One of the main hosts of the Migraine World Summit, Paula Dumas, shares her own journey with migraine in one of the Day 1 interviews. Paula is an incredible leader and advocate and much of my own knowledge would not be possible without the work that she has done. As she moves on from the Summit and towards other things – including some potential coaching and program development – I want to bid her farewell and offer my gratitude.

I won’t be covering her interview as that is her story to tell and much of my thoughts are my own story. I will simply highlight one area, she says taking over our migraine story is about moving from “victim to victor” and she offers advice for what they acknowledge as the lucky 40% of people who can move from chronic migraine back to episodic. Much of that advice is about learning about your health journey and setting practical goals and accepting slow progress.

Before we jump into the other interviews, I want to offer my own advice for those of you (like me) who probably aren’t ever going to get better: there is still a life you can live with migraine and you can define that for yourself. You can create something beautiful that you can cherish that exists outside the realms of capitalism and other people’s expectations for the life you “should’ be living. I hope that you can find acceptance in a reality where this is it and you might not ever get better – not because oh this is depressing and I hope you live in an endless spiral down towards the eternal hell – but because that kind of radical acceptance is incredibly freeing and you deserve to be able to claim that all for yourself even if you don’t make small steps in a positive direction.

There is nothing wrong with you if you don’t get better. You are not broken. And you are not alone.

And on that note, Day 1 kicks off with in depth interviews exploring both CGRP and Gut Health – both topics of great interest to me that I’ve written about extensively.

Interview with Amaal Starling – The Latest Insights on CGRP-Targeted Medications in Migraine Treatments

I’m really grateful to Dr. Starling for her coverage and transparency on these innovative new medications and was thrilled to see she was the featured guest giving this talk.

For me personally the CGRP medications have largely been underwhelming and seemed to interact poorly with my autoimmune conditions, causing consistent flares that seem to “activate” my autoimmune conditions. This is a trend I’ve seen occur more broadly in patients who have similar severity of migraine as myself, who also have underlying autoimmune issues. My main focus for this interview was to see if the research and clinical experiences have begun to pick up on this – the short answer being “no” not really.

However disappointing this may be for me, there have been some newer developments on the CGRP front that are worth highlighting.

Last year (2024) a consensus statement was released which offers guidance on how migraine should be treated. In this statement, they are recommending that CGRP be used as a first line treatment for migraine. This is a critical shift as it acknowledges that the CGRP medications are the first (and currently only) medications on the market that are primarily indicated in the treatment and prevention of migraine. Until now, providers have put the CGRP medications as a “end of the road” treatment option, forcing many patients to try out other classes of medications first.

Having a quicker access to these therapies will be very meaningful to new migraine patients who don’t have to go through years of trialing other drugs and potentially facing chronification of their migraine in the process. The issue remains however the access to CGRP medications is still hinged on insurance companies approving them. Insurance companies still have many step therapy requirements in place that will force patients to go through many trials with the hopes that a cheaper medication will work. With the consensus statement, the access issue now no longer has a clinical base and is solely financial.

Over the 6 or so years that people have been on CGRP medications, research continues to show efficacy and tolerability. Infusions (like Vyepti) are providing the quickest relief from migraine symptoms.

Within the patient community, some people report a reduced effectiveness over time. At this point the studies do not confirm this, but Dr. Starling has a viable approach to this observation. Her working theories are that migraine is a disease that fluctuates and a patient may be in a worse cycle rather than the medications not working as well. Secondary to this, it is possible that comorbid conditions may be making migraine worse. Her advice is to continue the medication and take an additive approach with additional therapeutics, thus keeping a medication that did provide relief at one point and layering more treatment to hopefully reach an outcome that satisfies that patient.

Some developments that were mentioned in this interview include a potential for a pediatric application for CGRP medications – something badly needed as there are slim to no options currently for kids and adolescents living with migraine.

Another drug research avenue looking into PACAP (pituitary adenylate cyclase-activating polypeptide) has also shown early promising results – which will likely take many more years of research but ended the interview on a promising note that acknowledges that research beyond CGRP is needed so that we can fully address all migraine patients.

