The semi-official final day of the Migraine World Summit focuses in on Taking Control of migraine. The Summit does continue into Day 9 and 10 with interviews featuring the people who presented at the opening day event along with a final wrap up from Paula and Carl, but my coverage of topics will conclude today.

Today’s interviews dive into what we can learn about treating migraine alongside anxiety and depression, how migraine and treatments change with age, insurance and access barriers, and how we can strive to have a better migraine experience at work.

Migraine and Psychological Comorbidities – Interview with Paul R Martin PhD

On Day 4, we had an excellent look into Migraine and related mood disorders with Professor Baskin, and today Professor Martin continued critical discussions regarding anxiety, depression, and mental health while also presenting a different way to approach treatment.

Professor Martin has developed an approach called the Functional Model, in which he works alongside doctors and neurologists, but rather than focusing on a specific migraine diagnosis, he wants to understand much of the “why” surrounding the condition. Why does one get an attack. Why does one respond in a certain way. Why would a person be predisposed – is there a family history or a trauma/stressor that brought the condition on. He then works to address migraine, specifically migraine paired with anxiety or depression, by using techniques to break up the anxiety or depression cycles.

The largest area of emphasis that I got from this interview was the push to have patients feel like they are in control and are the ones to thank when improvements are achieved. The patients Paul Martin encounters are not new to migraine, and have often failed medical treatments, so restoring the hope and giving credit to personal changes can really help shift patients from a pessimistic outlook to one of optimism.

Another area that I really liked was his specificity in regards to “social support” where he breaks it down into categories of emotional support, informational support, belonging, and esteem support. I think this is a really great concept for me going forward in better understanding the support systems around me and where individuals fall/where I’m lacking in support.

Cognition and Aging Well With Migraine – Interview with Shivang Joshi MD

This was a rather convenient interview for my brain to enter full brain fog/cognitive dysfunction in. But alas, Dr. Joshi provides some incredible insight into the relationship between age, migraine, and concerns that are often had as people get older.

One critical area that deserves to be emphasized from the get go, is that migraine isn’t an automatic indication of Alzheimer’s Disease.

Dr. Joshi described one area of concern regarding migraine and stroke. The prevalence for stroke is higher within migraine patients, but so is a shift in migraine behavior and presentation as people age. Often the common head pain may begin to decrease, while other symptoms such as visual aura, verbal aura, and vertigo increase. This can present challenges in differentiating between the onset of a migraine and a stroke. The key difference is that migraine prodrome symptoms are often predictable and follow a pattern, while TIA/stroke is often an abrupt onset that doesn’t follow a pattern.

When it comes to treating migraine in old age, it can often be complicated by other comorbid conditions – either brought on with migraine or due to aging – that can limit what pharmocological treatments you can rely on.

Navigating Insurance and Access Issues – Interview with Patient Advocate Katie Golden

This was an incredibly important interview addressing the hardships many face when it comes to accessing coverage for migraine treatment and the fight for adequate insurance. Katie Golden had some great tips for understanding ways to better approach this complex system.

The largest areas mentioned were understanding the total cost of migraine – lost wages, urgent care/ER visits, copays, non-covered therapies like massage or acupuncture, and travel expenses to see doctor’s that may be further away. Understanding costs can help you understand how to plan for them, and perhaps allow you to have a tax write-off. Other areas of focus for being the best patient-advocate for yourself include keeping track of your own records, having a strong relationship with your care team, and being consistent with pressuring insurance and actively keeping track of what the next steps are.

And these are all wonderful tips. If you’re a middle class white women.

And I won’t pretend that I don’t fall into this extremely privileged group of the migraine community that gets almost exclusive representation. Because I do. I have top notch insurance, parents who understand the healthcare system and make navigating it much easier. I have financial support and the ability to completely step away from my life to manage my health 100% of the time.

We cannot talk about navigating insurance and access issues without addressing the people who are denied access and care at a highly disproportionate rate.

We cannot ignore black women. Women of color. Marginalized populations.

When it is still openly admitted that doctors do not perceive that black people experience pain, we have to make it clear that we see the discrimination that occurs in the doctors office. We have to acknowledge that for a vast percentage of the population, insurance isn’t the first barrier. And most importantly we have to make it clear that these issues matter to us.

