A child with migraine: mom’s perspective

The new series continued “Migraine. As told from the other side.”

Today I continue with my new post series called “Migraine. As told from the other side.” The series is meant to shed light on how migraine impacts all of our close relationships including being a parent to a child with migraine.

A child with Migraine. My mom’s perspective.

For this interview, I sat down with my dear mom to ask her what it was like to be a parent of a child with migraine. For a little context, our family immigrated to America from Kazakhstan. It was part of the Soviet Block until it fell apart in the early 90s. Medicine was pretty basic and when I was a child during the 80s/90s, there was little awareness of this complex neurological condition and migraine-specific medications were not available in our country.

I was also misdiagnosed for many years which added to the agony and our family life’s challenges. My mom has always been my biggest advocate and cheerleader! I am incredibly fortunate to have a mom who was very progressive and relentless in her pursuit of answers to my suffering and the protection of my rights all around.

What do you remember about some of my first migraine attacks?

Your grandma called me at work unexpectedly. She told me that you came from school and were complaining of a very bad headache. So, I left work and came back home to see what was happening. You didn’t have a fever, but your head was hot and it felt like all your vessels were throbbing under my hand.

You were so cheerful as a child and all of a sudden you started to have these headaches. I was stressed and worried because it was new and you were not like your usual self. This continued on and I took you to the doctor.

What was available in terms of care and doctors? What did they say?

I took you to your pediatric doctor first. They said you likely had an increased intracranial pressure after the flu and that we needed to strengthen your vascular system. They prescribed pills and you started to take them, but you continued to have really bad headaches weekly.

Then, we went to see a neurologist. Several in fact, because the first few didn’t know what was going on. One of them prescribed antiepileptic drugs that made you have side effects, but there was no diagnosis. Your digestive tract was taxed with drugs but nothing helped.

This started a phase of never-ending doctor visits on a quest to what is wrong. And many 911 calls and ER visits as your attacks worsened. One week you had a 6-day-long headache.  This was going on for like 3-4 years.

Another doctor told us that you have severe inflammation of matters that surround your brain. She gave you such strong antibiotics that you became severely ill with uncontrolled vomiting and diarrhea. Your digestive tract was wiped. Yet headaches continued.

How did you feel during that time?

My life was upside down. We lived from attack to attack. No sleep at night because a lot of your attacks happened at night. Everything was in chaos. Plus, you needed to go to school. Your dad and I tried to make sure you got some of your missed classes covered at home. We tutored you in all subjects. I was constantly worried. And I went to school a lot to talk to your teachers so they don’t treat you poorly.

I cried a lot during that time. But I didn’t show it to you so you would not lose hope for better treatment.

One day I came to a realization that when you don’t have a headache, you really excelled in your music and regular school. So, I continued to encourage you to do your homework and do your best in between attacks. I believe that allowed you some level of normalcy and didn’t make you feel as though you can’t achieve anything due to this health issue.

How did you ultimately get me to a place of proper diagnosis?

I started to ask everyone if they knew better doctors in the larger city. After a long period of searching, someone suggested Dr. Wein and a neurology clinic in Moscow. I bought tickets and we flew there.

You spent the day there undergoing some tests, imaging. Then the doctor took you to a Concilium of Physicians. There were probably more than 20 doctors in a large conference room.

You were asked dozens and dozens of questions. How your pain starts, which side of the head it is often on, if you are seeing any visual lights or having blind spots in your vision during or before the headache, what makes it worse and what makes it better.

I could not figure out why they were asking you all of those things. When Dr. Wein finally talked to us 1:1, he said: “You have an incredibly articulate child. She described her disease to a tea. As if from a textbook.” Then he said you have a migraine with aura. And started to explain to me what it means.

He also said that people figured out how to go into space, but have not found a cure for it.

Did you know what a migraine was?

Not at all. I was super surprised to hear the word “migraine” and had zero knowledge about it before that day.

What did Dr. Wein recommended at that time in terms of treatment?

He explained that it was a neurological condition and all the symptoms associated with it. That I needed to start a journal of the food you eat, smells that trigger you, and other factors that could cause an attack. He gave me a list of foods to monitor and see if any of those trigger your attacks. He also gave me a list of steps to take to take care of you when you have a migraine and a list of steps to do to prevent one.

When we got home, I started reading everything I could find about migraine in your brother’s medical school books.

Did you believe the diagnosis?

I didn’t believe him right away because we had so many diagnoses before. But everything he recommended was working when we tried it. It made me realize that finally, this was the accurate diagnosis.

For example, he told us to turn off bright lights when you have a migraine and in general avoid bright lights, super noisy environments, and strong smells. I would turn the lights off, turn down any music or TV and these small steps would make you feel better.

Same with scents, noise, and overstimulation. I also noticed that certain foods from the list he gave me made you feel worse. It all started to make sense.

How did it feel to finally have an accurate diagnosis?

I started to feel more hopeful. Because the books said that you can live with migraine for a long time. The doctor also said that we could take measures to manage the attacks despite the fact that there were no migraine-specific acute medications.

