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Migraine as early childhood trauma

Some of the best article ideas come from reader responses to earlier posts. Your participation helps keep the ideas flowing. This post is one of those ideas born from reader feedback. Among the comments about the possible link between migraine and childhood trauma, someone shared the opinion that migraine itself can be traumatic for a young child. My gut reaction was, “Isn’t that the truth!”

Possible trauma

Migraine is traumatic at any age, yet there is something uniquely tragic about early childhood-onset migraine.

Colic

There is growing evidence that infant colic may be an early form of migraine. If you’ve ever spent a sleepless night with an inconsolable baby, you probably understand. The excruciating pain of a migraine could easily make me scream all night if I didn’t know what was happening.  When she was 1 week old, my granddaughter started screaming for hours almost every day. She didn’t have any infections or reflux. The doctor’s explanation was colic. My daughter and I were both very concerned. She is now almost 10 months old. The days of four-hour screaming sessions are over, but she is still considered a “high needs” baby. Her little nervous system is very sensitive and we all worry that she might be experiencing migraine attacks. The thought of an infant facing a migraine attack is unbearable, especially when it’s your own child.

Tummy aches

Every kid gets them. A child with migraine will get them a lot. The pain will be severe and vomiting often follows. Many times, children will first be diagnosed with Cyclic Vomiting Syndrome or Abdominal Migraine before the head pain appears.  This was the case with my daughter. She started having Abdominal Migraines when she was two years old. No one believed me. Other family members refused to keep her away from food dyes and nitrates (her triggers at the time) and would not treat her symptoms when they appeared. When not at home, she was left to suffer and told to “think happy thoughts”. Now almost 22, she has a much more colorful vocabulary for that kind of treatment.  I consider those responses to be abusive and medically neglectful.

Lack of understanding

Sometimes people who work with small children really don’t understand Pediatric Migraine because they don’t understand Migraine in general. They view Migraine as something adults get when they are stressed out. So they can’t imagine what would stress a young child to the point of migraine. Typical responses can include suspicions of child abuse, suspicions of mental illness, or worse. Many times they assume the child is faking or exaggerating in order to avoid an activity or gain attention. So their response is to ignore the child or delay treatment.

This happened to me several times a week in elementary school. The bright lights, loud noises, and weather changes were intolerable to my young nervous system. I couldn’t explain it well at the time. All I could do was cry and tell an adult my head hurt.  If I was lucky, eventually I was allowed to visit the nurse’s office to lay down in the quiet dark. But the nurse wasn’t always on duty. Many times the school secretary (a loud woman with strong perfume) simply offered me some Tylenol and sent me back to class.

At least once I week I would get ignored and all hell would break loose. After repeated attempts to get help, the migraine attack would take over. All the color drained from my face. I became cold and my skin felt clammy to the touch. Then my stomach would issue a retreat and everything would come up faster than I could ask for help. Nobody likes to clean up vomit so I faced the teacher’s scorn, my classmates teasing, and a grouchy custodian.

Rarely was I ever sent home. I would spend days in agony under harsh lights with loud noises beating in my head. Everyone swore I was just trying to get attention.

Humiliation

I was “the headache girl”. Other kids kept a wide berth to avoid getting hit by the vomit as I was famous for random puking. I hated recess and Physical Education class. Outside was full of intolerable tortures: bright sunlight, strong winds, blistering heat, freezing cold, rain, snow, the screams of other children, the smell of fresh blacktop, the banging of balls and jump ropes, and that infernal whistle the teacher blew to signal rule breaking and time to line up. Forced to join everyone outside, I tried my best to find a quiet spot where I could hide.

“You’ve got a headache AGAIN?” was the frustrated sigh I heard most often.

In order to get help, I was required to raise my hand, wait to be called on, and then announce my problem loud enough for the entire class to hear. My impulse was to quietly approach the teacher in order to prevent the entire class from knowing that my head hurt for the umpteenth time that week. The pain was embarrassing. Asking for help was unpredictable and humiliating.

