'I couldn't breathe': The terrifying condition that triggers crippling anxiety while breastfeeding

Photo: Sydney mum Cayla Dengate opens up about her experience with D-MER
Photo: Sydney mum Cayla Dengate opens up about her experience with D-MER Photo: Supplied

Have you heard of a condition called D-MER? Not many people have, but it made Cayla Dengate's life as a new mum unbearable. 

Think about the last time something devastating happened, how your stomach felt hollow, breathing fast, a helpless sense that your life was over.

That's how I felt at the start of every breastfeed. I'd be hit with crippling anxiety or a panic attack. Then, 60 second later, the feeling would vanish and I'd feel totally normal.

Photo: Cayla Dengate:  "At the start of each breastfeed, I’d be hit with severe anxiety or a panic attack."
Photo: Cayla Dengate: "At the start of each breastfeed, I’d be hit with severe anxiety or a panic attack." Photo: Supplied

At its most severe, it felt like the worst moment of my life, but it was repeating every two hours.

My low point came one morning. I'd spent a night cluster-feeding my daughter and couldn't breathe. I felt like I was watching the apocalypse unfold. I knew something was seriously wrong. My husband was late to work but I handed him the baby and said I just needed to walk around the block.

I walked and weeped and seriously wondered what was wrong with me. I loved my children. I wanted to be home with them.

But also, how was I possibly going to make it to 7pm when my husband came home from work? How could I breastfeed her again in an hour?

That day I called The PANDA national hotline. The volunteer was kind, and calm. I burst into tears as we talked and she listened. As she ran through a series of questions aimed at identifying post natal depression, it was clear to both of us that wasn't what I had.

'A minute of rage' 

I started googling keywords 'hollow stomach' and 'breastfeeding'... nothing 'Homesick' and 'breastfeeding' nothing. On a whim, I wrote 'let down' and 'bad feeling'. Bingo. A long-forgotten Reddit thread popped up with a woman describing exactly what I had been feeling. It was uncanny.

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And another member left a comment with a name: Dysphoric Milk Ejection Reflex. It's a rare condition that was only named in 2007.

Basically the working theory is that all women have a drop in the hormone dopamine when their milk is 'let down' for a feed — it's our body's way of making more milk. But in women with D-MER, the dopamine falls off a cliff, resulting in feelings of anxiety, sadness and even anger.

I joined a Facebook page for researchers and women with the condition and read every single post. To realise what I'd been feeling was most likely physiological as opposed to psychological felt like being told 'you're not crazy. You're not a bad mum. This doesn't reflect on the moral fibre of your being'. I devoured every post.

'The realisation changed everything'

Women commented that they 'were crying and feeding' and 'they can't do it any more'.

Pregnant women who had DMER with their first child were 'desperate' to find something that might help before their second arrived.

Women spoke of feeling 'a minute of depression' and 'a minute of rage' and 'the apocalypse'. I shared everything. We all did. About how we felt. About what worked - for some, it was antidepressant medication, for others, cutting back on caffeine.

I told myself I would quit breastfeeding if it was still so bad in a fortnight. But everything changed once I had a diagbosis. I knew I could count to 60 and it would pass. I imagined my dopamine dropping off, I focused on my gorgeous child.

The little golden curl behind her ears. Her moony cheeks. The sweet nuzzling sounds she'd make. I did whatever I could to get through that minute. I found what worked for me, but looking back, It was madness to continue breastfeeding.

'You must reach out'

Never had I come across anything so detrimental to my mental health, and it was happening multiple times a day. I had always been a strong advocate of breastfeeding and like so many mums, I held myself to such a high standard. I wanted my second child to have the same period of breastfeeding as the first.

I wanted to do a good job. It showed me how difficult it cam be to admit 'something isn't ok' especially when you're a proud, loving mum and there's a possibility this might somehow mean you're less than 10 per cent smitten with your kids.

This whole experience showed me it's not enough to think your way out of serious anxiety or depression. It's a big reminder for me to reach out when you're not feeling good, and to be there for friends when they're in the grip of anxiety or depression.

So what exactly is D-MER and how rare is it? 

D = Dysphoria which is defined in the Macquarie Dictionary as a state of dissatisfaction, anxiety, restlessness or fidgeting
MER = Milk ejection reflex (the 'let-down')
D-MER is characterised by negative emotions, that occur seconds before a mother's milk ejection reflex when breastfeeding or expressing or with a spontaneous MER (ie milk releasing when not breastfeeding or expressing).

D-MER is very different from Postnatal Depression (PND) or an anxiety disorder. D-MER is associated with negative emotions only with a MER.

The severity of symptoms varies from very mild to extreme. Some describe it as a 'sigh' while others experience severe symptoms of D-MER (eg suicidal or thoughts of self-harm) like Cayla: 

As another mum explained: "If you have read Harry Potter they talk about the creatures that suck the soul out of you and when they are around it makes you cold and you start to focus on negative things and fall into this abyss of negative thoughts - that is how D-MER was for me at times."

What causes D-MER?

According to the Australian Breastfeeding Association (ABA), diagnosed cases of D-MER are very rare. 

"Sadly, because it is not a very well-known condition we can't be certain exactly how rare it is," spokesperson Naomi Hull tells Essential Baby.

The cause of D-MER is also unclear, although one current theory is that it occurs as a result of inappropriate activity of a hormone, dopamine, when the MER is activated.

Research is currently underway to determine the specific mechanisms involved with D-MER.

What should mums do if they think they have it? 

Hull urges anyone who thinks they may have D-MER to seek help, by contacting an ABA Breastfeeding counsellor or the Breastfeeding Helpline or Live Chat.

"If needed further investigation or support can be sought from a Private Practice Lactation Consultant (IBCLC), or a GP with experience supporting mothers with breastfeeding," she explains.

"In some cases just knowing there is a reason for the negative feelings/symptoms can be of great help. Seek support from someone who understands." 

In mild to moderate D-MER, natural treatments and lifestyle changes are often helpful.

"There is anecdotal evidence that stress, dehydration and caffeine may be triggers" Hull explains. 

For immediate help, please contact PANDA on 1300 726 306 (Mon to Fri, 9am – 7.30pm AEST) or panda.org.au
Lifeline -  Call 13 11 14 or lifeline.org.au

Australian Breastfeeding Association - Call 1800 686 268 or breastfeeding.asn.au