My daughter will be nine this month. I went outside to ask what she would like to add to this letter to moms with migraine. She was standing on the edge of the pond her grandfather built holding a giant net. She said “Definitely you must tell them……..SHHHHHHHHHHH!!!!!!!…”. There were bubbles coming to the pond’s surface. It could be a frog. All other thoughts were lost. An hour later she came to tell me that the secret to being a mom with migraine is “MOVIE PARTIES”. My son (age 6) was unavailable for comment – due to a crawfish emergency.
I get bored of saying it, but for anyone who has not read or heard of my history previously. I had daily migraine (which caused me to have complex regional pain syndrome – feels like burning fire 24 hours a day, seven days a week) from age four to age thirty. Then through my science/medical education and a TON of mental, physical, and emotional effort on my part – I became episodic, instead of chronic.
I was married fourteen years before I had children. I’m not alone. Nearly 3% of respondents with migraine in a recent study reported delaying having children or having fewer children because of their disease1. I had assumed I would never have biological children – I was too sick. I mentioned the idea of becoming a mother only once in a doctor’s office. My providers looked at me like I was an alien. I knew why. The effort they had to put forth just to keep me alive was profound. Talk of pregnancy was ludicrous to them. At that time I was very underweight and the migraine-related nausea and vomiting were a health concern. I had had ten (or so) cervical rhizotomies (nerve ablations) to slow the migraine pain, and I would have five more. Not because my providers thought that rhizotomies were a great option, but because they were out of options. I had been this way since I was 4 years old, I had tried everything, and my future was bleak.
How I became well enough to eventually have a child is too long of a story. The fact is, I did somehow find myself nine months pregnant and at a healthy weight. But I still had terrible head pain, and even went blind for three minutes before having a C-section at 38 weeks of gestation. This was earlier than originally planned because according to my obstetrician I “did not look well” and I finally told her that the pain was “significant”.
Boom. Out came a perfectly healthy and beautiful baby girl. Two years later, a boy showed up with a blonde mohawk. The umbilical cord was in a knot and wrapped around his neck. He didn’t breathe for what seemed like forever. When he finally cried, everyone felt safe enough to look at him. His father said, “Does he have a head of blonde hair????” I said, “I knew he was blonde, I could see him somehow”. Now, after 20 years of marriage to the man who took care of me through all those years of illness, I am considerably healthier, and a single mom of two.
Here’s the thing. I hid my illness for more years than I can count. I hid the pain, the vomiting, and the vertigo. I even hid one migraine-related seizure that stopped me from breathing. Now there are two perfect little souls looking to me to shape their world. Being a parent at all with migraine makes you a superhero. Some moms have taken care of their babies with colic (likely caused by their familial migraine history), while having migraine themselves2. This is something even I can’t imagine. I just pour love on these moms when I meet them. Because they are in the midst of a battle that they NEVER SEEM TO GIVE THEMSELVES CREDIT FOR. Some of us are living with the pain and stress of caring for our children with migraine, while also caring for ourselves. Or we wonder if they will someday be sick like us.
Those of you who are familiar with my writing know I like to pepper it with scientific references. But on this particular topic, science only gets us so far. The studies that are available in this area are well done and are carried out by some of my favorite people who are very capable scientists. One asked adolescents about the impact their mothers’ migraine has on their lives. Children aged 11-17 reported that their parents’ migraine negatively impacted their overall well-being and their relationship with their parent. This effect was worse if the parent had chronic migraine vs. episodic migraine.3 But as a scientist myself, I feel that not all things are easily measured. What if we looked at this from an entirely different angle? Is it possible there are benefits of having a mom with migraine that we just have not yet measured?
Motherhood, love, and the positive impact of a powerful, resilient, maternal figure who repeatedly shows her children how to OVERCOME is not easily quantifiable. Things that are not easily quantified do not get measured or studied. This does not make them less important or less powerful. Is it possible that our children could be learning resilience from us? Could they be learning empowerment? If they were, could we measure it? Perhaps could we not only accomplish positive effects in our children from this illness but reproduce them across families with migraine?
