DRAFT

Miles for Migraine talk rescheduled: THIS Saturday, 9/25

My talk on approachable self-care at Miles for Migraine’s free education day has been rescheduled for THIS Saturday, September 25, 11 a.m-12:45 p.m. Eastern. To join me, register here—there’s no charge to attend, but you need to register to get the link.

I’m really excited about my talk and have now been practicing it for weeks. I’ll share my experience of realizing I needed self-care if I was ever going to improve my physical health. But I mostly will talk about ways to incorporate self-care into your daily life that doesn’t cost any time or money.

I’ll be joined by Dr. Karissa Arca, a headache fellow at Mayo Clinic Arizona, who will be talking about migraine disorders. Rebecca Hill will also talk about her experience with chronic migraine and the treatment plan she has found effective. And Juliana Kroese, a physical therapist and registered yoga teacher, will lead the group in yoga.

I hope you’re able to attend for at least part of the session. I’m looking forward to talking with you about self-care and to learning from the other presenters.

Patient Education

Join me this Saturday: Free virtual Miles for Migraine education day!

Miles for Migraine patient education dayI’ll be speaking about approach self-care at the free Miles for Migraine virtual education day this Saturday, September 18, 11 a.m-12:45 p.m. Eastern. There’s no charge to attend, but you need to register in advance to get the link.

The other speakers and their topics are:

  • Dr. Karissa Arca – Know Your Migraine: A Guide to Migraine Disorders
  • Juliana Kroese – Yoga Practice
  • Rebecca Hill – Patient Warrior – My Advocacy Journey

I’ll be sharing my approach to self-care and how to incorporate self-care into your life without spending time or money. The topic is similar to my 2020 RetreatMigraine talk, but with all new examples and more experience under my belt. I’m slated for early in the day, so please join us right when the session starts.

News & Research

Life with migraine in patients’ own words

Online, it’s easy to find people sharing what it’s like to life with migraine and the impact it has on their lives. Take a look at medical literature and patients’ experiences are scarce. In part, that’s by design—medical research largely looks at the pathophysiology and treatment options for an illness rather than focusing on patients’ experiences—but it’s also incomplete. How can health care providers know how to best treat people with migraine if they don’t understand the experience of living with the condition?

There are excellent studies based on surveys of patients responding to questions about life with migraine. That’s how we know the level of disability people experience during migraine attacks, the impact of migraine on the family, and the degree of stigma patients experience, for example. They provide insight, but not in the patients’ own words.

Which is why I was thrilled to find Learning the Full Impact of Migraine Through Patients Voices: A Qualitative Study, published in the July/August 2021 issue of the journal Headache. It shares the experience of living with migraine as told through the stories of people with migraine.

This is significant research because it moves patients stories out of the realm of anecdote and turns them into data with a fairly large number of participants. The idea of stories becoming data may seem off-putting, but it’s incredibly useful for painting a broader picture of life with migraine. Health care providers are trained in science. While the best providers take anecdotes into account when treating patients, they still rely heavily on data. This study provides data in patients’ own words.

The themes that emerged resonate deeply with my experience of migraine and the experiences of others that I’ve heard over 16 years of advocacy work. The six themes and their subthemes are:

Overall negative impact on life:

  • Migraine controls life
  • Migraine makes life more difficult
  • Migraine attacks are disabling
  • Lack of control over migraine attacks
  • Pushing through migraine attacks

Migraine’s impact on emotional health:

  • Isolation
  • Anxiety
  • Frustration/anger
  • Guilt
  • Mood changes/irritability
  • Depression/hopelessness

Migraine’s impact on cognitive function:

  • Trouble concentrating
  • Difficulty communicating

Migraine’s impact on specific parts of life:

  • Work/career (which results in guilt, change of job status, presenteeism, financial impact, school impact)
  • Family life (which results in frustration, guilt, disrupted time)
  • Social life (which results in irritability, altered plans, communication issues)

Fear and avoidance:

  • Assuming the worst scenario for attacks
  • Fearing future attacks
  • Avoiding things to try to avoid a migraine attack

Stigma:

  • Externalized
  • Internalized

Patients stories were gathered as part of research on mindfulness-based stress reduction for migraine. The original intent wasn’t to tell the stories of patients, but to capture patients’ experiences during the research. So they weren’t asked generally about how migraine impacted their emotional wellbeing, but were asked if the intervention being tested in the research impacted their emotional wellbeing. That’s not a flaw, but an exciting opportunity for future research. From years of listening to people with migraine tell their stories, I expect that direct questions would show migraine’s impact on quality of life is even greater than these researchers found.

What do you think? Do these themes resonate with you? Are there other themes you think should be included?

Photo by Mikel Parera on Unsplash

Community, Coping

Calming My Storm: Aanya Patel copes with migraine & TBI by starting a nonprofit

Aanya Patel was 13 when she fell on the stairs at her home and developed post-concussion syndrome. Nine months later, she was diagnosed with migraine. Now 16, Aanya is thriving as high school junior and an advocate for people recovering from traumatic brain injuries and who have migraine.

Calming My Storm, the unincorporated nonprofit that Aanya founded, is a big part of her advocacy work. The organization seeks to help people with concussions and migraine thrive by offering expert interviews and advice, educational resources, and personal stories of people recovering from concussions and/or living with migraine.