My pain was a nuisance, an interruption to tightly-planned schedules, and an inconvenience. As a young child, I internalized the judgments. I was a nuisance, an interruption, an inconvenience. The verdict was clear. I needed to straighten up and act like everyone else. But I couldn’t. I had no understanding of what was happening and was powerless to stop it.

Shame is a powerful weapon that can destroy the fragile self-esteem of a young child. Shaming a child for migraine attacks is abusive.

The prodrome

I was forty years old before I heard the term “prodrome.” Imagine what that’s like for a child. You can’t think straight or put words together coherently. You might be dizzy, irritable, euphoric, or start hearing, seeing, or smelling things that aren’t there.

In my world, I was told that I could control these “behaviors” and needed to stop because my choices were causing migraine attacks. I can see how the mistake could be made. If every time I got upset, a migraine attack followed, then making the assumption that getting upset caused the attack seems rational. But that wasn’t the truth. Bright lights, skipping meals, certain foods, strong smells, allergies, and sleep problems triggered my attacks.  The attacks started by compromising my ability to think and speak. I stopped being able to control my emotions, becoming first manic, then irritable, then crying inconsolably. Within minutes the headache would start.

So I was the “emotional child”, too.  But I really wasn’t. That’s what confused so many adults. Without migraine, I was an intelligent child with really good social skills. Unfortunately migraine attacks hit so frequently that not everyone got to see the best of me.

The hangover

How do you explain postdrome to an eight year old when you don’t even understand it. The pain would subside, so I was expected to return to “business as usual”. That usually meant sending me outside for more fresh air that would ultimately trigger another attack. I was labeled “moody” when I was actually exhausted. My physical body and my emotions were still very raw.

The results

All of these experiences took a toll on my self-image. I was one of the lucky few, I guess. I saw migraine as a challenge – something to beat. So I denied its reality as much as possible, tried to hide the symptoms when they appeared, and forced myself to bounce back into life as quickly as possible. Starting in my teens, I carried out a personal crusade to rid myself of migraine forever. Reality didn’t really hit me until I was almost 40. Migraine isn’t going away. Forced to learn how to live with migraine, I embraced my identity for the first time.

Not every child with migraine responds that way. Many are broken. Their self-esteem is crushed and they struggle with life-long depression, anxiety, or PTSD as well as intractable, chronic migraine.

The challenge

Please, share this story with anyone who works with children. They need to know that how they respond to a migraine child’s pleas for help can make a huge impact. Children with migraine need extra nurturing, understanding, compassion, and validation. They deserve the same quality treatment that we all deserve.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • MargoW
    3 years ago

    Great post. Looking back, I easily see the migraines that my kids had growing up as well as my own. Now that my kids are adults, it’s easier to help them understand the migraines and symptoms. Ive

  • MargoW
    3 years ago

    Oops… I’ve had migraines almost my entire life and getting my parents and friends to understand is still an on-going battle.
    I’m still searching for some sort of relief from the daily attacks that are ruling my life.
    Thanks for sharing your story.

  • yashasri.s
    3 years ago

    Your post is so relatable! I’ve been having migraine since infancy. The pain was so unbearable and accompanied by nausea and eating disorders. After numerous visits to neurologists and MRI scan, it was diagnosed as a migraine.Over the years, the pain has increased thanks to stress factors and a very hot and humid climate. Travel sickness and giddiness have always been a part of my childhood and I used to be the only student in my batch who had never been to a class picnic since travelling by bus is a complete no-no for me. Migraine has always been a deterrent to so many things. Thank you for sharing you traumatic experiences.

  • jns192 moderator
    3 years ago

    Yashasri.s,
    Thanks for sharing your experience. I can relate to both you and Tammy regarding childhood onset migraine. My mom tells me that when I was a baby I would cry for hours on end and eventually cried so hard that I vomited. It wasn’t until a few years ago that I read that this could be an early sign of a neurological condition. I remember having bad headaches throughout childhood but there were significant rough patches during puberty and when I went away to college.

