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Age 20, Toronto, Ontario, CAN
- Most Predictable Trigger: Rainy, damp weather
- Weirdest Migraine Symptom: Brain fog
- Best Migraine Friend: Ice packs— I go to bed every night with one on my head.
- Most Amusing Pain Distraction: Watching stand up comedy
- Favorite Migraine Book: The essay “On Being Ill” by Virginia Woolf. Recently I’ve really enjoyed 10: A Memoir of Migraine Survival by Danielle Newport Fancher.
How and when did you first get diagnosed with Migraine? Any specific type?
I was first diagnosed with migraines when I was fifteen by my PCP, but I’d been having them at least once a week since I was 9 years old. I remember getting severe headaches and having to crawl into bed with my mom, the lights off and a cold compress on my head.
I went to a really awful pediatric neurologist when I was ten or eleven who told my parents that I was just having stress headaches and was exaggerating them for attention because “kids don’t get migraines that often.”
By the time I was thirteen, I started missing school because of them. By the time I was fifteen, I was having them at least three days a week, and that steadily increased over the years.
A year ago I was properly diagnosed with chronic intractable migraine without aura by my headache specialist.
What lifestyle changes have you made to help prevent Migraine attacks?
So many, in addition to taking preventive medications and supplements. I currently cannot work or attend school, and I’m living at home while my friends are away at university.
I’ve limited my caffeine intake, eliminated chocolate, cheese and many types of meat due to nitrites. I try to maintain a regular sleep schedule – which is difficult due to my insomnia. I don’t sleep in.
I keep myself very hydrated and don’t drink any sugary drinks or alcohol. I have to be careful to pace myself on good days because the smallest stimulation can trigger a bad attack the next day. I’m often too nauseous to go to restaurants or eat with my family.
I can no longer dye my hair the way I loved to because of the chemical smell. I can’t go to the movies because it’s just too much audio/visual stimulation for me. I have to shower in cool water because heat triggers it. I’ve had to miss family trips and I worry about flying or going on vacation.
What was the turning point in your Migraine Journey?
Having to take a medical leave of absence halfway through my first year of university because my migraine became constant. There were other reasons- severe anxiety and panic attacks in particular- but it was all related. That was the most devastating blow because being a good student is an important part of my identity and losing that was really difficult.
A second turning point was probably a few months later when I started struggling with my mental health in a way that wasn’t just co-occurring with my migraines, but was directly caused by them. I started to feel intense grief for the life I lived before my migraine became so insidious. I became suicidal from the constant pain and associated symptoms and the impact it was having on my life.
Who has been the biggest help to you on your Migraine Journey, and how?
Luckily, I have a number of really supportive people in my life. My grandmother suffered from menstrual migraines, so she understands the pain. She and my grandfather have been really helpful with bringing me to appointments and that kind of thing.
My friends are absolutely incredible. Migraines have really impacted my social life and have made a lot of activities I formerly enjoyed impossible to do. My friends have taken this in stride and have not let it diminish our relationships.
Even if we can’t go out the way we used to they are still happy to meet me on my level and just hang out at home or get coffee. This level of understanding and support has meant so much to me.
What is the most surprising thing you have learned about Migraine during your Journey?
The most surprising thing I ever learned about migraine is that until the CGRP antagonist medications came out this past year, not one preventive medication commonly prescribed for migraine was actually developed for migraine.
I have learned a lot about the stigma and misconceptions surrounding migraine— it’s not just a headache, it’s a neurological disease! — and I find it so shocking how little most doctors know about a shockingly common disease.
What’s your advice to someone else living with Migraine?
Find a headache specialist, and perhaps just as important, find a community of people (probably online) who are going through this same journey. Finding friends through social media who understand both the physical and emotional pain of living with constant migraines has been an incredible comfort to me.
What’s the next step on your Migraine Journey?
I’ve just started Aimovig so I’m praying and begging that to help!! I’m also discussing different infusions— ketamine, lidocaine, magnesium, etc— with my headache specialist.
I’m also hoping to try medical marijuana. Lastly, I’m hoping to start seeing a therapist specializing in chronic pain. I want to learn how to function and manage my pain, and more importantly, how to find value in my life despite migraine.