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My First Migraine Fundraiser Race!

Miles for Migraine logoHart: “Is this what people normally do on weekends?”

Me: “Right? It feels like we’re on vacation.”

We were walking to get coffee on a Saturday morning. It’s a walk Hart’s taken many times in the six years we’ve lived here, but I’ve never been able to join him. Until a few weeks ago.

Spending time with friends and family, working, exercising, cooking, cleaning my house, eating whatever I want… After 14 years of disability during which I have lived and breathed migraine, being able to do the normal activities of life feels like I’m on constant vacation. The indescribable joy I feel is one reason I will be walking in the two-mile portion of the Miles for Migraine race in Phoenix this Saturday. This is the first walk I’ve been healthy enough to participate in, so I will be celebrating the pleasure of having a body that is now capable of walking a couple miles without keeling over.

I’m also walking for the millions of people whose lives have been rendered unrecognizable by migraine. Far too many of us have spent years buried under this illness. I would still be housebound and nearly bedridden without programs that fund migraine research.

If you’re in town and able to join me, I’d love to see you on Saturday, March 18 (here’s the registration form; March 16 is the last day to register). And if you’d like to donate migraine research—even $5 is a huge help—here’s my Miles for Migraine pledge page. If you work for a company and would like them to match your donation, you can donate through that link and then email shirley[at]milesformigraine[dot]org for details on the follow-up paperwork.

Thank you for being a part of my life. Even if we’ve never met (or even emailed), the support of The Daily Headache readers has been vital to me through these difficult years.You’ll be on my mind during the walk. I wish relief for every one of you and believe that through efforts of programs like Miles for Migraine, it’s possible we will all find a reprieve.

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Brain Fog, Uncertainty, Excitement, Beauty, and Hope

brain-fog-gc-minI’ve spend the last six months traveling in the land of brain fog. It’s a weird level of brain fog. I putter around the house as if I’m thinking just fine, then I sit down to write and my IQ plummets. Although my inability to string sentences together has kept me quiet, I’m actually doing remarkably well. My new treatment is working way better than I could have imagined and I’ve determined that the cognitive dysfunction is almost certainly a side effect from a drug I’ve been able to stop taking.

About My New Migraine Treatment

I’ve been using my new treatment since June 23. (I have to keep it a secret just a little longer. I’m told I’ll be able to tell you about it any day and am so excited that you’ll be the first to know when I can. Know that I’m not holding out on something that could help you now—It’s not yet available, but should be very soon.) The first months were full of heartbreaking lows and exhilarating highs, then my migraine symptoms seemed to settle into a slow and steady improvement. After quitting the ketogenic diet six weeks ago, my improvement became astonishingly swift. I can now eat anything I want. (I have to repeat that: I can now eat anything I want!). I still get a migraine attack every time I eat, but the symptoms are barely noticeable when the treatment works.

When the treatment works… that sounds ominous, but it’s really just part of the ongoing adjustment. Balancing the variables of which foods and how many calories I eat with calibrating the treatment just right is a challenge, especially because I keep trying new foods. When the dose is too low, the treatment dampens the migraine attack without fully aborting it. At too high of a dose, I feel great for an hour or two before a rebound migraine attack hits. However, When Goldilocks is satisfied, I’m high with feeling like myself again.

While these variations are tedious and make my day-to-day symptoms unpredictable, the overall effect is wonderful. You see, the treatment is making me less sensitive to food triggers over time. Once I find the right dose for a particular meal, the treatment works perfectly a handful of times. Then the dose becomes too high for that meal and I have rebound attacks. Then I have to guess at how much to reduce the dose and start the process over. (I’m talking in food triggers because that’s my issue, but the treatment can work for other types of triggers, too.)

On Brain Fog

Given the overall success with the new treatment, the persistent brain fog was frustrating. After dealing with it for months, other symptoms starting creeping up, like increased anxiety and ringing in my ears. When dizziness become another frequent companion, I had an epiphany: Wellbutrin has been the source of all the debilitating bouts of dizziness in my life. My new treatment is also used for depression… perhaps in addition to helping my migraine attacks, it was reducing my depression and making me overly sensitive to Wellbutrin’s side effects. I reduced my dose from 450 mg to 300 mg in January and the brain fog, dizziness, anxiety, and tinnitus reduced. Two weeks later, the symptoms began to resurface, so I reduced the dose again. And again. I’ve been completely off Wellbutrin for a week, the brain fog seems to be receding, and the other related symptoms have abated.

What’s Next? Uncertainty Reduction at the Grand Canyon

As I wrestled with my life’s current excitement and uncertainty combined with a loss of innocence brought on by politics and a family health situation, I imagined myself standing on the edge of a canyon. The phrase “precipice of grief” popped to mind immediately, but it’s message was was muddied by the image of a beautiful canyon. The meaning was unmistakable. Life is scary and full of grief. It is also unbelievably precious and beautiful. To root this belief in my heart and body, I’m going to stand on the glass bridge at the Grand Canyon. The thought terrifies me, but I expect seeing the beauty and confronting my fear will make me stronger than before. (At least I hope so, otherwise my metaphor will fall apart!)

After a busy few weeks of doing the Miles for Migraine race in Phoenix (please join me if you’re in town!), attending a conference at the Mayo Clinic and another for Health Union advocates (that’s the company behind Migraine.com), having my family visit, and recording for the migraine video series I mentioned last week, it’s time to think about the future. What matters most to me right now? Where will I be writing and how much? What roles will I play at TheraSpecs? How will I build my local community now that I’m able to be more active in the world? How else do I want to spend my time? I’m not sure what answers I’ll find, but I’ll let you in on the exploration.

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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.