My Life With Migraine: The Misses and Misconceptions

Written by: Marissa B., age 31

Migraine. I've been fluctuating between Chronic Migraine and Episodic Migraine for forever! In either case, it feels like Migraine has been haunting my life for way too long. I can’t recall a year, a month, a short few weeks of life when Migraine was not paining me, letting me recover from an attack, or looming in the background with a soft whisper, “I’ll be back....”

Only in recent years, however, have I truly realized how significant an impact it has had on my life, as well as the lack of Migraine awareness in those who don’t experience it directly.

So I write these 8 Misses & Misconceptions not in an effort for fame, for riches (I’ll take that though!), or for pity, but I write in an effort to bring as much knowledge and awareness of the Migraine Disease, that I know all too well.

1.  Unpredictability of Migraine. It is killer. We are not flaky! In my case, it couldn’t be more true. I could not be more organized, plan based, and structured. I HATE canceling last minute, running late, or backing out of a plan. Some may even call this a flaw of mine, a lack of spontaneity. When you take that personality and pair it with Migraine... oh, what a mismatch. We should have been divorced ages ago. But, I didn’t say my vows and he (Migraine) won’t sign the papers anyway. He comes and goes as he pleases. The amount of plans changed, dates canceled, vacations ruined, milestones missed, long awaited trips with friends, special moments that have been in my calendar for a year, that in the blink of an eye are cast away by Migraine or tainted by Migraine, there’s too many to count. Yet, I must say that the impacted days allow me to be even more appreciative of the clear ones, and for those, I am most thankful.

2.    Invisibility of Migraine. Another killer! Like many other invisible diseases, you can’t necessarily tell when I’m getting a Migraine. I mean, I definitely don’t look my best, but you may not realize it. You cannot feel my pain by just looking at my face during a Migraine attack. You can’t really know when I’m trying to fight off a headache in hopes it won’t turn into a Migraine, unless I tell you (which, who likes to be the girl constantly complaining of a headache?). Besides seeing me with an ice pack on my face or the Cefaly glued to my forehead, eyes closed in total zombie mode (not everyone gets the pleasure of that lovely image) you’d just never know how much pain I’m in. And to top it off, you can’t tell that, the next day or two or three, post Triptan, I’m struggling to make it through the workday, exhaustion and head-soreness, as I call it, driving me down. It’s a several day process, even though I’ve told you my physical Migraine was on X day. As they say, just because you can’t see it, doesn’t mean it’s not there…

3.    Triggers. There’s a whole bonus puzzle that comes along with the Disease: DYT - Discovering Your Triggers. What a hot mess that can be. I’ve gone through so many headache diaries, Migraine trackers, food diets, etc. And, just when you feel like you’ve figured out your triggers, Migraine throws you for a little loop! My personal experience with triggers has been not so clear-cut. My triggers like to trick me. Through the years, I’ve learned that the following can trigger a Migraine: too little sleep, too much sleep, too little caffeine, too much caffeine, stress, missed meals, and, travel, and the worst, alcohol…. But, not always! There are days, weeks, where all my triggers are under control, I’ll even throw in some headache reducers, like extra exercise & yoga/meditation, and still, I’ll wind up with a Migraine (eye roll). How annoying is that! There are days though, when I’ll indulge in some triggers, alcohol for example, and lo and behold, no Migraine. What!

4.    Family and Friends. I am so lucky here, but it doesn't come without pain. As an only child, my parents have always gone above and beyond for me. And I mean above and beyond. Driven to my apartment in NYC at 3am for a Migraine attack. Brought home cooked meals in one-hour notice. Held my hand as I cried about the pain. Slept with me when I couldn’t get out of bed. Called headache/Migraine specialists every single day for months to get me an appointment (which, by the way, is a 3 month *at least* wait to get into a neurologist specializing in Migraine. Holy crap!). And on the days I feel great and can really think.... oh how I can really feel the emotional pain my Migraine Disease places on my parents. My mom's first question to me is always, "How do you feel? What can I do?" I wish there was an answer. Migraine in friendships has taught me about people. The understanding friends, the great ones who don't really get it but "get it," if you know what I mean. Friends that drove me to the hospital from a weekend getaway, that understood when I missed her long awaited bachelorette party, that empathized, although didn't fully understand, when I had to cancel that amazing dinner reservation we worked hard to get. Trust me when I say, it is more annoying for me. My friends who “get it” are cherished by me more than they probably know.

5.    Doctors. You would think neurologists would know Migraine because it is a somewhat prevalent neurological condition after all. BUT, neurologists specializing in Migraine are a whole class of being. When I transferred from my general neurologist to my current one specializing in headache, I realized how much more she KNOWS it. I can’t say enough, how different I was treated, both relating to the specific medication protocol, and the consideration of the seriousness of the disease. I am beyond grateful for her and that entire class of neurologists. Choosing a doctor is so essential and not as easy a process as it seems.

6.    Treatment. I’m not a doctor and I definitely don’t try to be one, but I have certainly experienced my fair share of Migraine meds. I'm starting the new anti CGRP Migraine drug next week (fingers crossed!). But I will say that Migraine is tricky. Botox, for instance, worked wonders on me in my earlier years. I mean wonders as in reducing my migraine attacks 80%. But I’ve heard it not work for others. And, while I’ve also read success stories about nerve blocks, for instance, they didn’t stand a chance to my personal Migraines. My point: part of the disability of Migraine is that there is no cure. There’s no set treatment plan that works for everyone. So, when it’s been a year and I’m still suffering from Migraines, don’t go ahead and think I’m not trying! Believe me, I could not try harder! It is a complicated, twisted disease that runs its course differently in each of our bodies.

7.    It Is NOT A Headache! I DO drink enough water. No Advil won't help. The amount of times someone has said to me, "You need to drink more water or take some Tylenol.” (If I only had a nickel...) Yes, dehydration causes headaches. But I, like 38 millions of us in the USA, have a disease. A disease out of my water consuming, exercise getting, diet limiting, extra sleeping, caffeine drinking, stress decreasing, direct control.

8.    Grateful. I can go on and on about Migraines, but the fact is, I’m so lucky. I have two legs and two arms; I have a functioning heart and lungs. I can exercise as much as I’d like. I’ve never had surgery. My brain works well for the most part - I can think, I can talk, I can walk, I can dance. And I am truly lucky to have about half of a month each month with Migraine free days. Free days! I try to cherish these days and use every ounce of them, while still being mindful of the triggers (which is somewhat oxymoron-ish). And for my Migraine sufferers out there, I know you get it. We’re in it together, along with 38 million Americans. Let the research continue and let us appreciate those Migraine-free days the best we can. Thank you for listening. #MigraineAwareness