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.

Treatment

Cefaly Now Available Without a Prescription

You can now purchase a Cefaly Dual without a prescription. It’s currently $399 on the Cefaly website and has a 60-day trial period.

I have mixed feelings about Cefaly being available over-the-counter. Cefaly has brought at least some relief to many people I know. I also know others who have had a lasting worsening of their migraine attacks after using it. While that could be coincidental, headache specialists have told me that they’ve seen the same. My headache specialist told me that of all the devices, Cefaly is the only one he’s seen patients have a lasting worsening of symptoms with.

Early on, some providers recommended patients push through the increased pain for weeks to months to see if they would eventually notice an improvement. That’s when my specialist noticed the lasting increase in symptoms with his patients. The continued use through pain could very well be the problem—not the use itself—so a short-term trail may be just fine.

I don’t want to dissuade people from trying Cefaly—but do caution you to be mindful when doing so. Here are some recommendations for trying it:

  • Even though you don’t need a prescription, consult the health care provider who would have prescribed the device before you try it. Ask for their recommendations for safe use. Be sure to ask the questions that will help you feel comfortable using it.
  • Start on the lowest setting and see how you do. If you notice an improvement, try sticking at that level for a while to see if it’s enough before increasing the intensity. If you don’t notice an improvement, ease into an increase slowly.
  • If you notice a worsening of your symptoms when you use the device, don’t try to push through to see if things improve. Consult your health care provider instead. You may want to try it several times to be sure the device is the culprit and the worsening isn’t coincidence (which it very well could be), but that’s best to do under the supervision of a health care provider.

A friend shared the news of Cefaly’s OTC availability and mentioned that her implanted nerve stimulator experience was a nightmare. She said that experience has made her cautious about trying anything that might make her worse. Similarly, my nerve stimulator implant also made me aware that the things we try to improve our health can instead exacerbate our symptoms. I’m sure I am more cautious than most people—I got that way out of experience and fear of worsening my already tenuous health.

So take what I say here with a grain of salt if you need to. I don’t want to scare anyone, but do recommend an abundance of caution when trying Cefaly.

Coping

How are you holding up?

We’re six-ish months into everyday life during a pandemic, racial tension is boiling over, and we’re in the midst of a horrible election cycle. It’s an understatement to say that life is hard right now. I’ve heard from countless people with headache disorders and other chronic illnesses who are experiencing an increase in symptoms. Depression is creeping up for many. Even my healthy loved ones are feeling frayed.

I found myself thinking of you all as I listened to Brené Brown’s latest podcast episode, On My Mind: RBG, Surge Capacity, and Play as an Energy Source. She talked about the frustration and despair that’s rampant right now. She referenced an article I read last month and found really helpful for understanding my current stressors, Your ‘Surge Capacity’ Is Depleted — It’s Why You Feel Awful. In addition to explaining the “why,” which I always love, the article has good coping tips.

So how are you doing? How do you feel physically? Emotionally? What coping skills are you using to get through this difficult time? I understand if you don’t want to share in the comments (though you can post anonymously), but you’re welcome to send me an email if you’d like to catch me up.

If you’re curious, I’m doing OK. I’m heartbroken by the number of people who have died because of how the country is handling COVID. I’m disheartened and worried about race relations in the US (while at the same time have some hope for change). I’m anxious about the election and sad about Ruth Bader Ginsburg’s death. And yet, I’m holding up fairly well. Here are the high points:

  • The isolation is surprisingly fine for me. I think that’s because I’ve been housebound before, so I’ve already developed coping skills to manage it. Also, last time I believed it would never end, while this time I think it will.
  • When the weather and migraine attacks allow, I’m getting outside for walks. That’s a huge benefit to my mental health.
  • While my migraine attacks are worse than they’ve been for a few years, I think they’re improving now that monsoon season is over.
  • My husband is my favorite person to spend time with and we’re having fun at home together. We’re able to be in separate spaces during the day, so I don’t even have to listen to him on Zoom at work (which would definitely stress me out).
  • My mom and I are working on an oral history project. We’re having great conversations every week and I’m learning a lot about her and our family.
  • I have regular video chat dates with friends to do puzzles (not puzzles with pieces—more like logic puzzles). I love both the people and the activity.
  • I’m doing more advocacy work and getting excited about writing again. It feels great!