When The Migraine Monster Touches Our Children: Part 2

One of the saddest aspects about migraine from my perspective is that it doesn’t discriminate when it comes to age. In part one of this article, I mentioned the devastating realization that I’d passed the disease onto at least two of my children. Since my own earliest childhood memories are of having incapacitating attacks, I was no stranger to what they were experiencing. However, as hard as it is for an adult to live with it, trying to navigate childhood migraine brings its own unique set of challenges.

"It was scary because I didn't really understand..."

I recently sat down with my oldest son, Joel, and talked about how migraine has impacted his life. What it was like growing up not only watching me in pain, but then dealing with it himself. Diagnosed when he was just 9 years old, Joel’s migraine attacks quickly escalated from “flashy lights” to incapacitating pain on an increasingly regular basis over the next few years.

His description of a migraine attack is one that we hear frequently. “I didn’t want to do anything except turn the lights off, go under the blankets, and sleep. It felt like my head was pounding and literally going to explode. I was so irritable because it felt like I was in pain all the time, and it was scary because I didn’t really understand what was going on.”

As Joel reached his teen years he was faced with frequent, debilitating migraine attacks. He became a well-known visitor in our local emergency room, as well as multiple hospital admissions. His pediatric neurologist even set up a “fast track” process for us to bypass the ER so he could get quick, effective treatment. The lack of understanding about when or if this was going to end was often frightening. Frightening not only for me as a parent, but also for my son!

Navigating school, activities, friends

Living with migraine as a child brings with it fear of the unknown. However, it also includes the frustration of trying to navigate school, extra-curricular activities, part-time jobs, and friends. Our children may well be asking questions that are hard for them to verbalize, but which seriously impact their behavior and thoughts:

• How can I learn to manage when stressed out and afraid?
• What can I do to stop this pain, nausea and other crazy symptoms?
• How do I explain this to my teachers? My friends? My sports coach?
• How am I going to keep up in school?

Too often it is hard for children to talk about what they are going through, and especially how they feel. Joel admits: “I didn’t tell most people about what was going on because I didn’t feel like there was any way they could understand. In fact, most of my friends STILL don’t know I have migraine!” Simple things become very hard, and what is considered normal may no longer be feasible, at least for a while.  Open communication becomes essential, even throughout the teen years when talking about feelings so often deteriorates into an obstacle course with hazards at every turn!

Bitter-sweet memories

Interestingly, one of the strongest memories both Joel and I have is bitter-sweet. “I’ll never forget the day my mom was most willing to share her food with me!” he says. “I tended to steal food from her plate when I was younger so she would guard it zealously! But one time I had a very serious reaction to a medication and was hospitalized for almost a week, completely unaware of my surroundings, unable even to count to ten. The day I finally sat up and said I was hungry, my mom practically shoved her plate at me!!”

I look back at this memory and even now, a decade later, the feelings flood back. The truth is that this was the scariest time of my life! Had I allowed my son to receive a treatment that was going to cause serious and irreparable damage? There was guilt, blame, fear and so much more. I was no stranger to medication side effects myself, but what happened with my son really woke me up to the concept of risk versus benefit. The challenge was figuring that out not only as a patient, but now as a parent too! In reality, it is frequently a balancing act to control the disease while minimizing risk. A balancing act that can seem challenging enough for our own treatment as adults, but which is almost impossible when it comes to our children!

Don’t let migraine define your life!

In the midst of all this – the navigation of medications and our children’s education – we also need to be mindful about helping them cope emotionally. Migraine disease has a “dark side” that goes beyond medical treatment. Joel urges other children and teens: “Don’t let it define your life! There are going to be some things that you simply cannot do. However, you can focus on finding other ways to be optimistic and making the most out of good experiences. It is a treasuring of the good memories rather than being defined by the bad.”

Essentially, Joel is talking about empowerment and a positive attitude. As parents we play a key role in helping our children with that. It’s never too early to encourage them to make wise choices, to speak out, and to learn to advocate for themselves. Life with migraine is so much more than understanding triggers, symptom management and treating an attack. We can give our children a road map to help navigate all of the challenges faced when living with a chronic, unpredictable disease. And that road map can make all the difference as they grow up into young adults, learning to walk the path of life with migraine.

If you lived, or live, with migraine as a child or teenager, what is the greatest challenge you face? What do you want to say to your doctors, family, teachers, friends? How hard is it not to let migraine define your life and what helps the most?