The Truth About Migraine
There’s no way around it: migraines stink! As someone who has had to miss work and apply for special consideration in school due to the often misunderstood neurological disorder, I sympathize with you. The World Health Organization (WHO) estimates that 14.7% of the world population suffers from migraines (around 1 in 7 people). Unfortunately, children are not immune to a migraine. About 4% of prepubertal age boys and girls suffer from migraines as well.
There is no doubt of the seriousness of a migraine disorder, despite the comments you might get from your coworkers, boss, or your child’s school when you try to have him excused for excessive absences. Many may cast doubt on your disorder with unfounded comments like:
“It’s just a headache”
“Why don’t you take something for that?”
“I work through my headaches, why do you need to take the day off?”
“Nausea? I thought you said you had a headache? What’s next a toothache?”
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Table of Contents
The Truth About How Disabling a Migraine Can Be
The WHO ranks migraines as the seventh most disabling disease among all diseases and severe migraine attacks are classified as being among the most disabling illnesses, comparable to dementia, quadriplegia, and active psychosis. And I can absolutely understand why. Migraines are misunderstood by so many that oftentimes, we push through it to avoid coming across as lazy or weak. It was very difficult for me to accept the limitations that migraines would come to have on my life. I over-promised on projects and assignments. I overextended myself well beyond what was healthy or safe, and yet, still underdelivered to those around me.
The biggest eye-opener for me was when I mentioned that I was considering going back to school to my migraine specialist. I wanted a job that was kinder to my head. She suggested I apply for special accommodations through the student disability office. Even though I had never thought of it as a disability before, the more I thought about her words, the more it made sense. Accepting my limitations and the harsh realities of a migraine diagnosis opened my eyes and allowed me to become a better advocate for my own needs.
Resources and Accommodations Available to Adults and Children
Fortunately, there are resources and protections available through the American Disability Association (ADA). Depending on the level of impact migraines have on your life, you may qualify for disability or special accommodations at your current job. Special accommodations may include:
- a special office away from noises,
- wearing noise-canceling headphones when safe and appropriate to do so,
- an office with non-triggering lighting (fluorescent lights are the worst!),
- implementing a no-perfume policy at your organization,
- allowing some work to be completed from home on days you may be able to work but not necessarily drive
Thankfully, children are similarly protected by the ADA. Children may qualify for extra absent days from school, as well as extended time for submitting assignments and exams.
The Horrifying Path to “Fixing” my Migraine Condition
When I was a child and through my college years, my migraine and headache concerns always fell on condescending ears. My primary care doctors always waved me off, saying my migraines would be “cured” if I only:
- relaxed more
- exercised more
- took better care of yourself
- took multivitamins
- drank tea
- took some Excedrin
- meditated more
- made time for myself
- dropped my clubs and leadership roles on campus
I’m sure you’ve heard these responses as well, and I bet you also felt infantilized and talked down to. After all, telling me I needed to relax more suggested there was nothing wrong with me. Which made me feel as if my concerns and needs as a patient were being disregarded. Exercising was a ridiculous suggestion since my migraines had always been accompanied by dizziness and nausea. Telling me to take Excedrin implied that I hadn’t tried everything under the sun to make myself feel better! And trust me, I had tried EVERYTHING. And telling me to drop the few activities that made me feel accomplished (despite my nausea, dizziness and constant pain) would just make me feel more miserable.
Clearly, I needed a new doctor!
The Importance of Seeing a Migraine Specialist
When I moved to California, my work, the dry air, and pressure changes made everything worse. I made a promise to myself that I would seek out a doctor specializing in headaches and migraines. It still took me a few tries. One doctor tested me for epilepsy despite never having had symptoms to suggest it. I kept searching until I found a specialist several counties south of me. They didn’t accept insurance but I was so desperate I didn’t mind paying out of pocket. I made an appointment with Dr. Molly and she changed my life.
I finally felt heard.
She understood the realities of what I was feeling and sympathized with the terrible experiences I had had in the past.
The detailed symptom and trigger tracking that one doctor had critiqued as being obsessive-compulsive, she recognized for what it was. It was a desperate attempt to take control of my diagnosis and life
I felt like I could finally move forward with life.
Don’t get me wrong, there have been a few low points:
- It has taken many months to find a combination of medications that work for me, and it still has it’s very unpleasant side effects.
- These months have been riddled with many unpleasant side effects. I gained 20 pounds in 2 months and experienced mood alterations. After all, people react to medications differently.
- I have also learned the truth about the migraine “cure”. The “cure” those other doctors had previously talked about was nothing more than false hope. As a neurological disorder, it can be treated and managed, but not cured.
Despite these low points, I have found a doctor that is caring, understanding, and experienced with the symptoms and medications I require. I feel hopeful that I will be able to pursue my goals and a career. If you are located in Southern California and are able to make it to Irvine, I highly recommend Drs. Molly Rossknecht and Susan Hutchinson as headache and migraine specialists.
Engaging in Positive Conversations with your Doctor
Through my years struggling to get my headaches and migraines under control, I have tried many forms of tracking my triggers, symptoms, and progress (or lack thereof). Some have been digital apps I downloaded, spreadsheets, and homemade trackers. After many modifications throughout the years, I have come up with a workbook that has enabled me to identify some previously unknown triggers and symptoms. It has helped me understand my migraines and their changing symptoms and has helped my doctor modify my treatments by tailoring them to my unique symptoms. I am making my workbook available for purchase here, I hope it is as helpful in facilitating productive conversations between you and your doctor as it has been for me.
Please, do not lose hope on your migraine journey. Whether you get one per year, month, week, or daily, migraines are worth being taken seriously. Migraineurs deserve to be treated with respect by co-workers, supervisors, friends, family, and doctors.
I hope my personal story, advice, and workbook have helped you on your journey, whether the diagnosis is yours or your child’s.
StephanieCristi’s Top Recommended Migraine Products
With all my love,
Please keep in mind that I am not a lawyer or doctor. I am simply trying to help others that are suffering from migraines. I hope that by sharing the knowledge I’ve learned through my battle against migraines, I can help someone through theirs.