Students with Migraine Deserve Better
The wrong idea about migraine
I started getting migraine attacks shortly before kindergarten. At that time it was believed that there were people with “migraine personalities” (high-strung, perfectionists, etc.) and I fit the bill in spades. The general population though of migraines as “bad headache” brought on by stress or poor eating. Few could understand why a small child would experience such pain. It was assumed that I “gave myself migraines” either by letting myself get emotionally worked up or as an unconscious way to get out of doing something I disliked. Oddly enough, migraine was apt to strike more often when I was enjoying myself.
Not much has changed in forty years.
I still encounter people who think like this, despite scientific proof to the contrary. Migraine is a secret, shameful disease. Society only thinks it is rare because patients are forced to hide their illness. But it’s not just public perception that keeps us hidden. Between attacks, we look and act almost like everyone else. To the untrained eye, it can be difficult to recognize a migraine patient, even in the middle of a horrific attack. The early warning signs are explained away as “mood swings.” By the time an attack has progressed to a noticeable severity, most patients have already hidden themselves away. No one notices the pain caused by bright lights, irritating noises, or strong odors. Bystanders might observe that we rub our eyes or put our heads down only to interpret it as “just a headache.”
The truth is that these symptoms will force us to retreat into the quiet, cool darkness long before anyone else notices. Unless you live with a migraineur (and maybe not even then) you might never see the nightmare of a complete migraine attack. Most people hear us say, “I need to lie down. I have a migraine,” and watch us disappear. Hours, maybe a few days later, we return to polite society, looking none the worse for our experience. No wonder no one understands migraine. They’ve never actually seen what it does.
Nowhere to hide
There was only one place where I could never hide — school. I hadn’t learned enough about my early symptoms to ask for help before I was completely miserable. Plus, the day was so tightly scheduled that I dare not interrupt for anything less than a dire emergency. Often I would wait until the pain was so intense that it nearly blinded me. On several occasions, I waited too long, only to vomit in front of all my peers. While vomiting usually brought relief to my aching head, it was at least an automatic excuse to go home. What no one realized was that I needed to go home hours before. By the time the vomiting started, it was too late.
Although I had already experienced many migraines attacks long before school started, the first one I remember occurred in first grade. I had been hurting for quite some time when I finally reached my limit. The class had formed a line in the hall outside our classroom. I raised my hand and waited to be recognized. Once the teacher noticed me, I walked up to her and quietly asked to see the nurse because I had a headache. Impatiently, the teacher refused my request and sent me back to my place in line. Upon my return, the girl behind me asked what happened. Not realizing the teacher had followed, I whispered to the girl with an irritated expression. The next instant, I felt a hard “thunk” on the top of my head. I had just been the recipient of this teacher’s infamous finger thunk — something reserved for the worst behaving students. I tried to conceal my pain (both physical and emotional), but my eyes welled up with tears anyway. It was too late. All the color and warmth drained from my face. The pallor of my skin was visible to all. The bitter taste of bile rose in my throat as my tender stomach issued a hasty retreat. My thin frame bent over and my mouth opened wide as vomit poured onto the tile floors. Out of the corner of my eye, I could see the teacher’s expression turn from irritation to horror as she motioned from a safe distance for my cohort in crime to escort me to the nurse’s office. My classmates’ faces alternated between disgust, worry, and sympathy as I endured my all-too-familiar walk of shame. In the distance I heard a flustered teacher send another student to fetch a janitor.
I was an inconvenience.
This wasn’t the first time I had a migraine attack at school and it certainly wasn’t the last time I threw up in full view of the entire class. Because I had the advantage of growing up with a migraineur parent, I was taught early and reminded often to treat the attacks early to avoid such humiliating situations. Unfortunately, that advice did not apply to school. Every time I asked to see the nurse for medicine, I was told to wait or given an exasperated look and asked, “You have a headache AGAIN?” I got the message that migraine was not a good reason to interrupt the teacher, so I learned to wait until the pain was absolutely unbearable.
School was torture.