    I also understand how stress, heat/humidity and motion sickness exacerbate the pain. If you are interested, I wanted to share a few articles with you on these topics:

    Keeping Stress Consistent: https://migraine.com/blog/keeping-stress-consistent/

    Fending Off Migraine-Triggering Heat: https://migraine.com/blog/secret-weapon-for-heat-triggers/

    Driving As a Migraine Trigger: https://migraine.com/blog/driving-migraine-trigger/

    I hope you enjoy reading these.

    Warmly,
    Jillian (Rheumatoidarthritis.net Team)

  • Tammy Rome author
    4 years ago

    I want to hug you all! Sure wish we’d been friends back then. We could have started a “migraine club” that met in the dark with Sprite and puke bags for each of us!

  • Jill M.
    4 years ago

    Tammy, thank you for sharing some very painful memories! Hopefully, the negative experiences we’ve all had will motivate each of us to advocate for better care, not only for ourselves, but for the children who don’t know how to voice their own concerns. My brother’s son, who is now 21, began having terrible head pain when he was just 3 years old. He would scream and cry, hold his head in his hands, and rock back and forth. My brother and I, both being migraineurs, immediately recognized that my nephew had inherited our “curse”. They took him to the pediatrician who ordered an MRI to rule out a physical cause, i.e. tumor. Then, bless his heart, the pediatrician diagnosed him with migraines! I am so thankful that the dr recognized them for what they were and treated him accordingly. My nephew eventually “grew out” of them and doesn’t suffer from them anymore; I hope and pray that they don’t return when he gets older.

  • Tammy Rome author
    4 years ago

    I am so happy to hear that your nephew was validated and treated properly so soon. Good for you to recognize it!

  • Ujima Moore
    4 years ago

    Thank you for this insightful article. My earliest migraines began at the age of 8 and would last for days. I never thought of the experience from a mental health perspective but this article really resonates. My mom was great because she suffered migraines from the age of two. To this day I vividly remember the trauma of laying in a darkened room unable to move or sleep. Our migraines were a family affair that impacted everyone as everyone had to assume battle stations i.e. no television noises, cooking aromatic foods and my hyperactive younger brother was forced into “quiet play” when one of us was dealing with an attack. I wasn’t diagnosed until my early 30’s because pediatricians and subsequent doctors insisted I was experiencing sinus headaches despite a family history of migraine. When I think of my childhood, migraines are incorporated into my all of my memories as they were a frequent part of life for us. I was blessed with supportive, protective and understanding parents but experiencing frequent bouts of debilitating pain throughout my childhood was traumatic and did shape my teen and adult development.

  • Tammy Rome author
    4 years ago

    You bet! At home, my family totally understood. It sounds like you home life was a lot like mine in regards to migraine. I definitely shapes you though.

  • Jane O'Neill
    4 years ago

    Oh Tammy I can so relate. I too started in Elementary school w frequent HA ‘s but did not know they were migraines. Many a day spent in the nurses office. It got to be too frequent to her estimation & I was made to feel ashamed. I thought there was something wrong w my ability to cope w daily stress of trying to cope w school wrk when my head hurt so much all the time. It was a vicious cycle. Well I was diagnosed in my early 20’s given fioricet for yrs until imitrex came out. Only thing that has helped me but I believe all the yrs previous taking daily Tylenol & fioricet led to my migraines becoming chronic. It’s been a rough ride but each day I take it as it comes. Some days are wonderful but others are horrid. It is a tough thing to live with but my family & my dear husband have been my lifeline. God bless all of us migraine sufferers! We all have different life stories to tell!

  • arden
    4 years ago

    Did you have to go and make me cry? The emotional memories of being a nuisance and an inconvenience and having self esteem shattered by early migraines can be too much sometimes. Trauma indeed.One reluctantly goes from “getting migraines” to assuming the identity of a migraineur and all that entails. But we shall be good Christians and bear with patience all manner of afflictions with a firm hope that one day we shall rest from them all.

  • Jill M.
    4 years ago

    Amen! Philippians 4:11-13 New International Version (NIV)
    11 I am not saying this because I am in need, for I have learned to be content whatever the circumstances. 12 I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. 13 I can do all this through Him who gives me strength.

