.” Now, there is no definitive research on too-high levels of oxytocin. I found one study that researched oxytocin levels in non-lactating woman that stated: “…in contrast, higher basal levels of oxytocin were associated with greater interpersonal distress.” I know this is an out of context quote, but again my research is far from scientific - it’s personal. To me, the study and its brief mention on interpersonal distress made sense.

Then I read about oxytocin in the nursing baby! The revelation I made in one explained why my baby was so very content: “Although baby makes her own oxytocin in response to nursing, mother also transfers it to the infant in her milk. This provision serves to promote continuous relaxation and closeness for both mother and baby. Persistent regular body contact and other nurturing acts by parents produce a constant, elevated level of oxytocin in the infant, which in turn provides a valuable reduction in the infant's stress-hormone responses. Multiple psychology studies have demonstrated that, depending on the practices of the parents, the resulting high or low level of oxytocin will control the permanent organization of the stress-handling portion of the baby's brain-promoting lasting "securely attached" or "insecure" characteristics in the adolescent and adult. Such insecure characteristics include anti-social behavior, aggression, and difficulty forming lasting bonds with a mate, mental illness, and poor handling of stress.” So my baby was getting higher levels of oxytocin from me, too! But hers didn’t seem to be so high to cause her to land her in the “bad place.” She was living on a sweet oxytocin cloud that kept her relaxed and at ease!

Next I found a bit about my increase in OCD behaviors: “Attention has recently been focused on central nervous system neuropeptides as potential mediators of the symptom profile of obsessive-compulsive disorder (OCD). Increased CSF levels of the anxiolytic neuropeptide oxytocin have been reported in OCD.” What’d ya’ know? Amazing what some out of balance hormones will do to you!

Nearly all of what has been going on has now been explained away, except for the periods where I felt like I was lingering in the “bad place” too long, longer than normal - a whole day even. I went back to thinking about oxytocin levels. It’s not just nursing the increases them: “Some activities that will help you produce more oxytocin: meditation, connecting deeply with another human being, yoga, exercise, massage, worshiping, loving a pet, participating in a group that you enjoy, engaging in loving sex, singing, dancing, gardening, volunteering.... You can certainly add your own favorite, replenishing activities. Highest on the list would be loving connections with intimate others, from partners to children to friends. Quite simply, we produce oxytocin when we feel love.” Aha! When everything was going well, like on a weekend, when my husband and I had date night, when he was around to help with the kids, and we were having nice family time, and I had extra time to exercise, when there was more physical intimacy in my life….the oxytocin levels STAYED up in the “bad place!” It was when there were all of these positive things not balanced out by usual amount of stress, that I would have “off the charts” oxytocin levels leading to problems.

So now…what to do about it all?

The “Opposite-Oxytocin" Effect

One of the women who had responded online had a relationship with her practitioner, and felt comfortable going to her and talking about this strange unheard of thing she was experiencing. The practitioner took her seriously and tested hormones levels. This was because there are two hormones that spike at the time of breastfeeding/letdown, prolactin and oxytocin. The test came back with oxytocin levels off the charts. This didn’t surprise me all this much. Because of the timing of the problem it had to be breastfeeding related. The only thing that changes in your body when you breastfeed is hormones. Two hormones are involved in breastfeeding: prolactin makes the milk, oxytocin moves the milk. Prolactin levels being off, either low or high, is a well documented problem; it is most often a fertility related problem, which is one reason perhaps why there is more research on it. And since milk is always being made in a nursing mother’s body, the levels are going to be lower or higher at different times anyway, not just when she nurses. Oxytocin on the other hand isn’t as well researched as prolactin and its purpose isn’t as significant. It is just the warm and fuzzy bonding hormone that everyone has (although it is higher in women than in men and even higher in mothers.) Oxytocin is also responsible for letdown. It is what moves the milk from the back of the chest to the nipple. A quote from wikipedia says, “Letdown reflex – in lactating (breastfeeding) mothers, oxytocin acts at the mammary glands, causing milk to be 'let down' into a collecting chamber, from where it can be extracted by sucking at the nipple. Sucking by the infant at the nipple is relayed by spinal nerves to the hypothalamus. The stimulation causes neurons that make oxytocin to fire action potentials in intermittent bursts; these bursts result in the secretion of pulses of oxytocin from the neurosecretory nerve terminals of the pituitary gland.”