Recently I was talking to one of my strongest and most beautiful migraine warrior friends. Even she became sad when she would discuss motherhood and her children. Being a mom with migraine who also experiences depression has obviously been difficult for her. I know her children. They are teenagers now. Her children think she is a GODDESS INCARNATE, they look up to her. Her teenagers pull their strength from HER and they are absolute visions of awesomeness. Since the first time I met them I’ve been enthralled, wondering who they will become, the imprint they will make on this world. I see it in their faces: their path is forged by watching the strength of their mother in her struggle with migraine and chronic pain. Please my fellow warriors, never sell yourself short on this fact. It is the strength and power bred by your migraine journey that your children see and follow. Even when you are not aware of how amazing you are.
In our house, mommy is a superhero. Yes, I still downplay a lot of my pain, and perhaps they should be aware of more than I show. But my kids witness the worst of it. They are young, but they brought me dinner once and tried to bring me breakfast a couple of times (adorable, messy, scary, would bring any mother out of a coma to protect her carpet). But when things get too bad, we all crawl into mom’s bed, and we watch superhero movies. They call them “MOVIE PARTIES”, and they have even learned to make the popcorn themselves. We are Marvel maniacs. I dare you to start a conversation with either of my children about the Avengers – make sure you have 20 minutes to spare. Be prepared to be a victim of whatever superpower they feel they woke up with that morning. Why? Have you ever heard of a superhero who did not endure more than the average human allotment of pain and overcome extraordinary odds? All migraine moms are superheroes, and their children are the next generation of superheroes. Call me crazy, but this is how I see all our families.
This imagery flows so naturally into the minds of our kids. They see the strength in us. Never doubt yourself as a mom with migraine. You overcome more to just get out of bed than most people overcome in their week. This knowledge alone should make you feel empowered every time you open your eyes and see the ceiling above you. Literally – that ceiling, or wall, or whatever it is you see when you first open your eyes, should invoke strength in you. You are strength incarnate – never downplay what you have overcome. Your children are SO LUCKY to have you as an example.
Migraine is a thief, and its negative effects are always with us and our families. If we question our children about these negative effects they are easy to remember. My daughter says my migraines are “super sad”. But when I re-worded the question to: “What good things have you learned from having a mom with migraine?” This is what she said: “We watch more movies together, and we learn to be superheroes”. My son said “Your migraines make me tougher, more like IronMan. Makes me feel good for mommy once she beats it and it makes me want to love her more”.
While I love and appreciate the science that has been carried out so far in this area, I can’t help but wonder what we would find if we set out to look for some positive outcomes in the children of moms with migraine. If we could measure empowerment, individuality, self-efficacy, problem-solving abilities, etc. Or if we could ask them what they thought of their mothers as role models. Perhaps ask your kids some of these questions this week as a Mother’s Day gift to yourself.
Moms with migraine: celebrate yourselves on Mother’s Day, and don’t hold back. Your children see that you are constantly tested and that you are pulling through for them. Sending loads of love on this Mothers’ Day. You are truly amazing, stronger than even you can see. Your kids love you for it and they will forge a better journey for themselves because of it.
1 Buse D. Fanning K, Reed M, Murray S, Dumas P, Adams AM, Lipton RB. Life With Migraine: Effects on Relationships, Career, and Finances from the Chronic Migraine Epidemiology and Outcomes (CaMEO) Study. Headache. 2019 Sep; 59(8):1286-1299.
2 Gelfand A, Buse D, Cabana MD, Grimes B Goadsby P, Allen E. The Association between Parental Migraine and Infant Colic: A Cross-Sectional, Web-Based, U.S. Survey Study. Headache 2019 July; 59(7):988-1001.
3 Seng EK, Mauser ED, Marzouk M, Patel ZS, Rosen N, Buse DC. When Mom Has Migraine: An Observational Study of the Impact of Parental Migraine on Adolescent Children. Headache 2019 Feb; 59(2):224-234.
Originally Published on April 30, 2020 at the Association of Migraine Disorders: https://www.migrainedisorders.org/moms-with-migraine/