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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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Sarah Hackley: Staying in Tune with the Body When Life Gets Hectic

Happiness with Migraines by Sarah HackleyIn this guest post, Sarah Hackley shares tips for keeping migraine attacks at bay by staying in tune with your body. Sarah is the author of Finding Happiness with Migraines: A Do It Yourself Guide. Win a free copy of her book by leaving a comment on this post or emailing kerrie[at]thedailyheadache[dot]com by 11:59 p.m. Pacific on Friday, September 23. (The contest has ended. Congratulations to Brian for winning the book!) 

Life gets hectic, and there are times when it becomes downright overwhelming. This is particularly true for adult women, who too often feel the pressure to be superwoman. Unfortunately, it is these same women who make up a significant portion of the migraineur demographic, and it is these overwhelming times that are most likely to push us into an escalating series of migraine attacks. One way to help combat this cycle is to stay in tune with our bodies.

What does that mean, exactly? What does it look like?

Being in tune with our bodies is largely about self-trust. Trusting our body to tell us what it needs, and trusting ourselves to hear those messages, understand them, and respond to them. Our bodies will always do their jobs. They will send those messages. That’s what bodies do. It is up to our minds to do the rest.

Cultivating the body awareness needed to respond appropriately to our bodies takes time and attention, but it is something we can all do using a variety of methods, exercises, and intuitions. One great exercise for beginners involves a kind of mindful meditation known as a body scan.

For the body scan, position yourself flat on your back, either on the floor, your bed, or a mat – whatever feels best and most natural to you. Then, gently close your eyes and breathe. Once you are present in the moment, move your attention to your feet, noticing any sensations in the toes, the heels, the soles, the ankles, and the tops of your feet. Invite curiosity to the practice, as if you are paying attention to these sensations for the first time.

Once you are sure you have experienced each sensation in your feet, move your attentions slowly up to your calves, attending to each part and sensation in the same manner. From there, move to your thighs, then your hips, then your torso, then your arms, and finally your neck and head. This exercise can take anywhere from three minutes to half-an-hour, depending on your personal preferences. When you are finished scanning, remain still and return to your breath. Finally, open your eyes, and slowly bring yourself to a sitting position.

Regular practice of this technique will strengthen the bond between your mind and your body, thereby ensuring you notice the body’s quieter messages. This gives you the tools necessary to act to protect yourself before major problems arise. Other ways to keep in tune with the body throughout the day:

  • Be mindful of any aches and pains that crop up and try to ease them with self-message or gentle stretching.
  • Watch your posture, and realign when you start to slump or hurt.
  • Pay attention to your energy levels, especially peaks and slumps, to see if you can uncover a daily cycle to work within (also ask yourself what foods or activities, if anything, may be contributing to that cycle).
  • Go to bed when you are tired and eat when you are hungry, without regard for the clock.

Deep body awareness takes time, but tuning in at any level will dramatically improve the connection between mind and body, which will help prevent small problems from becoming large ones. This will also help you receive your body’s subtle clues that a migraine attack is coming on, hopefully well before any of the overt signals make themselves known. And advance notice always makes prevention and treatment easier – especially in the midst of hectic times.   

For additional self-care tips on how to live well – and joyfully – with migraine, please check out Finding Happiness with Migraines: A Do It Yourself Guide by Absolute Love Publishing.

To keep up with and reach out to Sarah directly, here’s where to find her on social media:

Win a free copy of Sarah’s book by leaving a comment on this post or emailing kerrie[at]thedailyheadache[dot]com by 11:59 p.m. Pacific on Friday, September 23.(The contest has ended. Congratulations to Brian for winning the book!)