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Migraine Information and Advocacy Video Series: Call for Participants

A national news anchor is putting together a five-part video series on migraine for a major health website and is looking for people who have migraine to participate in several segments. In addition to talking about basic migraine information and treatment, the series will also share what migraine is really like and how it affects our lives (and our loved ones). They want to hear the stories of people with a broad range of migraine experience (chronic or episodic) and of different ages, genders, and life circumstances. Travel may be required, but not necessarily.

I’ll be participating and would love for you to join me! If you’re interested, please fill out the form at this link and submit it by midnight Pacific time on Sunday, March 12. The questions are to help the producer find participants best suited to different videos and figure out where filming will take place. I will forward the information onto to her and she will contact you directly if you fit what they’re looking for.

Speaking with the producer has me excited about the project. They are genuinely interested in educating people about migraine and are earnest about these videos being used for advocacy. They also clearly want to get it “right”—to portray migraine and its impact accurately. I believe the videos will a great tool for spreading the message about migraine.

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CGRP Drug for Chronic Migraine: Very Promising Study Results

cgrp-drug-for-chronic-migraineAmgen’s CGRP drug provided significant relief to participants with chronic migraine, according to new study results presented at an international conference in mid-September. The drug, called erenumab, was tested at two doses, 70 mg and 140 mg. “Both doses of erenumab were associated with significant improvements in health-related quality of life, headache impact, disability, and level of pain interference, compared to placebo,” according to Amgen’s press release announcing the study’s results.

Here’s a brief summary of the study’s details and it’s findings.

In the 12-week study, 667 participants were given monthly injections of either the drug, called erenumab, or a placebo. The breakdown was:

  • 191 participants received 70 mg erenumab
  • 190 participants received 140 mg erenumab
  • 286 were injected with the placebo

All participants had chronic migraine. At the start of the study, they had an average of 18 migraine days per month and 21.1 headache days each month. The following outcomes were assessed during the last four weeks of the study.

  • Reduction in migraine days per month: Those who were given erenumab (at either dose) had an average of 6.6 fewer migraine days a month.
  • 50% or greater reduction in the number of migraine days per month: 40% of participants who received the drug at 70 mg and 41% who got 140 mg had their number of headache days decreased by at least half.
  • Reduction in use of acute migraine drugs (abortives): Participants who received 70 mg of erenumab took abortives on 3.5 fewer days; those who received 140 mg reduced their medication use by 4.1 days.
  • Reduction in headache hours: Participants who received 70 mg of erenumab had 64.8 fewer headache hours in the month; those who received 140 mg of erenumab had 74.5 fewer headache hours.

Side effects

No adverse effect was reported in more than 5% of the participants. Those reported were:

  • Injection site pain: 3.7% in participants who received the active drug at either dose; 1.1% placebo
  • Upper respiratory tract infection: 2.6% at 70 mg; 3.7% at 140 mg; 1.4% placebo
  • Nausea: 2.1% 70 mg; 3.2% 140 mg; 2.5% placebo

This yet is another promising report on the CGRP drugs that are in development for migraine prevention. All studies so far have found a notable reduction in migraine frequency and improvement in health-related quality of life for a significant portion of participants. Minimal side effects have been reported thus far. This was a Phase 2 study. Phase 3 studies, which are underway now, will include more participants and give us more information on side effects.

(Amgen has also issued a press release about the first CGRP drug Phase 3 results I’ve seen. Participants in the study had between four and 14 migraine days a month. Those given erenumab had an average of 2.9 fewer migraine days per month. With such a wide range in migraine frequency, it’s hard to tell how impressive that number is. But even for someone with 14 migraine days a month, the average would mean about 20% fewer migraine days.)

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Gratitude and Love Amidst the Pain

celebration-of-friendsTurning 40 has been unexpectedly difficult for me. It’s not aging so much, but the recognition that I have spent the last 15 years in service to migraine. While I don’t normally worry about the future, somehow moving to a new decade has me projecting the past 15 years onto the next. I’ve written more about my churning thoughts, but they don’t feel worth sharing. I don’t want to spend more time thinking about grief and fear right now. Because even though these days have been difficult, my heart is also swelling with gratitude.