Getting to the “why” behind treatments

Calming My Storm is “built around the idea that if you understand your treatments, then you’ll be more inclined to do it,” Aanya said. She has firsthand experience with this. “Throughout my treatments, I wouldn’t really embrace them until I started asking questions until I understood how it worked. I distinctly remember sitting in PT, and being like, I don’t want to do this anymore. But I would start asking, Well, why do you want me to do this? Why do you want me to stand on my leg? Why do you want me to do this or that? And then my PT was super nice. And she’d explain it.” And that was enough to convince Aanya of the value of physical therapy and want to know more about the “why” behind all of her treatments.

A drive to learn more

When she found some relief with a neuromodulation device, she was even more curious about the why. She began interviewing experts at companies that make neuromodulation devices and asking them about efficacy studies and the mechanisms of action. She took the information from these interviews and turned them into blog posts, which was the start of Calming My Storm.

Empathy and understanding

What started as a blog has evolved into an unincorporated non-profit with a team of volunteers of a variety of ages and backgrounds. All the work at Calming My Storm is grounded in empathy and understanding.

“If you have understanding, you’re more empathetic. If you’re more empathetic, you can help people,” Aanya said. “And if you understand what’s happening inside of your body, then you can embrace your therapies and your treatments better, because you just have that understanding of what’s going on inside your brain.”

Expert interviews

The volunteers at Calming My Storm use empathy to increase understanding by interviewing experts about their research. The goal is to make research more accessible to the average person. Women with TBI is a particular interest.

Learning from others with the condition

TBI Roundtable is a new podcast from Calming My Storm. It’s a place for people with concussions and TBI to “talk about their experience in an open and honest way.” Each episodes delves into a specific topic, like living with a TBI as a high school student. In addition to sharing their experiences, guests also talk about specific strategies they’ve found to cope with their condition.

People who have had TBIs can also learn from each other in Letters to My Old Brain. Aanya describes this project:

“When you suffer from a TBI, you don’t know you’re gonna suffer from a TBI. You don’t know your life will be totally changed. And so a lot of people will describe this as their pre-injury self and their post-injury self, they have their old and they have their new normal…. In that moment, their hobbies changed, a lot of things in their lives changed. The idea is, you wrote a letter to your previous self.… It’s almost cathartic. Like, they get to really process what happened to them. And for people who read it, they can be like, ‘Wow, I’m not really alone.’”

Learn more about Aanya

Interviewing Aanya was a pleasure. I was struck by her wisdom, compassion, and ambition. To learn more her injury and diagnosis, what it’s like to navigate high school with post-concussion syndrome and migraine, and her advice for living well with these conditions, you can read my story about her on Migraine.com in Aanya Patel’s Experience With Post-Concussion Syndrome and Migraine.

Photo by Felix Mittermeier on Unsplash 

Coping

Letting go of a comfort

Until Monday afternoon, I drove a beloved 2005 Subaru Outback. Although I’m not normally sentimental about stuff, I loved that car.

As with so many things in my life, that attachment comes back to migraine-related grief.

My Outback’s story

Hart and I bought the Outback new not long after we moved to Seattle. Outbacks are so common in Seattle that it felt almost like a rite of passage. It was a new model year and caught so much attention that we joked it felt like driving a Ferrari. We had people wave us down to ask about it and one person even did a U-turn and followed us into a parking lot to check it out.

My love for the Outback cannot be separated from my love for Seattle. Which is how this story leads to migraine.

Finding (and losing) my place

Seattle is my place. It has felt like home since the first time I visited as an adult. I feel like I breathe easier whenever I’m there. And 10 months of the year, the weather triggers such frequent migraine attacks that my quality of life plummets. As much as I love it, living there is not worth what it does to my health.

For several years after moving away, visiting even in the sunny months of July and August was just too heart wrenching. I stayed away and took comfort in my car. My memories of that car are so entwined with Seattle that it was like having a little piece of the city with me.

And trying to find it again

I’ve been working on developing a new relationship with Seattle in recent years. A friend finally convinced me that avoiding Seattle was actually making my grief worse, so for several years, I’ve gone for a visit in the summer. (Which is convenient because summer is migraine weather in Phoenix.) I have finally decided that while I will always want more, visting in the summer can be enough.

My continued connection with the Outback is about that wanting more. Even when I wasn’t conscious of it, driving that car gave me a little bit of the comfort that I get in Seattle.

Moving on

When Hart got a new car a few years ago, I began to think it was time for me to get one, too. It felt like time to move on, even though I wasn’t entirely ready. Plus I want something sporty while I’m nimble enough to enjoy it.

For Christmas last year, Hart gave me the promise of a new car when we could figure out a way of buying one that felt safe with my level of COVID isolation. I was moving toward letting go when a neighbor asked if I would consider selling the car. His daughter needed a new car and is headed to snowy country for college, so an Outback is perfect for her.

I love the idea of the car moving onto a new chapter (like in Toy Story, as another friend pointed out). And I’m trying to move on, too. After I shed tears (and had a migraine attack) throughout Monday evening, I happened to see the Outback’s license plate inside the front door. And I thought, “It’s time to find a new relationship with Seattle.”

Building a new relationship

I know my new relationship includes visits in the summer. I’ve already decorated my house in blues and greens to be reminiscent of the nature of the city and filled my yard with lush-looking (low-water) plants. I have some Seattle-related artwork in the house, but I think I need more. Maybe I need a photo of the Outback, too.

I’m not sure what else this new relationship needs, but I trust that I’ll find it.