We have to acknowledge that in the fight for disability benefits, you have to be on the same page as your doctor. You have to have support. You have to HAVE a doctor. And that doctor cannot be racially discriminating against you.

We have to acknowledge that I can go to any urgent care or hospital and can simply say I want a specific migraine cocktail and don’t need any sort of paperwork from a physician documenting my emergency protocol, and that black women are seen as drug seekers and refused care, even with proper paperwork and people with them for support.

We have to acknowledge that most of the population doesn’t have a job where they receive health insurance, paid time off, paid sick days, or any sort of support. Low wage workers throughout the service industry do not have the same options as middle-America when it comes to having support from work to utilize FMLA or short term or long term disability. And they cannot afford to not work. And that the type of job someone has should not predicate the type of care they can or should receive.

This interview had huge opportunities to address the real access issues and barriers facing migraine patients around the globe, and it failed to do so.

Migraine at Work: Issues and Progress – Interview with Executive Director and Patient Advocate Elena Ruiz de la Torre

Migraine and the workplace is always one of the most talked about areas of conflict in the migraine world, as many people end up having to leave the workplace due to the inability to have accommodations. For some this means setting up their own business, engaging in work from home freelance opportunities, or being completely removed from the workforce.

Elena does an excellent job explaining the disparities between employers and employees when it comes to migraine. Employers often don’t see migraine as a real issue and view employees as burdensome or chronic complainers. Employees on the other hand refrain from discussing migraine if at all possible because of the known response they’ll get from their boss.

To address the workplace frustrations, Elena suggests the responsibility falls mostly on the person with migraine. We must take the time to educate and make our condition and needs known so that eventually conversations regarding migraine and health become more natural. We must shift the conversation to be less about how they impair an individual, and more how x accommodation will benefit the company as whole. Accommodations often include flexible scheduling, dark rooms, work from home opportunities, and even lighting changes and adjusted fragrance policies.

Personally, I’ve had much success in the workplace with migraine when it comes to communicating with bosses. For me, being up front about my condition, limitations, and what accommodations I may need at a relatively short notice made it easier on the days I needed to utilize the accommodation. In some instances I received an allowance of paid time off so I would be comfortable requesting the time off. In other instances I was able to come into work an hour or so late to allow my medication to kick in. Not all companies and bosses are understanding, but opening up communication from the beginning and having transparency made a huge difference for me.

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Day 8 had some ups and downs, just as the overall Migraine World Summit. As the final day for interviews, my final takeaways will cover a bit more than just these four interviews.

I want to return to the interview about navigating insurance and access and really drive home my irritation with everyone involved at the Migraine World Summit and frankly, most migraine organizations. If you notice the faces of those being interviewed and represented this year, only two were women of color. This is actually a decrease from last year where there were six people representing various marginalized communities.

Migraine is not a white woman’s disease and the constant portrayal of almost all chronic illnesses in this fashion is a problem that we cannot continue to ignore. Because not only are we excluding critical voices from the conversation – and frankly entire continents – we are simply not having conversations about discrimination in health care and ignoring societal implications that without a doubt play a critical role in the chronification of migraine.

Overall, the Migraine World Summit did a tremendous job in covering new breakthrough treatments and diving into the mulitfaceted approached for managing migraine. This final day regarding taking control is a key concept when it comes to becoming our own advocates and shifting our own mindsets, even if pain doesn’t necessarily improve.

I hope that the future of the Summit and migraine advocacy across the board has a positive outlook that is more diverse, inclusive, and begins to shift the conversation to address some of the more harmful impacts that play a huge role in the migraine community. And I get it, many of you may have your nose turned up at this point, but I can tell you from experience the people I’ve worked closest with in finding treatments and working to help understand this condition look nothing like me, and I cannot comfortably be the face of advocacy in a community that I know first-hand is incredibly diverse. But I can comfortably call out the community for not even taking the time to invite these voices to the table.

A.

If you’re interested in watching the Migraine World Summit interviews you can access them with an Access Pass on the migraineworldsummit.com. The views in this blog are solely my takeaways and are not intended to be a summary of any of the interviews.

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