A friend was over last night and she, knowing how much I love my birthday, asked what my plans are. I explained that it’s been tough making plans because I can’t celebrate with food (which is how I used to celebrate everything), the weather is still too hot to do anything outside, and I’ve been getting migraine attacks every time I’m indoors in a public space. That led into a conversation about how scared I am that my life will always revolve around my health, how I panic whenever my migraine pattern (and responsiveness to treatment) changes, and how tired I am of exerting so much effort just to remain barely functional. As I cried, so did she. When I told her I just want to eat cake for my birthday, she told me she wants that for me, too.

I’m always grateful for this friend, but the cake thing took it over the top. She knows how much food means to me and how momentous eating cake would be. It was a reminder that she always sees me for who I am and listens to what I have to say. She doesn’t have migraine, but she totally understands what I am going through.

Having a friend like this feels like such a gift, but this is just one story of one friend. She’s not all that different from the rest of my friends. They understand that when I talk about migraine, I’m telling them about my life, not complaining. They listen with concern and love. They also get that sometimes I don’t want to talk (or think) about migraine at all. They aren’t put out when I have to reschedule or when I retreat from the world for months at a time. They see who I am underneath migraine and recognize how hard I try to get better. They love me.

I’m turning 40 after a very difficult year with my health. I am sad about the past and fearful of the future. I am also amazed by the beauty and joy in my life. I have the support of so many amazing people. Even on the hardest days, I never doubt that I am loved. That’s what I am going to focus on today, not the loss and longing that has filled this year or fretful thoughts of a future I cannot predict. As I celebrate my birthday, I’m also celebrating the abundance of love in my life.

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Runnin’ for Research: Raise Money for Headache Disorder Research

runnin-for-researchOctober 8 is the date to participate in Runnin’ for Research! Three cities will host a 5K run and one-mile walk to raise money for research into headache and migraine disorders.

Runnin’ for Research was established as a 501(c)(3) nonprofit in 2015. It’s mission is to further “research, awareness, empowerment and advocacy in all areas of headache and migraine disorders.” The organization raised donated $17,434 to the American Migraine foundation in 2015 and $6,313 to AMF in 2014. Dr. David B. Watson, Teri Robert, and Dr. Brian Plato lead Runnin’ for Research.

Here are the details on this year’s races:

Date: Saturday, October 8
Sign-in Time: 8 a.m.
Walk/Run Time: 9:30 a.m.
Registration: $20 (T-shirts are guaranteed for everyone who registers for an in-person race before October 1.) To register, click on the city names below.

  • Kansas City/Parkville, Missouri: English Landing Park, Parkville, MO, 64152
  • Morgantown, West Virginia: Cheat Lake Park, Morgan Run Road Morgantown, WV, 26508 (The course is a packed limestone trail that is largely flat and shaded. It runs along Cheat Lake.)
  • Louisville/Jeffersontown, Kentucky: Sky View Park, 10416 Watterson Trail Jeffersontown, KY, 40299 (The course is a mostly flat asphalt trail.)
  • Virtual Race: Sign up as a virtual runner if you’re unable to attend a race (use any of the registration forms linked to above). You can run or walk in your hometown that day or just donate your registration fee to support this great cause. Virtual runners will not receive T-shirts.

Questions? Visit Runnin’ for Research’s website or email RunninForResearch@yahoo.com for more information.

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How I Learned to Listen to My Body’s Wisdom

bodys-wisdomI am an expert at pushing my body beyond its limits. I didn’t set out to excel at this skill. Ignoring my symptoms and pretending that I felt OK when I didn’t was the only way I could function, so that’s what I did for nearly two decades. It seemed to serve me well. I was a good student with lots of extracurriculars in high school and college. I worked then attended graduate school. I had the outward markings of success for a person in her early 20s.

