I am so excited that another season of the Migraine World Summit is almost here!
I’ve relied on the Summit for the past three years as one of the most informative and impactful resources in my toolbox for becoming an engaged and educated migraine patient advocate — both in my own care and in our community.
I found the Migraine World Summit when I was in the deepest throws of a new and difficult chapter of my migraine journey. My neurologist told me that my episodic migraines had now morphed into a new form; it was the first time that I heard the words “chronic migraine”. I had just been forced to take medical leave from my first full time job, was beginning a number of treatments that intensified some of my strongest anxieties and felt completely alone in dealing with this debilitating condition that felt like it was systematically dismantling nearly every single area of my life. I felt so lost and not sure where to turn to find accurate information that could lead me out of this completely unfamiliar and frightening place.
My heart aches so much when I think back on the version of myself listening to the first few interviews of the 2016 summit. I sat in my dark bedroom, alone and completely swallowed by fear, shame, guilt and confusion about my health — and finally — it felt like the universe was throwing a lifeline my way.
As I listened to some of the top headache specialists in the world speak to the intensity of migraine disease and the complexity of its treatment (especially in the case of chronic migraine), I felt completely seen, understood and validated for the first time in my migraine journey.
The authority with which the interviewees spoke about how migraine affects the brain and body quelled the rampant fears that were running through my mind about my illness somehow being my fault. A door was opened to an entire community of professionals and patients committed to living well with migraine disease and for the first time in months, if not years, I felt hopeful that I too would be able to find a way to manage my migraine health.
In short, and with no exaggeration, the Migraine World Summit changed my entire narrative around migraine care, my recovery from chronic migraine and my life.
It was a bright light for me when I was stuck in a seemingly endless and dark tunnel, filled with confusion and fear. The information and hope that I gained from the summit gave me the motivation that I needed take ownership of my own care. It showed me that my struggle was real; and that so was my strength. It awakened in me, both the hope and the desire to have a fulfilling life even while living with migraine disease and planted the seed for a strong belief that I could and would recover and find a way to live in peace with this condition.
The Migraine World Summit is accessible for free worldwide for one week per year. In 2020, it will be offered free of charge— March 18 to March 26 (9 days!).
Each day, four new interviews are posted at 9am CST and are available to view for 24 hours. After March 26, the entire set of interviews (and written transcripts) can be purchased from the Migraine World Summit website so that you can watch at your leisure or share with friends and family.
Some years, I have purchased the summit and used it as a learning tool; other years, I have just accessed it for free during its “live” week. It’s a totally personal choice, but I have particularly appreciated being able to refer back to the transcripts of interviews and treatment guides whenI have purchased them.
You can sign up here for the Summit for free.
In addition, you can purchase a variety of “all access passes” at early bird prices ($79, $129 or $209 ) until March 17th. After March 17th the prices of these passes go up to $99 $169, $269 respectively — I would highly encourage early bird pricing if you think this is something you are interested in!
Below are my top five tips navigating the Migraine World Summit like a seasoned summit participant!
1. Listen to the talks on your phone like a podcast
With several hours of video interviews a day, I find it incredibly tough for my screen sensitive eyes to handle watching every single one of the talks on a computer screen. One way I have managed to “pack in” watching multiple interviews on a single day is by listening to them like podcasts! I’ve listened to summit talks in the the bathtub, on walks, while cleaning the kitchen and even in bed in the dark with ice packs strapped to my head. I like to leave my phone face down and pop on my wireless headphones so that I’m not tempted to glance over and watch my screen if my eyes aren’t up for it.
2. Take notes while listening
Take notes in whatever form you are physically able to while watching the summit. Sometimes I write them in a notebook, on the notes app in my phone or even record tidbits that I really want to remember using voice notes on my phone if I am not feeling well enough write things down. The notes I take from the summit each year are something I find myself referencing often and serve as a helpful guide for ideas to bring up with my neurologist in future appointments.
3. “Split” talks with a friend or family member and exchange summary notes
Teamwork makes the dream work, baby! I cannot recommend this tip enough. My British soul twin, Amy @the_migraine_life, and I have swapped notes the past few years and it’s been so helpful; (she also did an amazing summit summary post on her blog last year). It can be overwhelmingly daunting to try and tackle all of the interviews during the free period in which they are available, and this is an excellent strategy to still get exposure to the material without feeling like you need to listen to every single interview. I’ve also found it interesting to see what parts of a particular interview stand out to someone else, as sometimes there are things I realized I’ve missed or already forgotten (hi brain fog) when I see someone else’s notes.
4. Send talks to family or friends who are willing to listen
Most friends and family won’t be motivated enough to sit and listen to hours and hours of information on migraine disease and emerging treatment options, and that is a-okay! We can’t all be migraine super nerds. However, some of them might be willing to listen to a couple of hours of interviews over the course of a week and even appreciate feeling like there is something concrete they can do to help you manage migraine in your own life.
I’ve asked my mom, dad and fiancé to listen to several talks over the years and it has been absolutely foundational in helping them to truly grasp and understand what I deal with on a daily basis. Hearing leading physicians speak about chronic migraine can help loved ones truly understand the depth of the problem you are dealing with. I find there are usually one or two talks each year that are particularly powerful for loved ones to listen to and I have personally benefited greatly from sharing them with my support squad.
5. Go easy on yourself
There are two gentle reminders I give myself each year when I am listening to the summit. First, I give myself grace on the days where I cannot listen to the talks I had planned to tune into (mini tip: rank talks in order of personal priority or relevance for each day). Sometimes life just gets in the way or I am in so much pain that both physically and emotionally, I don’t have the bandwidth to listen to lectures on migraine disease; which is okay and completely allowed.
If it means that you end up purchasing the summit even if you weren’t planning on it, that’s fine. If it means there are certain talks that you miss out on, that’s fine too. All you can do is your best, and you’re not helping yourself at all if you beat yourself up for not being able to show up for every second of the summit which you had planned to listen to.
I also remind myself that there is no “cure” for migraine or single treatment option that will transform my life overnight. For most, learning to manage migraine disease is a multifaceted approach that includes medication, lifestyle modifications and trial and error over time. It’s impossible to “do it all” immediately when it comes to migraine management, and a huge part of figuring out what works for a specific migraine brain involves having the patience and perseverance to test things out, evaluate what is and is not helping and make changes accordingly. I try to let this fact fill me with hopefulness instead of despair. It is so hard when you are in the thick of uncontrollable migraine pain to muster up patience and imagine trying more things and not having them help. But when I am feeling impatient, I try to remind myself that all I can do is make the next best decision, one choice at a time, as I navigate my way through the murky waters of migraine management.
I hope that these strategies are helpful for you guys. Please feel free to ask any questions about the summit below. 10 days and counting until go time!
I share each step along my road to wellness and healing and hope that in doing so I can inspire you along your own path. Thank you so much for being here.