  • Lisa Robin Benson moderator
    4 years ago

    Tammy,
    My heart hurts for you and other children who go through severe attacks so young. Though I’ve had migraine as long as I can remember I don’t believe the attacks were severe or frequent until I was older, so I consider myself lucky. I will certainly share this with any teachers/parents or other people I know who work with children. Thank you for writing about it and I hope it helps at least one child be better understood.
    Lisa

  • Anne
    4 years ago

    I am so sorry 🙁 Your childhood sounds overwhelming and exhausting. I was lucky to have a mother who grew up with her mother have weekly attacks, so when my first migraine hit, she knew exactly what it was. I was never stigmatized by my family for my migraines and I’m grateful for that. It’s only when I became older and the migraines went to chronic that I was stigmatized by doctors – “you need to stress less so you won’t get migraines” when stress has never been a trigger. There’s so much patient shaming around migraines. It’s gets tiring standing up for yourself. I guess we’re all coming out of this stronger, right?

  • Tammy Rome author
    4 years ago

    My parents were as awesomely supportive as they could be. My daddy is a migraineur (as are all of his 13 siblings, his mom and all her siblings). They had to walk a fine line because they trusted the schools and doctors. Elementary school was the worst. It got better as I could speak about my symptoms more. I still remember Daddy holding a cold cloth over my head until I fell asleep while the rest of the family celebrated at parties. Great parents, raw deal on the genetic lottery.

  • Luna
    4 years ago

    Thank you for sharing these insights. They are very helpful and insightful.

  • Maureen
    4 years ago

    My son had abdominal migraine which he, thankfully, has outgrown. But his reaction to the first attack was, “Am I going to die?” Obviously this was traumatic for him, and it was for me. At that time, I did not know that my sinus problems were actually migraine. When asked for any family history of migraine, I said there was none. He had these attacks several times a year. Then they became more frequent. He was examined for appendicitis repeatedly. Was his bowel blocked, etc. It wasn’t until several years after his last attack that I was diagnosed with migraine. What really gets me is that the first time I had a full blown attack, I told the paramedics, ER docs and nurses, primary care doctor, and the ENT doctor that I felt like I had an axe in my face. How is it that none of them associated that statement with migraine?!? especially given my other symptoms of fainting and vomiting.

  • Jules2dl
    4 years ago

    As I related in my story (Little Girls DO Get Headaches Dr Aronow!), my pediatrician yelled at me in front of a full waiting room that little girls don’t get headaches, and that I was neurotic. I may only have been 11, but I knew what neurotic meant, and felt humiliated in front of all those people. I also felt scared and guilty, as if I was causing the headaches that I was having every day. I didn’t know how to stop having them.
    I was very lucky that my parents were understanding, and continued to advocate for me by searching out a doctor who was more knowledgeable and willing to help.
    My teachers through the years were mostly simpatico as well, although I remember a few who grilled me about what a migraine is before they sent me to the nurse, just to be sure I really knew what a migraine was and wasn’t just saying I had one to get out of class. I was mortified when the National Honor Society, which I had gained initiation into my Junior year of high school, dropped me in my senior year, citing too many absences, even though I still had a 4.0 grade average.
    I honestly don’t know how I managed never to be fired from a job, because as I got older the migraines got worse. I worked through many of them, though pushing it often led to the emergency room, but I called in sick many days as well.
    I count myself lucky in that I usually had help when I really needed it, especially after my kids were born (I have 4 kids very close in age…2 of them twins). I managed somehow until my mom or my husband got home from work to take over, but I lived in constant fear of “who will take care of the kids if I can’t?”
    In spite of my luck in being surrounded by family who understood about my migraines, I have still encountered the stigma of migraine in many arenas, and I have battled with depression my entire life. The first time I felt its sting was when my pediatrician humiliated me in his office.

  • Lisa Robin Benson moderator
    4 years ago

    Maureen,
    I am definitely surprised by the many times I told a doctor about my symptoms and how I still did not get diagnosed until my late 20s. Hopefully as awareness is more widespread and research gives us more answers, we will be diagnosed and treated earlier and more successfully.
    Be well,
    Lisa

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