I was also miserable physically and emotionally. I thought becoming adept at ignoring my body’s signals was helping me. It let me get good grades, work, and keep up with friends—how could that be bad? The reality is that it made me sicker and complicated my attempts to improve my health. Pushing so hard left me exhausted all the time. I didn’t know my symptoms or reactions well enough to assess whether treatments were effective. My life was dependent upon exceeding my limits, so I berated myself anytime symptoms sent me to bed.

This strategy proved to fail abysmally when I was disabled by chronic migraine at the age of 27. After a few years of abject frustration and desperation, I stumbled upon the ideas of pacing and balance. Successfully implementing either of these was impossible while I was still ignoring my body’s signals. Learning to listen was necessary if I ever wanted to achieve balance. (Learn how in Learning to Listen to Your Body and Sarah Hackley’s guest post from Monday.)

I am now so acutely attuned to what my body has to say—and aware of how much better my health and life are because of it—that I cannot fathom once believing that disconnection was actually a good thing. The value of listening to my body is apparent every single day. Recently, this connection led me to a realization that is allowing me to liberalize my diet.

A little background is necessary for this to make sense. A medical ketogenic diet requires measuring your food intake down to the gram. Vegetables, the primary source of carbohydrates, have to be fresh to be weighed properly. Otherwise, the ratio is thrown off by too many carbohydrates.

Friday I made a mistake weighing asparagus and ate too many carbohydrates. Following that meal was the first time in almost two weeks that brain fog did not prevent me from writing. I hadn’t eaten asparagus in a while and assumed the food itself was less of a trigger than other foods. But this didn’t track with my reaction to asparagus from a few weeks ago. That knowledge of my body’s reactions led me to important questions. What if the reduction in brain fog (a marker of a less severe migraine attack than usual) was because I accidentally decreased the ratio by increasing my carb intake? What if ketosis, which has only ever been slightly helpful for me, is actually a trigger now that I have a new, effective treatment in place?

These thoughts seemed untrustworthy. I was suspicious they were driven by wishful thinking. I ruminated on them for a day and talked them over with Hart, hoping that giving voice to them would reveal the truth. Nope. I finally thought to check in with my body. I considered my symptoms and compared them on that mild brain fog day to when I ate asparagus a couple weeks ago. I listened to the instinct honed through years of restrictive diets. I reminded myself that I was the expert on my own body. Although I was afraid of losing a Sunday with Hart if my intuition was wrong, my body said that this hunch was more than wishful thinking. It was time to start decreasing the ratio. So far the results are promising, though it will take at least a week to really know what the outcome will be.

I’m grateful for the knowledge that led me here. By knowing how to pay attention to my body’s signals, I’ve discovered that I may be able to reduce the use of a treatment I detest. But the knowledge gained from listening is so much greater than what’s happening this week. It’s how I discovered that eating anything is my biggest migraine trigger. It has invaluable discoveries over these nearly five years of restricted diets. The diets and food restrictions are incredibly frustrating, but they’re also why I feel so much better. All of this led to the new treatment that’s proving to be quite helpful—a treatment I would have never gone through the enormous trouble to try if I weren’t so convinced of the connection between eating and migraine attacks for me.

Pretending I was OK when I wasn’t seemed to be the right and helpful—really, the only— way to deal with illness. In reality, I was jeopardizing my chance to feel better. If I hadn’t switched tactics, I’d still go to bed each night wondering how I’d get through another day. By learning to notice and honor my body’s symptoms and limitations, I now expect to feel good each day and am disappointed when I don’t. That life-changing shift is astonishing and freeing.

Want to learn how to listen to your body? Sarah Hackley’s guest post from Monday provides helpful guidance. I also wrote about it for Migraine.com in Learning to Listen to Your Body.

Enter to win Sarah’s book! Comment on Sarah’s post or email me at kerrie[at]thedailyheadache[dot]com by11:59 p.m. Pacific on Friday, September 23. (The contest has ended. Congratulations to Brian for winning the book!)