No doubt you are shaking your head in disbelief. This is not the way to treat a child in pain! Asking a child to wait for treatment until they are pale and vomiting is cruel. I never tried to draw attention to myself because of migraine. In fact, I tried desperately to fit in by hiding my symptoms, but the lights were so bright they burned my eyes to tears. The smells of asphalt, bleach, and markers were terribly strong. And the noise of fire drills set my nerves on fire. Each day was full of new horrors. I was forced to endure the elements three times every day. The rare indoor recess was my saving grace. It wasn’t that I didn’t like to be outside. I just couldn’t stand bright sunlight, strong winds, pollen, the smell of asphalt, the shouts of other children, or the noise of lawn mowers. Even the sound of a bouncing ball could send me reeling in pain. Recess was torture!
Children in pain deserve better!
It would have been so simple to permit sunglasses, a wide-brimmed hat, a water bottle, and some ear plugs. As an adult, these essentials (and more) are never far away. I don’t think twice about using them whenever and wherever needed. Anyone who dares to offer commentary is likely to receive a colorful response, creative sign language included. Furthermore, I have easy access to my abortive medicine at all times. I never have to wait to be called on or given permission to get the relief I need.
Why are students treated so differently? It really is inhumane for students with migraine to be subject to an adult’s schedule in order to have access to treatments that can reduce their suffering. Perhaps some day, students with migraine will be able to keep, at their desk or locker, whatever they need to manage migraine attacks. Ready access to water, ice packs, and abortive medications are just plain common sense.
Educators, listen up.
I know exactly what you can do to accommodate this very vulnerable minority group.
Yeah, I said it. MI-NOR-I-TY GROUP.
Do I have your attention now?
Ten percent of all U.S. students under the age of 18 have migraine. Based on average class size of 15 students, that’s 1-2 students in EVERY SINGLE CLASSROOM in America.
Migraine is a disease. It is a protected disability by both the Americans with Disabilities Act (ADA) and by the Individuals with Disabilities Act (IDEA). Schools have a responsibility to provide a free and appropriate education to all students in the least restrictive environment. IEPs and 504 Plans are entirely appropriate for students with migraine.
Still stuck? No problem. Here’s what I would do.
Elementary & Secondary Schools
Time is of the essence. I don’t care where you are, what you are doing, where you have to be, or if there is a nurse on duty. When a child asks for help treating a migraine, you give it immediately, damn your precious schedule. You banned peanut butter and toy guns already, so don’t give me excuses. It’s time to step up.
District-wide policy changes
- Natural lighting in every room
- Fragrance-free learning environments – no perfume, scented candles, and use only scent-free markers, paints, and craft supplies
- Call parents to pick up any child who has not recovered within 2 hours of receiving help
For students with migraine, give them unquestioned access to and use of
- Quiet, dark room with comfortable place to lie down to recover
- Wide-brimmed hats, sunglasses, or FL-41 tinted glasses
- Noise-cancelling headphone or ear plugs to protect against sound sensitivity
- Alternate seating (may move to a sofa or bean bag versus desk/chair when needed)
- Hot/cold packs, BeKool strips, water, peppermint, ginger, emesis bags, etc.
- Prescription, OTC, and non-medicine abortives such as Cefaly or Spring TMS as prescribed by doctor
- Flexible assignment due dates to accommodate after-school migraine attacks that interfere with homework completion.
- Flexible assignment due dates
- Flexible attendance requirements
- Note-taking service for missed lectures
- Alternative learning environments (online, video conference, etc.)
- Fragrance-free learning environment
- Natural lighting or permissive use of wide-brimmed hats, sunglasses, or FL-41 tinted glasses
- Permissive use of water bottles, ice packs, Cefaly, Spring TMS, IceKap, MigraCap, etc. during lectures
- Americans with Disabilities Act of 1990, Public Law 110-325, Section 504, Retrieved online at http://www.ada.gov, 1990.
- Individuals with Disabilities Education Improvement Act of 2004, Public Law 108-44, Retrieved online atIndividuals with Disabilities Education Act, 2004.
- 20 years of formal education while dealing with migraine
- and 18 more years dealing with thick-headed administrators while trying to advocate for my own children
This article is part of the July 2016 Ultimate Blog Challenge