Coping

I am: Identity and chronic illness

The emotional weight of migraine has been especially heavy for me in the last month and, really, in the last year. The morphing and unrelenting stress has ratcheted up my migraine attack frequency and the attacks often include depression-like symptoms. My thoughts have swirled around how small my life feels and how much unrealized potential migraine has left me with.

It was the perfect time to watch In & Of Itself, a film adaptation of an off-Broadway show that’s now available on Hulu. This description from Linda Holmes on NPR is better than any summary I could write: “It’s about seeing people and being seen by them, and about how your own narrative of who you are — I AM a novelist, I AM a gamechanger — collides with stories about who you are that you didn’t get to write.”

“I AM” in the quote refers to cards that audience members choose at the start of the show. They are arranged on a wall and include an array of identities a person could align with: tourist, organizer, leader, mother, life of the party, entomologist…

As the identities came up throughout the show, I couldn’t help but wonder which I would choose. Truth-teller, resilient, and authentic were top of mind. But then I thought about what identities others would choose for me. Would sick be at the top of the list? It feels these days like that’s all anyone can see of me. Or is that illness feels like it dominates my life and because it’s all that I see of myself, I’m projecting that onto everyone around me?

I know that if I asked my loved ones to describe me, sick wouldn’t be the first thing anyone said. It would be present, but as an addendum. They’d say I’m a kind, driven optimist whose ambition has been constrained by migraine. Or that I’m so resilient and determined that I’ve learned how to live as well as possible despite the many challenges of chronic migraine. I know this because people have told me so. And yet.

Even though I do believe them, the pall of migraine covers everything right now. I am not migraine. I do not want to be defined by migraine. I felt like I had a good grasp on the difference between migraine and me when I wrote about this very topic on Migraine.com in Is migraine part of my identity? Yet, here I am, just a few months later, feeling flattened by migraine once again.

In & Of Itself reminded me that I am a mass of beliefs, thoughts, concepts, identities. Who others perceive me to be is shaped by their beliefs, thoughts, concepts, identities. No one is only one piece of their lives. No one is truly who others perceive them to be.

I cannot only be migraine even when it feels like it is all that I am. I cannot tell my story without all the pieces of me speaking up. I wouldn’t be sharing my experience with migraine so openly if I weren’t a truth-teller. I wouldn’t feel so connected to my authenticity through words if I weren’t a writer. I wouldn’t have found contentment (most of the time) in a life with chronic migraine if I weren’t so driven (that trait that I grieve being unable to apply to the career I wasn’t able to have).

My therapist would say “I am” is the most important part of the cards. What follows doesn’t matter. We are all worthy of love and belonging simply because we are. That’s where I’m trying to put my thoughts today instead of being bogged down by the details.

I am.

I am.

I am.

Photo by Kristina Tripkovic on Unsplash
Coping, Treatment

Free online course in migraine management begins Jan. 16

Imagine reducing the severity of your migraine symptoms and/or the intensity of your distress during a migraine attack without medication. Now imagine learning the skills to do so in a free course that you can take from the comfort of your own home.

The Resources for Migraine Management course, offered by the Danielle Byron Henry Migraine Foundation, can help you do exactly that. The free e-course begins this Saturday, January 16. (Registration link: Resources for Migraine Management virtual course registration)

What the Course Teaches

A 10-session online course, Resources for Migraine Management teaches a variety of biobehavioral treatments for migraine management. Each session will teach different methods for managing migraine symptoms and the associated stress and anxiety.

The goals of the program are to:

  • Teach relaxation techniques
  • Teach pain management strategies
  • Learn how to better cope with distressing thoughts and emotions
  • Build resources for greater resilience

About the Teacher

Dan Kaufman, PhD, a research assistant professor in neurology at the University of Utah School of Medicine, teaches the course. A scientist might seem an unusual choice to teach the course, but the story of how he got here is persuasive. In his scientific research on migraine, Dr. Kaufman became curious about the experience of people living with the condition. As he spoke with people to learn about their perspectives, he was compelled to offer help that was more direct than scientific research. He began training in biobehavioral therapies for migraine, which led to him opening a private practice to teach these therapies and, ultimately, to offer this course.

Firsthand Experiences

One woman who participated in last year’s class recently reported that, for the first time in years, she has been migraine-free for months and that her anxiety is virtually gone. While these results aren’t typical, it’s a stunning example of the potential effectiveness of biobehavioral techniques.

While I didn’t take this particular course, I have learned many of these techniques over the years. After the events of 2020 stirred up my stress-triggered migraine attacks, these methods helped me return to my migraine baseline and cope more effectively. They have also been invaluable in teaching me to cope with the onslaught of migraine. Living with chronic migraine is still hard and frustrating, but it is so much easier than before I had these strategies.

Course Logistics

The next class begins on Saturday, January 16. Sessions are on Zoom on the second and fourth Saturday of each month from 1 to 3 p.m. MST. Each one teaches you new skills that build on previous sessions. Classes include opportunities to practice the techniques and get feedback from the instructor, so attendance at the scheduled times is preferred. However, if you’re unable to attend a session live, recorded sessions will available so you can catch up.

Registration

Here’s the link to register: Resources for Migraine Management virtual course registration.

Photo by Oliver Augustijn on Unsplash
Society

Join me at a Virtual Headache on the Hill 2021

Headache on the Hill 2021 will be held virtually March 22 & 23, 2021. If you’ve wanted to attend, but the travel and long days kept you from participating, here’s your chance to attend without leaving your home!