There was also a small hope that we can find a cure someday. We switched from the search for diagnosis to the phase of making many life adjustments to learn how to live with it.

Did you start seeing these other symptoms that I experienced? I just don’t remember much of it, other than the suffering itself.

Yes! Definitely! I started to see your aura symptoms. Your veins on your forehead and temple would pulse and those days you had an attack. Usually, you looked paler and had super cold hands and feet before the migraine. You also said that you had a weird feeling around you like you had a tingling feeling in your arms at times and felt anxious too.

What was the most surprising to you about migraines?

That you turned out to be such a fighter! You were super skinny and petite for your age. This condition is brutal on a young child. During the attacks, you fought as best as you could. You were flat as a sheet of paper during those migraine attacks. But then when your attack was over, you wanted to push through and continue with your music school and school work. I was surprised at your determination!

You continued to excel academically. Also, you became very creative. Creativity may be the good side of that horrible migraine coin. When we started our own mom-and-pop business, it needed a logo for the business cards. And you made a nice logo for us.

In my opinion, migraine shaped your character to a large degree. It made you even more resilient! And you were strong-willed before migraine! LOL.

What is the scariest part of having a child with migraine?

That you cannot take your child’s pain away. There were hardly any options for pain relief specific to migraine. As a parent, I was seeing my child suffer and couldn’t help. You are ready to do anything as a mother. But back then only ER could help with an unmanageable attack. We spent a lot of time in ER.

What stigma did you see toward me and yourself because of migraine?

The teachers told me you are making this up to skip school. They said you looked just fine. I constantly had to stand up for you in the school system. And you were a 4.0 student. It was shocking that you were treated this way while being a great student, kind and caring toward others.

There was no sympathy. We had no help from anyone. I felt like I had to break through walls in order to help you. During your finals, I sat in the hallway with medications, ready to go in case you developed an attack in the midst of the tests. The school said that if you don’t pass the exams, they will not give you the certificate of completion of school.

What advice would you give to someone who has a child with migraine?

The love of a mother will overcome just about anything. Your love will make your child feel understood and accepted.

Patience toward life that is unpredictable and limited. We hardly went out or received guests, very little social life. Because it was hard to predict if you were going to have an attack. Also, at that time, child caretakers didn’t know how to take care of a child if they had a migraine attack. So, we couldn’t really leave you with anyone for a prolonged period of time. However, we accepted all of this as part of our life and learned to enjoy what we have.

Don’t stop looking for solutions. There is much progress with medications and treatments. We lived in a third-world country and had no access to good healthcare. But we continued the search for answers. Never give up.

Be proud of your child for fighting through something like this. Tell them you are proud of them.

Become your child’s voice and their biggest advocate when their voice is not heard. Educate their school, teachers, and other families about this disease any chance you get.

Does migraine make me different from other people in any way? If so, how? If not, why not?

Yes, you are super creative, you see solutions that others don’t. But most importantly you are so kind to anyone who is sick or has any kind of health issue. You help with words, with deeds, with resources. This is a huge quality you have.

If you could ask me any questions about my migraine journey, what would you ask about?

Do you believe that at any point in time in the future you will be migraine free?

Do you want me to actually answer that question?

Yes.

Here we go!

I do believe I will be migraine free one day in the future. The reason I believe that is because there are finally some breakthroughs in the field of migraine medicine. In particular with CGRP therapy introduction. We are closer to solving this problem than we have been in the last 50 years.

Before CGRP, there were no migraine-specific meds for prevention. Until triptans, there were no migraine-specific medications even for acute management. Imagine, it is like having no antibiotics in the 1700s for many diseases.

With these new discoveries and a deeper understanding of how migraine develops, we will be able to manage migraine well. I am looking really forward to that day. Thank you for sitting down with me and sharing your honest perspective.

Summary:

This interview with my mom was super emotional for me. My family gave up so much to help me cope with this debilitating condition. I am fortunate to have such a supportive and actively involved family!

My biggest takeaways are:

1. Be the voice for your child when their voice is not heard! Check out https://www.migraineatschool.org/ for educational resources tailored for teachers and parents.
2. Make sure you get the correct diagnosis. It is critically important to get on a road to recovery and improvement in the quality of life for everyone involved!
3. Talk to your kids about their experience of migraine! The complexity of migraine experience for children is vast. There is pain and suffering, stigma, rejection from other children and from adults, mistrust, and at times complete lack of basic human empathy. By talking to your child regularly, you will always know where they are emotionally and prevent potentially tragic outcomes. Depression, anxiety, and a higher risk of suicide are all part of living with migraine.
4. Take some time for self-care! I had no idea my mom never took the time to take care of her needs! Knowing the amount of her sacrifice, I encourage anyone taking care of someone with migraine to make sure you don’t do so at the expense of your own health.

As a child with migraine, I remember a lot of care, understanding, and love. I also remember how fierce and unstoppable my mom was when she stood up for me on dozens of occasions! She joined me in my fight and she is still a force to be reckoned with. Unbelievable dedication and love! Thank you, Mom!