Author: Kerrie Smyres

Resources

Talking Head Pain: A must-listen migraine podcast

Kerrie Smyres

Podcasts were a refuge for me when my migraine attacks were at their very worst. Reading was a trigger and watching TV was often overwhelming, so I’d lie in bed, listening to one podcast after the other. How I wish Talking Head Pain, a podcast from the Global Healthy Living Foundation hosted by advocate extraordinaire Joe Coe, had existed then.

Talking Head Pain tells in-depth stories of people living with migraine. The episodes are heartfelt and honest. They’re a chance to feel connected to other people—which can be tough in the throes of migraine—and also offer practical information to help you understand migraine better.

In choosing people to interview for Talking Head Pain, Joe specifically sought out people whose stories often don’t get told. So there aren’t a lot of straight white women in their 30s-50s, like most of the people telling their migraine stories. It’s wonderful to hear the range of experiences from a wide variety of people’s perspectives. I love hearing how much we have in common as well as the ways in which our experiences differ.

To learn more about Joe’s goals for the podcast and the stories he wants to amplify, read Talking Head Pain: A Podcast About Life With Migraine, the article I wrote for Migraine.com after interviewing Joe.

You can subscribe to Talking Head Pain wherever you get your podcasts. They have bonus episodes that will drop between seasons, so subscribing will ensure you don’t miss a thing. It’s a great listen and the episodes are 15-20 minutes long, so they don’t require a huge time investment.

DRAFT

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

Kerrie Smyres

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!

Kerrie Smyres

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

Kerrie Smyres

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

Kerrie Smyres

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