And again, Oxytocin is supposed to be the feel good hormone. It’s the love hormone. Again from wikipedia, “[oxytocin] is a mammalian hormone that also acts as a neurotransmitter in the brain. In women, it is released in large amounts after distension of the cervix and vagina during labor, and after stimulation of the nipples, facilitating birth and breastfeeding, respectively. In humans, oxytocin is thought to be released during hugging, touching, and orgasm in both sexes. In the brain, oxytocin is involved in social recognition and bonding, and may be involved in the formation of trust between people and generosity.” So why is it that it has the opposite effect for some of us? Or as one mother says, “Oxytocin is the "feel good, warm fuzzy" hormone that is related to breastfeeding. Apparently this particular hormone hates us.” But our problem actually seems to be because our oxytocin is on overload; it is too much of a good thing. After months and months of personally dealing with this I took it upon myself to figure out why this happens. It was during a time of frequent evening nursing for me, when my baby was nursing so often in the evening that I couldn’t escape the distress it was causing me. I was ready to give up and wean. And being a lactivist and lactation counselor myself, I knew it had to be pretty bad if I was ready to wean. And there are others experiencing the same thing. It was time to deal with it head-on.

Emotional “Letdown”

I had a perfect planned homebirth for my third child, a daughter, named Eliot. I had nursed my previous two children a combined 29 months without any problems, and planned to do the same with this child. I had a very relaxing postpartum period with lots of support from family and friends. But fairly soon into this postpartum period I began feeling a frequent “yucky-ness.” I had nothing to connect it to. It was sporadic. I figured maybe it was just the coming and going of baby blues.

A few weeks further in, I decided I needed to look into it more and at first considered it was possibly just postpartum depression, but I felt that it was unlikely. Because of my support system and the nature of my birth and postpartum period I knew I was in a low risk category for depression. But something was “off.”

What I was experiencing, about 10-15 times a day, was a sickening hollow feeling in the pit of my stomach. There would be a strong aversion to food. I wouldn’t feel sad, but I would feel “icky and yucky” and pretty hopeless and melancholy. I sometimes would feel down right suicidal for a passing moment. It was a feeling I seemed to have associated with strong feelings of worry and guilt in the past, because when I first started experiencing the sensation I kept searching for what I was feeling guilty or worried about. It turns out there was nothing; it was just that same sinking feeling in the pit of my stomach that I had experienced in the past for other reasons. It would last for about one to two minutes every time, which sounds very brief, but it was so overwhelming that it would grab my attention from nearly anything I was doing. I would end up needing to focus my way through it, nearly like I needed to for a contraction during labor. The rest of the day I would be fine, in fact sometimes I was great, even giddy maybe, on some emotional high. Could I be manic depressive? At the same time I also had an increase in some of my more OCD tendencies. Then there were days where I would feel very, very low all day, for a whole weekend sometimes, I would be ready to call the doctor and get medicated when I then I would pop right out of it. It wasn’t making sense.

As I was perusing online forums for PPD there was a thread entitled “Only When Nursing.” I saw it day after day and never looked at it. After all, what I was feeling wasn’t only when nursing. Finally I decide to click on it and read it; I figured that as least because I was a lactation counselor it would be a good thing to learn about. Depression only when nursing was nothing I had ever learned about in all my training and though the forum wasn’t of a professional nature, if there were moms experiencing it, I figured I should learn about their experiences. So I opened the thread and read about dozens of other woman feeling the same thing, most of them never having talked about it until then. But for these women it was connected to breastfeeding. I had never made that connection for myself. Then I realized that in my experience it was related to letdown, which for me, happened not only when breastfeeding, but many times throughout the day in-between nursing as well. I started noticing that about 30 seconds before my milk letdown, this intense “emotional letdown” happened. It was amazing to hear the words of these women explaining with their own words the exact same bizarre feelings I had been having. But there seemed to be no diagnosis. Many women just said, “Yes, that’s me, it’s horrible” or “I thought I was all alone” or “It finally went away when I weaned; I couldn’t take it any longer.” I was wondering, is there anyone who knows why we were all going through this nightmare every time our milk lets down?