10 Things I’ve Learned Through Navigating Chronic Migraine Alongside My Daughter

We can navigate through any storm with grace, compassion, understanding, and plenty of laughter.

My daughter was 7 when she first began complaining about headaches. With our complicated medical history, I immediately took it seriously.

I have lived with migraine most of my life and know it can run in families, so I took her to see her pediatrician who referred her to a neurologist.

Today, at 13 years old, she also lives with chronic migraine. Being in this together allows us to support each other in a world that’s not always easy for people living with chronic health conditions.

With both of us experiencing migraine, we’ve learned a few helpful things along the way.

Join the free Migraine community!

Connect with thousands of members and find support through daily live chats, curated resources, and one-to-one messaging.

Sign up

We avoid our known triggers

We’ve learned to avoid triggers when possible. Bright lights, loud or repetitive noises, changing weather, stress, and some foods can be culprits. Avoiding triggers can often prevent the headache or help relieve it once it starts.

Every day, we keep track of our migraine episodes and what we’re doing when they begin. This has helped us learn our patterns and triggers to avoid in the future.

We need to conserve our energy

We’ve learned to conserve energy. If we have an excursion one day, we have to make time for rest the next day. If we don’t, we end up running on empty.

With no recovery time, our bodies tend to spiral into accompanying symptoms, like blurred vision, nausea, and severe fatigue. Planning ahead helps us avoid experiencing these symptoms.

I try to keep our medical information organized

Treatments are evolving, and we’ve had to find what works best for us. I keep a folder for each of us with our current diagnoses, medications, past surgeries, and known allergies. This is helpful for scheduled doctor’s appointments and emergencies.

I do my own research, but I listen to our medical team. The emergency room is the most difficult place to treat a chronic condition, so I try to stay out of there whenever I can. Being prepared makes a huge difference in how the visit goes.

We don’t have to listen to other people’s advice

As we struggle with symptoms, some friends don’t know how to react. People often mean well and tell us about different treatments they’ve tried.

We sometimes have to gently remind them we have a trusted medical team and are taking their advice. The best thing you can do for a loved one with migraine is support and listen to them instead of offering alternatives.

Isolation can cause depression, so we built a village around ourselves

It’s hard to go places when we don’t feel well, but feeling isolated is an issue itself. We never know when symptoms will hit. There’s a delicate balance between getting out of the house and taking care of ourselves. This means turning down many invitations, which can be frustrating for friends and family.

I’ve learned it’s OK to turn down or cancel plans. We have to make our health a priority.

Some friends drifted away, but we’ve found our group. I’ve found people often want to help but don’t know how. It helps to create or join an online group where you can post important health updates and ask for help when needed.

I can help my daughter through school by being her biggest advocate

One of the hardest parts of this journey has been keeping my daughter in school. Working with educators is a group effort, because they don’t always know how to help her. We’ve developed a health plan and an individualized education plan (IEP) that have accommodations to help her function.

Even with these in place and medication available at school, there are often days when she can’t manage and needs to come home.

Kids have rights and can exercise them

Last year, after countless surgeries, procedures, and tests, my daughter decided she’d had enough. She refused all tests, appointments, and medications.

It’s taken her a year to decide she’s ready to be treated again. This time, it’s her choice, and it’s given her a better sense of autonomy over her life.

I had to get used to the idea that life isn’t fair

Being constantly told how strong I am has been difficult. I was never given a choice. The medical system is frustrating and hard to navigate. Headaches don’t stop for stress, grief, hunger, holidays, or anything else in life. Three years ago, I had brain surgery 2 weeks before Christmas.

Learning to accept the unfairness of it all and teaching acceptance to my daughter has helped us both try to stay positive.

It’s OK to occasionally have a pity party, but we don’t live there. Life isn’t fair, but I believe life is 10 percent what happens to us and 90 percent how we choose to react to it.

Self-care is important for both of us

It’s often the small things, like a bubble bath, comfort food, or a long chat with a friend, that make a difference. I have to remember to refuel myself, so I can better care for my daughter.

When I’m able to manage it, I take a trip to the coast to clear my mind. I’ve learned this time away helps make me a better parent. Finding things that bring her happiness is just as important.

When living with constant discomfort, you have to find things that rejuvenate both your health and your soul.

I try to make hard times seem like an adventure

I teach her there’s a positive side to everything. Staying somewhere new can be fun. I make these adventures easier by making sure she has everything she needs and the people caring for her know how to deal with her migraines.

I leave doctor information, medication instructions, a list of triggers to avoid, and how to handle a headache once it starts. I make sure she has tools to help with her anxiety. Some people with chronic migraine go to therapy to learn how to cope with their pain.

She knows I’m only a phone call away, and I can reassure her whenever she needs me. I have always let her know that she can tell me anything, and I’ll be there to listen when I need to listen and give advice when she asks for it. It’s important for her to feel like I am on her team, and we’re working through this together.

The bottom line

I’ve taught my daughter that, even though chronic migraine might be challenging and life isn’t always perfect, we are perfect just the way we are.

We have our village and we have each other. We can navigate through any storm with grace, compassion, understanding, and plenty of laughter.

No matter what happens, we will still be living our best lives. Learning how to stay positive and accept difficult circumstances is the best thing I’ve done for myself. The most important thing I have ever taught her is that together, we can get through anything.