Migraine World Summit Days 1 – 3 Takeaways

Blue background with text “days 1-3 Summit Takeaways”

This year, I am not attending the full Summit and am working to cover topics that may have new and useful information unique to my personal health journey. These summaries are intended to connect my journey to what is shared while also sharing new innovations in research and care with all of you to increase accessibility. I am also covering less topics as you many areas of education follow the same discussions year after year and I don’t want to be redundant. You can access many of these areas via my Summit Navigational Panel to find topics from other years that may be of interest to you.

The views represented here are those of my own. I do not represent anyone with the Migraine World Summit nor do I endorse anyone involved with their organization.

The first three days were full of information and in the interest of transparency, my critique of the Racial Disparities interview will be published separately with input from the community. Today’s takeaways will be highlighting strategies for chronic migraine treatment, weather triggers, and gut-brain disorders impact on medication efficacy.

Latest Strategies for Chronic Migraine Control by Carrie Dougherty MD

This interview stood out to me as something to watch first due to the topic and focus on chronic migraine. For me, I am not the Summit’s primary target audience by any means, and this actually cleared some of that up. When it comes to the percentage of people who actually have chronic migraine it’s only 2% meaning that our representation is much lower than those who have regular migraine. However from my experience the people who are participating most in the summit tend to be those who have the most severe disease burden and therefore deserve more attention paid towards us in talks like these.

What stood out to me during this interview was the focus on adjusting what it is that we’re doing to reduce disability as it relates to migraine. Carrie made it very clear that it isn’t necessarily reducing our migraine frequency but redirecting what it is we’re doing with our days. For this she emphasized putting our focus into advocacy and trying to help other people or trying to seek out other people with situations similar to ours that we can help and to help the whole movement rather than just ourselves when we feel like medicines and such aren’t working.

One important thing that came out of this talk was the mention of additional resources beyond just the doctor’s office that migraine patients can take advantage of. Carrie mentioned that things like blogs that touch on disability and work accommodations and non-medication options that can help improve or reduce the impact of our migraine are things to look for. She also mentioned that there are social workers that tend to work with doctor’s offices and perhaps connecting with them can be beneficial to us. Finally she mentioned a free resource via paintrainer.org that may be helpful for increasing access to different therapies.

When I think deeper on migraine advocacy, I also consider how we can use our advocacy with our doctors and nurses. Talk about your blogs, your twitter accounts where you spread awareness and strive to bring awareness to them that perhaps your doctors and nurses may spread further – and may even learn from. Not everyone we interact with is a headache specialist. Also talk about new meds and devices with doctors who may not even manage migraine, this helps in making them curious but also in how they may interact with the next person they encounter with migraine.

Overall I did enjoy this interview with Carrie Dougherty an I think it provides good insight into the difference between chronic migraine and medication overuse headache and how those overlap and sometimes are not preventable. I had hoped that this interview would give me some hope as to new approaches towards managing and living with chronic migraine which it did not… But for some people having access to additional resources they may not have thought of can be a huge game changer for them.

How to Manage Weather Triggers – Jan Hoffmann MD

Weather is always one of my favorite discussions as it plays the biggest role in my own migraine attacks. It is also incredibly difficult to track and draw realistic conclusions with that allow us as individuals to really alter much in our life to have a line of defense against it. This talk digs into a bit more of the research that has been done, where we find a correlation and where we do not. The conclusion is that in a percentage of patients a change in barometric pressure can be a trigger, whereas there is nothing conclusive regarding temperature changes or humidity.

This observation is further clarified that it is an individual response rather than something consistent across migraine disease. Some people are triggered by dropping pressure, some by raising pressure, and some by both. When it comes to treating based on changing weather, Hoffmann advises against treating before there is pain even if you suspect the change will trigger an attack.

This also came with the sentiment that we shouldn’t be adjusting our lives to fit around the weather, and I have to disagree. As someone who knows two days before it’s going to rain that storm is coming and gets violently nauseous as snow begins to fall, arranging my life around the weather is actually the closest I can come to having control over the trigger. Sure, I may see a storm for Sunday and never actually feel all that awful, but arranging meetings or cooking or appointments for days that are less likely to be influenced by weather, increases my odds of completing those tasks. If I happen to not be out of commission on a day I expected I often can enjoy a leisurely day or catch up on other things. I don’t believe this approach is harmful.

This talk also worked to debunk the theory that moving can give you the relief you’re seeking – and perhaps as it only relates to weather I may agree. However, just as we analyze compounding triggers to increase the likelihood of having an attack, lifestyle factors determined by where you live could also significantly impact your migraine disease – whether it be weather, better community support, broader health care options, more access to the outdoors throughout the year, and so on.

