If you were marooned on Migraine Island, what would you bring?
We’ve all heard the hypothetical question: If you were stranded on a deserted island and could bring a certain number of things, what would they be? Answers typically tend to be in the survival, comfort, and entertainment categories. For example, I may choose to bring a compass, a favorite pillow, and a beloved book. But let’s pretend this island was a metaphor for your migraines, and you knew you’d be stuck there for the rest of your life. What would you bring? I’ve been contemplating this question as I take stock of what has helped me in a life that can at times leave me deserted on Migraine Island.
What I would take for survival:
First, I need a survival manual. My current favorite books are “The Migraine Brain: Your Breakthrough Guide to Fewer Headaches, Better Health” by Carolyn Bernstein, M.D., and Elaine McArdle, and “Real Happiness” by Sharon Saltzberg. How did I find my favorite books? I searched lists, reviews, and recommendations by friends, healthcare professionals, and the internet. Reviews on sites like Amazon.com can be really helpful to get a sense of what the book’s main strengths and flaws are. Or maybe you’d prefer videos, audiobooks, or websites for your own survival manual. Do what works for you.
I also need some tools. My compass has always been my migraine diary. It shows me if I am going in the right direction. If my migraines are less severe or frequent, then that is progress. Perhaps for you it’s keeping track of how much medication you need month to month or counting how many days you had to call in sick to work. Whatever you use as your frame of reference for how you are doing, and even if your compass feels stuck, it’s always good to keep track in a way that makes sense to you.
Finally, I never intend to stay on Migraine Island so will want to construct a life raft. When stranded, my migraine medications keep me afloat until I came come up for air. But to truly gain momentum, the best fuel for me has been encouragement, advice and connectedness from friends, family, and physicians who I have found really care. Find what helps you keep going during the worst of times. Are there small, reasonable goals you can work towards, such as keeping to a regular sleep schedule for a month to see if it helps? Do you know that finding a doctor that you work well with would be the fuel you need to keep searching for a way off the Island? Sometimes it takes some investigating to find out what will fuel you.
What I would bring for comfort:
My Migraine Island is noisy, bright, stormy, unpredictable, and hot. I want to be as comfortable as possible. I’ve heard from many in the migraine community that they always have ear plugs, ice packs, meds, and other essential items with them. For comfort tailored specifically to you, you can think of what conditions are the most troublesome on your own Island. For some, symptoms of dizziness, sensitivity to sound, or pain cause the most disability. One of my biggest issues has been photophobia. When I was chronic I had constant photophobia and even now I am still extra-sensitive to lights. After researching light and headaches on the internet, I finally came across TheraSpecs migraine glasses. TheraSpecs use the FL-41 tint, which has been shown to filter out the portion of light most likely to trigger migraines or worsen photophobia. Wearing these glasses helped me regain my freedom. I no longer have to avoid computers, brightly lit supermarkets, and sunny days at the beach. I am a much more comfortable Islander.
What I would take for entertainment:
I think it goes without saying that Migraine Island is not a fun place. When I need to hunker down for the long haul, I do what I can to keep my mind off where I am. It took some exploration to figure out what worked best for me. I used to stubbornly watch TV when my head was bad and then realize my pain was worsening. If I tried looking at my email or social media I’d just loose focus and forget what I was looking at. It’s a good idea to give something a try and really assess if it helps or hinders you. I eventually found that even if I can barely move in bed, I can still usually listen to soft music or a podcast. I get frustrated when I feel like I can’t do anything, so I like that I am learning something when listening. Music and podcasts have been a faithful companion during many lonely moments and are my connection to the outside world.
Doing this exercise was actually quite soothing for me. I spend a lot of energy worrying about the next attack. Knowing I am actually well prepared to be stranded on Migraine Island gives me some measure of comfort. Knowing that I have a strong compass and fuel to escape gives me hope. No matter where I am in my journey, I have always tried to look to the horizon line.
Now I want to hear from you. If you were marooned on Migraine Island, what would you bring? How were you able to find what is helpful to you? What are you still searching for?