Interview with Wade Cooper – Migraine Relief Through Gut Health: Science and Solutions

This was a very educational video in terms of how the nervous system really functions and how interconnected both the gut and brain are. Dr. Cooper describes is as a 2 way channel, whereas all the things happening in both areas constantly influence each other. This provides an interesting new perspective for understanding the gut brain connection.

Something brought up in both the CGRP interview and in this one discuss CGRP medications that tend to have negative gut related side effects – such as severe constipation. Some clarity was provided here that the some CGRP medications target the receptor, others the protein, and it’s those that target the receptor that tend to cause the more negative gut side effects. This provides clarity and some treatment guidance for those still wanting to use CGRP but looking to avoid the constipation.

This interview to me highlighted a variety of comorbid conditions and how disruptions in the gut relate to them, while also bringing about the potential to impact migraine. When you have autonomic dysfunction/dysautonomia (or similar conditions like POTS), having a dysregulated gut can make these conditions much worse.

MAST cells were also discussed, noting that people with migraine tend to have more activated MAST cells, which can be linked to various food sensitivities, intolerances, and then to more abdominal related symptoms. This was an interesting connection to me as I tend to hear about people with MAST cell activation syndrome as a slightly more standalone issue, but with so many overlapping symptoms it makes sense that the way our nervous system connects the gut and brain, that migraine plays a role here as well.

For Headache Specialist Dr. Cooper, he feels as if in his practice when they aren’t making progress with their chronic migraine patients, they should pause and revisit gut health. I find this theory to be fascinating, as when I had my brief period of getting a lot better (not sustained) a lot of it surrounded changes to my gut health. And on the flip side, when I began my Low Dose Naltrexone for the management of my arthritis, my IBS and other gut symptoms all completely subsided, but I had no measurable change in my migraine. I do think that the advice is important, because as he notes, even if it doesn’t solve migraine, gut problems are kind of terrible and the quality of life improvements that can happen are well worth having a healthier gut.

Finally, I deeply appreciate Dr. Coopers call to action when asked what’s next, as he simply asked the rich people watching for money. One area he would use the money would be providing a meals on wheels like service for his headache patients that would provide them access to healthy meals to help with their gut health, acknowledging how many barriers there are for all people to implement these changes.

Day 1 Thoughts

To me, this first set of interviews had a slightly different tone than the year’s ago Summit’s. I feel like from a provider standpoint there is a much broader awareness of the difficulties patients are facing when it comes to migraine care. Whether that is with step therapy preventing us from accessing meds in a timely matter, or support for actually getting the healthy food because we as patients may be too sick to cook or meal prep or even go to the store, or simply not have the money to do so.

Acknowledging that the CGRP medications still aren’t helping everyone and that migraine patients face a genetic disease that is complex and varies tremendously from person to person, thus requiring a much wider array of targeted therapies to truly reach everyone just felt nice. It felt nice to not feel like I am broken or wrong for not having been a super responder to these new drugs.

Interview with Richard B Lipton – Part 1: Preventing and Reversing Chronic Migraine

Much of this interview spends time going over some of the differences between chronic and episodic migraine, including how in technical terms it’s divided at the 15 day marker while in reality there isn’t a neat defining line for when migraine transitions from episodic to chronic.

Dr. Lipton notes that in studies following the general patient population, those with episodic migraine in a year to year follow up only 2.5 – 3% of patients transition from episodic to chronic. This differs in representation seen in headache centers where the numbers are as high as 15%.

Dr. Lipton highlights what he considers to be the 4 main risk factors for patients who have episodic migraine to look out for that may lead to transitioning to being more chronic:

1. Headache features – including if patients are having 14 days per month vs 1, are more likely to transition to the 15 days, and symptoms such as persistent nausea and the presence of allodynia.
2. Acute treatment – having ineffective treatment or medication overuse headache
3. Comorbidities – conditions including depression, anxiety, other pain disorders, obesity, asthma, and sleep apnea when present along migraine increase the risk of chronification.
4. Exogenous factors – stressful life events, head and neck injuries, or persistent caffeine use – which he indicates may be a form of medication overuse as the caffeine may be providing some relief.