Finally, this talk sparked an area of concern that perhaps applies more to those of us with chronic to near constant migraine attacks as it relates to the exhausting monitoring, avoidance, and consideration of triggers. We understand in theory that oftentimes an attack is triggered by multiple things causing “the perfect storm” and that an identified trigger simply may have pushed us over our threshold. Sure. This may give us the freedom to eat that chocolate when we aren’t near our threshold (assuming we can predict that), but it actually kind of diminishes the disease in my opinion.

I don’t believe that my migraine attacks are triggered by anything.

I have a neurological disorder. That is what this disease is. I also have an autoimmune disorder. Maybe that additional disease keeps me at or above my “threshold” at all times. The world is also pretty stressful, and with work or family or a pandemic, a lot of people are probably at or above their threshold almost all of the time too.

And as a real world application of how this disease operates, migraine doesn’t exist in an isolated vacuum and after a few years of managing the condition I don’t understand why we still spend so much time focusing on trigger reduction. Surely we can reframe the concept of not overdoing it to something that emphasizes that our society works at a pace that is designed for everyone to burn out and naturally we need rest and can allow ourselves to do less. It doesn’t have to be a trigger if our body is running on empty. Living life has consequences and the emphasis on triggers tells me that as someone living with migraine, I simply don’t get to live my life too.

And of course, this observation is a very individual one as I do not have easy, identifiable triggers, so for someone who does working to avoid them can be a critical aspect of migraine management that I do not intend to dismiss because I don’t have the shared experience.

Sponsored Talk: Is The Gut-Brain Connection at the Heart of Oral Migraine Treatment Failure – Nada Hindiyeh – Impel

This short talk was actually quite enlightening and digs a lot into some areas I’ve considered with my personal health. A Gut-Brain disorder is a condition referenced as one of four diagnoses: Functional Dyspepsia, Cyclic Vomiting Syndrome, Gastroparesis, and Irritable Bowel Syndrome. These conditions are found within almost 80% of people with migraine, and it’s astounding that we’re only now digging into how it can impact how we treat the disease.

We treat our migraines with abortive therapies, and roughly 48% of patients in a referenced study still had pain after using their abortives within two hours. Two hours is the threshold we use to evaluate if an abortive is working. Personally, aside from nausea medication or an anti-histamine, my abortives never work that quickly and tend to have optimal effectiveness upwards of 5-6 hours later. Nada discusses that those of us with gut-brain disorders may find that the rate of absorption for our oral medications is actually dramatically slowed down. This can account for reasons the meds we rely on don’t work as well as they should and are inconsistent when we use them.

Currently most medications are taken orally, though we have a few injectable or nasal options. Nada is an advocate for nasal sprays that target the upper nasal passage where absorption is maximized, effectiveness is quicker and more consistent. New technology is needed to continue to maximize our access to the upper nasal passage – and I will note that as this is a sponsored interview associated with drug companies so there may be some bias that encourages us to advocate for additional research and funding to make this development possible.

On an additional note, if gut-brain disorders impact absorption, I personally am curious about the abortive CGRP medication that dissolves on our tongue and if perhaps more dissolvable tablets may help as a work around for quicker absorption that relies less on our gut?

Day 1 – 3 Closing Notes

Overall the first few days held a few noteworthy interviews, but for another year in a row I’m left fully reminded that these talks aren’t for me or anyone else who has become disabled by their migraines.

After having been rejected by the Mayo Clinic personally, that adds an entirely new layer to viewing these world renowned headache specialists. They sit and give talks and discuss the care plans they have with their patients, what innovative approaches they take to ensure they’re considering every aspect of care and how the lives of their patients are impacted beyond the doctor’s office, and then their hopes for new developments and further connecting with patients. But not patients like me. Not patients with my level of disease burden. Maybe I would have been a great candidate five years ago. But not today.

These doctors and the advocates whom have taken on the role of representing the migraine community only see me as someone to help others not end up in my situation. I am the stellar example of what not to do. I am the person who should spend what joyful moments I do have advocating. Advocating for a community that doesn’t really see those of us with such poor quality of life as worthy of including in better research initiatives or advocacy efforts that can at the very least increase the amounts of money we live on.

They want us to channel our frustration into advocacy, and so as much as I hope the information I do share helps folks find more comfort and better disease management, I will be channeling my frustration into advocacy.

Advocacy very much opposed to the current representation and the subsequent culture created. We may have a bare minimum of research and funds, but it’s time the spotlight shines on those represented. It’s time this community is held to a standard above the bare minimum.

Up next on my Summit coverage I, along with others, will be discussing Day 2’s reprehensible and wildly inappropriate talk on racial disparities, and don’t worry the interview hardly touches on those access barriers, but we will.

A.

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