Author: Kerrie Smyres

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 

Coping

Letting go of a comfort

Kerrie Smyres

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.

migraine advocacy
Society

Headache Disorder & Migraine Advocacy in 5 Minutes

Kerrie Smyres

Five minutes and two email messages is all it takes to bolster the message of last week’s Headache on the Hill advocacy efforts. To reinforce our message, members of Congress need to hear from as many constituents as possible by Friday, April 9.

We are asking Members of Congress to support two requests this year:

At these links, you’ll find details on the issues, what we are asking of Congress, and a simple form to complete with your name and mailing address (this directs your email to the right Congress members).

It includes a pre-written email you can send. You can add two brief personal sentences to the email, if you’d like, or just send as is.

Please note: This request and opportunity is ONLY for people who did NOT attend HOH. 

Thank you for taking this important action to encourage Congress to support migraine and headache research and improve care for veterans with migraine and post-traumatic headache.

Photo by Scott Graham on Unsplash 

Migraine World Summit
Chronic Migraine, News & Research, Patient Education

Migraine World Summit Starts Wednesday, March 17

Kerrie Smyres

The 2021 Migraine World Summit will be March 17–25, 2021. The online virtual summit will include videos from 32 experts, including headache specialists and health care providers, that address new treatments, research, and ways to improve migraine and chronic headache disorders.

Click here to register for the free 2021 Migraine World Summit.

The summit is free from March 17-25 and a new set of videos is available each day. You can also purchase access to watch the videos after the summit is over and other helpful materials.

Each day of the summit, you’ll receive an email with a link to that day’s sessions. They are free to access for 24-hours starting at 3 p.m. Eastern time.

This year’s speakers will talk about:

  • Latest strategies for managing chronic migraine
  • The cause and symptoms of migraine
  • Prevention
  • Why there is no cure for migraine
  • Weather triggers
  • Yoga
  • Medications that can worsen migraine
  • The link between migraine and autoimmune diseases
  • Managing migraine and comorbidities
Community, Society

What to Expect at Headache on the Hill

Kerrie Smyres

If you’ve never attended Headache on the Hill, your first time can be a little intimidating. Knowing what to expect goes a long way toward reducing nervousness. Here’s what my in-person experience was like last year. Since this year will be virtual, I spoke with Katie MacDonald from the Alliance for Headache Disorders Advocacy about the differences, which I’ve noted throughout the post.

The “Ask”

The HOH leadership works ahead of time to determine what “asks” are likely to be most effective. Last year, we asked for legislators to sign onto a bill supporting funding for additional funding in training providers for the specialities of pain management and more fellowships in headache medicine. We will have different asks this year.

Pre-Event Training

Note: All training in 2021 will be virtual, of course. Some sessions will be recorded so you can watch on your own schedule, others will be live sessions so people can ask questions in real-time and work together. If you have been accepted to participate in HOH, you should have received an email with the training details.

At a webinar a week or two before we flew to Washington DC, the HOH team told us about the asks, shared background research, and gave pointers on telling our own story. Then we were told to think about our story that we’d share with legislators. (Your story should be about a minute that explains why you care about advocating for headache disorders. It doesn’t have to be perfected ahead of time, but is good to think about.) This will all be covered in the virtual training this year. 

Training Day

The first day of the event last year was a training where we learned about how to make effective “asks” and practiced telling our story in small groups. This will be on either March 17 or March 20 this year. Attendees were grouped by state. Because Arizona was a large group with seasoned HOH attendees, we also had the lone person from Indiana with us. (He didn’t have to visit legislators offices on his own, an HOH volunteer worked with him, but our grouping was helpful for training.) We were given the names of the legislators we were to visit and the schedule. 

We decided as a team how we wanted to frame our ask and who would speak when. At least three of us spoke at every office we visited—no one had to carry the weight on their own. If the representative from your district is one of the people you’re scheduled with, then you’ll definitely be asked to tell your story. We all introduced ourselves at every office, though, usually to say our names, where we’re from, and our connection to HOH (I said I live with chronic migraine and work as a patient advocate).

This year, it’s recommended that you try to arrange to attend the live virtual training (on March 17 or 20) with the people from your state, if possible. That way, you can have the same benefit of coordinating and learning from the expertise of previous attendees. If you don’t know who is attending, you can ask in the HOH Facebook group. (Depending on your specific meetings and how many people attend from your state, groups may be smaller than every person from the state. Exact groups won’t be known until all the meetings are scheduled.)

Meetings With Legislators

The day of, we started early. I think the first meeting was 8 a.m. Eastern time and we had to meet even earlier to catch the bus to the Capitol and take photos. (This won’t be an issue for this year’s virtual meetings, as they will be scheduled to respect the time zone participants are in.) 

Then we went from one office to the next. We usually talked to the legislator’s chief of staff or their health legislative assistant. They were often young and almost all of them were kind and down-to-earth. And they were curious about our experiences and wanted to hear from us. It was comfortable and not intimidating. Most told us about someone they know with migraine, which was a great personal connection. I believe we may have even asked if they knew someone with migraine. Beforehand, we designated one person to tell their story and one person to take the lead on the ask. As the conversations went on, other people chimed in. It felt like natural conversation. 

Even if you don’t get to meet with the actual member of Congress, don’t feel like you’re being snubbed! The staffers we meet with are most knowledgeable on health-related topics and their opinions carry a lot of weight with their bosses. 

Post-Meeting Debriefing

After each meeting, we debriefed together and filled out a short form about who we met with and how they responded. We also had taken photos with each person we met with and shared those on social media. The post-meeting activity will be a little different this year, since it’s virtual, but the platform will still allow for it.

After All the Meetings

New this year will be a live virtual gathering after the event for everyone to share their experiences. This is a fun advantage to having a virtual HOH. After the in-person meetings, most people went back to their rooms and went to bed early. It is a long day with a lot of walking, especially for people with headache disorders. Having a chance to all connect afterward will be a great bonus.