My Experience With Headache on the Hill 2020

Headache on the Hill 2020 was my first time attending and it was an incredible experience. Taking my passion for helping people with headache disorders to lawmakers was exhilarating. And I got to connect with other people in my state who have headache disorders. I learned so much from them. Although COVID was declared a pandemic less than a month after HOH, which pushed our “asks” aside, it was still a worthwhile experience.

About Headache on the Hill 2021

In 2021, Headache on the Hill promises to be less grueling since we won’t be traipsing all over Capitol Hill. Being virtual will also allow more people to attend, thus expanding the number of representatives we can reach. Day 1 will be an online training where we’ll learn our “asks” and plan our approach with others in our small group. Day 2, we’ll meeting with senators and representatives (the number of meetings depends on their availability and how many people in your state attend). I’d love for you to join me!

Apply for Headache on the Hill 2021

To apply, email: info [at] allianceforheadacheadvocacy.org. Let them know what state you live in and that you’re interested in attending. If there’s availability, you’ll be sent a link to the application, which is due Friday, January 15, 2021.

Please don’t be intimidated by the need to apply. The application provides background information to get a good mix of representation at the meetings and to know which representatives to schedule with. Although the application asks for social media information and advocacy experience, neither are required to participate. Be yourself and don’t overthink it!

Questions?

If you have questions about participating in Headache on the Hill, please ask! I don’t know much about the logistical details, but can share what it’s like to be a participant. For logistical questions, email info [at] allianceforheadacheadvocacy.org.

Coping, Triggers

When Self-Care isn’t Enough

“I’m doing everything I normally do for self-care and it still isn’t enough.” I’ve said some variation of this countless times in the last month.

My self-care game is normally really good. Through much trial and error, I’ve figured out what works for me and typically prioritize self-care. Even in this wretched year, I’ve managed to do both the self-care that requires effort (like daily walks, regular workouts, and a healthy diet—as long as migraine doesn’t interfere) and the smaller things that I can incorporate into everyday life. That kept me on a relatively even keel. Until about a month ago.

With the election and its aftermath and the surge in COVID cases, I’ve been a bundle of stress. Despite continuing all my self-care activities, it didn’t feel like enough. In fact, sometimes the self-care itself was stressful.

When I told my therapist that all I was doing wasn’t enough and that my self-care was adding stress, she steered me toward radical acceptance. That is, accepting what is for what it is. No matter how distressing it is, no matter how much I want things to be different, to remind myself that what is happening is happening and all the angsting in the world can’t change it. It’s such a simple concept and an incredibly difficult task.

Thinking about human behavior and puzzling through why people do the things they do is a fundamental part of who I am. And it has been working against me. Trying to understand people’s rationalizations and lack of critical thinking when it comes to politics and COVID hasn’t helped me understand the world in a constructive way. Instead, it has broken my heart.

So I’m practicing setting aside a part of what makes me who I am. Just for a while. Because I can’t radically accept what is happening if my mind is in a constant knot, trying to figure out why people are making decisions that I cannot fathom. And trying to fathom those decisions? I’m also working on not doing that.

Acceptance has been critical for me to cope with chronic migraine. And I’ve learned to apply it to many other situations in my life. But I hadn’t thought to apply it to 2020 even though it has the hallmarks of a situation where acceptance is essential—major, life-changing problems that I have almost no control over. (Note the “almost” in the previous sentence. Despite accepting that I have migraine, I never stopped trying to find relief. The same is true for social and political problems. Acceptance and working toward change can coexist.)

In the 10 days since I began working on radical acceptance of the current state of America, I’m doing better. My stress is lower, my angst is less, and even my migraine attacks are more typical. I’m still angry and sad, but I’m not overwhelmed. Right now, that feels like a win.

Treatment

SpringTMS, sTMS mini Alternatives

If you had success with the SpringTMS or sTMS mini, what can you do for treatment in the wake of the eNeura bankruptcy news? A number of you have asked this question and, unfortunately, there’s no great answer. eNeura had no backup plan in place for patients to continue accessing the device and there’s no news about another company purchasing the assets. (Though it’s been just over two months since eNeura filed for bankruptcy, so that may still happen in time.)

Here are some ideas for alternatives to talk to your health care provider about.

TMS stands for transcranial magnetic stimulation. This technology first became known as an in-office treatment for depression and is offered by psychiatrists. If you only used the SpringTMS as an acute treatment, it’s worth checking to see if any psychiatrists near you offer the treatment in their offices. The device and protocol are different, but the basic technology is the same. A psychiatrist might be willing to work with you to find an effective use for migraine. (I admit this is a long shot. It’s the only way I know to access TMS currently.)

Transcranial direct current stimulation (tDCS) is a less well-known therapy that has been studied for migraine. When I first wrote about TMS, a tDCS researcher reached out to tell me that he thought tDCS was a more effective treatment. That’s about all I can tell you—it has been researched and has shown some promise—but I don’t know how similar it is to TMS. It does seem closer to TMS than the other available devices, but my take is not rooted in a careful scientific analysis. However, it is something to talk to your health care provider about in case tDCS is a good alternative for you.

And that’s really your best option—talk with your health care provider about what might be a good treatment given your particular migraine symptoms and frequency and which treatments you have responded to in the past. Other devices (like gammaCore, Cefaly, or Nerivio) are possibilities, though their technologies are different than TMS. Or maybe a CGRP inhibitor would be a good option for you. Only you and your health care provider can find the best solution for you.

I wish I had better suggestions. My heart hurts for everyone who has experienced an increase in the frequency or severity of their migraine attacks from no longer having access to this device. I will share any new information as it becomes available.

Note: I’m having some temporary issues with comments not appearing on the blog. I still see comments you leave and if you check the box that says “Notify me when new comments are added to this post,” you’ll get an email when I reply. I’m working on getting the comment view fixed ASAP.