With these factors in mind however, the gaps in our knowledge of migraine and the biological changes that occur when we transition from episodic to chronic are still unknown and I appreciate that they highlight that despite their ability to identify this list of potential risk factors – some of which can be isolated and managed – these are not proven and concrete science. I find this distinction to be important from a chronic perspective as it can be easy to fall into cycles where we blame ourselves for the negative outcome of our worsening headache disease, when truly it is an under-researched genetic disorder.

Some other gaps that Dr. Lipton identified in our understanding of migraine, include an interesting theory that chronic migraine may not just be one singular disease and it may be heavily linked with individual’s co-occurring health conditions. This then provides an interesting research pathway to analyze migraine alongside the co-occurring condition and potentially find genetic predispositions or therapies that may allow for more targeted approaches to treatment.

He also mentioned a medication that is not indicated for the treatment of migraine in the US (but is available) that other countries do find some success with, which is Candesartan – a medication often used for lowering blood pressure.

This was only part one of the interview so I anticipate the second part will focus a bit more on the “reversing” aspect of chronic migraine. My main takeaway is that there seems to be a shift among doctors that is bringing the focus of treating acute migraine attacks in episodic migraine patients, to be a bit more inclusive of creating effective treatment plans that also work to address some of the risk factors to keep patients from slowly reaching more chronic levels of migraine.

Interview with Chia-Chun Chiang – Are People With Migraine Having More Strokes and Heart Attacks

This question piques my interest as we continue to progress through the ongoing COVID-19 pandemic and are finding a larger swath of the younger population facing heart attacks and strokes. This population that is being impacted by the long term affects of their infections overlaps with the common age groups most affected by disabling migraine.

The question of COVID, migraine, and especially stroke stands out as I’ve noticed more members of the migraine community in the last few years have come to develop migraine and persistent headaches as a result of strokes.

This interview however, was not that.

Although we connect migraine and aura with a higher stroke risk, that risk still remains quite low, and the avoidance of birth control that may contain estrogen for migraine with aura patients may also be an outdated piece of advice as research was conducted long ago when estrogen containing medications contained much higher levels of estrogen.

This interview worked through a variety of research studies looking at both cardiovascular related events and strokes and the associated risk with migraine. Though some research suggests things like slight changes in our blood vessels in our brain during migraine attacks, the impacts and changes are so subtle and unremarkable the links really aren’t there.

This leaves us with a really technical interview that left us mostly with the idea that these are indeed theories people have, but the practical application and links aren’t supported by science. Instead it is suggested we stop smoking and live healthy lifestyles in order to optimize heart and brain health.

This interview also briefly touches on some AI related (not generative) models that are beginning to be explored for the use of comparing large patient populations and what medications and patient profiles come together to create a more successful selection in preventative treatments. I am pretty opposed to AI in most of it’s current uses, but generative AI is different that the AI we’d been working with for years that generate algorithms and are based on actual science that in the future could have promising medical applications. This seems to fall in the secondary application of AI and I hope medical doctors and researchers will continue to evaluate the ethical considerations of AI in all medical uses.

Day 2 Thoughts

I did not really get a lot out of the Day 2 interviews and it kind of felt a bit more like information overload than it did information that could practically be applied to living with migraine.

I did also watch the interview about Heavy Metals & Elements but I didn’t really feel like the information was valuable in terms of migraine or common questions people have. Many people are familiar with the risks associated with heavy metal poisoning and other environmental toxins, and I think as we continue to learn about risks from things like PAFS in our water we as individuals are already looking for ways to reduce our exposure in the few ways we can.

Overall as I close out the first two days of the summit I am feeling like there is both a shift in how we talk about migraine and acknowledging all we don’t know rather than just blaming patients for not being better. And although there are calls for more multidisciplinary approaches to common comorbid conditions and research overlaps, I think I am seeing major gaps in real world concerns. Topics like COVID and heavy metal exposure as an environmental issue and social issue that disproportionally impacts marginalized communities I feel as if could have had more time and space held for them and the honest discussions for those things as contributing factors to people having migraine.

As always you can check out coverage from past year’s summits over at my navigation panel.

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