Last year I had the absolute honor to be sponsored by friends and family and attend the Migraine World Summit for the first time.

It was an incredible experience that led me to trying all sorts of new treatments, including the Cefaly device. Participating and hearing from doctors and patients across the globe gave me a new perspective as well new approached for when it comes to interacting with the healthcare professionals in my life.

This year, I’m again so thankful for all of my patronage support for covering my Access Pass. Although the Summit is free to attend, the interviews only remain available for 24 hours, while the Pass gives me access to the interviews and transcripts indefinitely.

After I complete each day, I’ll be creating a post like this one documenting my thoughts and highlighting some key information from each of the interviews. These aren’t summaries, rather my personal reflections.

Initial Summit Thoughts

Coming into the Migraine World Summit this year, I definitely occupy a much different headspace and have different goals in mind for learning and what I hope I will get out of the event. I’m really looking forward to hearing specifically about connection to pain and memory (day 4), autoimmune diseases and the connection to facial pain (day 4), along with a variety of new information about CGRP medications like the pros and cons, and real life application of the drugs.

However, I will be frank. Although I know people like me – those who are disabled by migraine and have a very low quality of life because of this condition – are not the target audience for the Summit, we are perhaps the people watching it and participating the most. And I struggle with not feeling like the Summit is completely for me.

I want to see more conversations about preventing chronification of migraine and hear from more doctors and about the much harder to treat cases. It’s really hard listening to hours and hours of interviews that make migraine seem like only a small fraction of one’s life. It’s frustrating the constant reassurance that this condition can be managed when, if that were 100% the case it wouldn’t be one of the top disabling conditions around the globe.

Being disabled, impaired, and unable to function due to a condition doesn’t sound like successful management.

So, I guess you can say I’m a bit wishy-washy going into these interviews. I’m excited to learn and expand my understanding, and hopefully have some perspectives shifted, but I’m weary of feeling as if the condition is still being minimized.

Triumph Over a Private Pain – Interview with Amanda Beard

This is an excellent interview with the world famous Olympic swimmer Amanda Beard. She shares her journey with migraine while being a successful athlete and how often the symptoms were pushed off to various other things. Amanda didn’t begin sharing her migraine journey until more recently.

From the interview, I can’t quite tell if Amanda still experiences migraine attacks as much of the discussion was focused on the past tense and her swimming career.

Personally, I struggled with this interview because she left off with leaving us with the advice that we can still live our life however we want to. That we may have to put up a fight, but that we will come out on top. Pushing so hard is one of the factors that worsened my condition to the point of disability. In truly putting myself first and giving myself time for my health, as Amanda also suggests, a large part of that is accepting that my hopes and dreams for the future will be different and will require different steps to get there, but they can still be just as rewarding and bring joy despite not looking like what other people expect.

Hiding in the Spotlight: Celebrities with Migraine – Interview with Andrew Levy, PhD

Andrew Levy, professor and author of A Brain Wider Than the Sky walked us through a fascinating history of celebrities who have lived with migraine and other headache disorders. Notable athletes like Troy Aikmen and Dwane Wade, musicians like Kanye West and Elvis, political figures including Harry Truman and Thomas Jefferson, and some of the world’s most renowned thinkers like Sigmund Freud, Charles Darwin, and Friedrich Nietzsche are all subjects within the spotlight who have spoken out about living with migraine.

Many artists and creatives reference migraine and become a source of solidarity for everyday people relating to the work they’ve produced, such as paintings by Picasso and Van Gogh.

This interview takes you through key periods in time including the American Civil War, writing the Declaration of Independence, and some insight into Elvis’s death.

I really loved this interview as it’s so critical to see that this disease is common and has been present throughout history. Andrew Levy also conveys very well the balance that exists between toughness, humility, and empathy with how we face the world and choose to disclose migraine.

Fighting for Cluster Relief – Interview with Bob Wold

Patient, turned patient advocate and now leader of the largest Cluster headaches support group: Clusterbusters, sits down to talk about what cluster headaches are and the challenges patients face.

Starting with his own trials to get to a diagnosis, Bob Wold makes it clear that the vast majority of patients are often misdiagnosed at first and can take decades to get the proper diagnosis – meaning for decades they don’t have proper treatment. Often, the issue is confused with a dental one, as pain can be prominent in the jaw and has lead to some individuals having all of their teeth removed.

It’s noted that because of the nature of cluster headaches cycling, and having a 6 week long attack maybe once a year, it’s also hard to test out available medications, as the attack may end because the cycle is over rather than medication being effective.

The biggest advocacy effort comes in needing treatment specific for cluster headaches, not just migraine, and in fighting for effective treatments such as oxygen to be approved by insurance companies like Medicare. Currently, most drug trials don’t include cluster patients through all the phases so varying doses that may be effective for cluster rather than migraine simply are not tested. The latest CGRP – Emgality – is an exception and had a focus on cluster headaches through all three phases of clinical trials and is currently available for the treatment of cluster and migraine headaches.

I think this interview is incredibly important as it sheds light onto cluster headaches and how it varies from migraine. It appears to be the only interview throughout the Summit that has a direct focus on cluster attacks.

Patient Panel: Thriving Despite Migraine – Interview with Patient Advocates

This interview shares the stories of three prominent advocates within the migraine community: Jon Summer, Alicia Torborg, and Shirley Kessel. Compared to the beginning of Day 1’s interview, these advocates live with mostly chronic migraine and although they’ve lived with it for decades there is no hint at it not playing a substantial role in their lives.

I really appreciated how raw and honest this interview was, it didn’t shy away from the true day to day battles we face and put an emphasis on not just managing migraine, but dealing with it. To me, this is a huge differentiation as management implies some relative level of success or reduction of symptoms or pain, whereas “dealing with it” shows the reality of having to implement coping strategies and emotionally embracing the way the condition ebbs and flows.

I applaud the Summit for wrapping Day 1 up with this focus on patients who make up a large range of our migraine community – either finding careers through migraine or having to leave careers, along with having parents and children facing the same genetic predisposition for the disease.

Despite my distaste for the concept of “thriving despite migraine” Day 1 really encapsulated that thriving doesn’t always mean living life to other peoples standards. There is a lot of recognition for the adaptations we’re forced to make, and the strict lifestyle changes we must adhere to in order to have some level of balance with this condition.

If you’re interested in watching these videos, you can purchase an access pass from the migraineworldsummit.com website. The Summit runs from March 18th – March 25th where you can access new videos each day at 6 PM for free.

A.

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