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More Migraine and Headache Hope: 2014 American Headache Society Symposium

Energizing and encouraging are the words I’d use to describe the American Headache Society’s symposium last week/weekend. The opening remarks on Thursday morning actually made me cry. After the AHS president, Dr. Lawrence Newman, shared his heartfelt frustrations with migraine treatment and gave an impassioned plea for the 36 Million Migraine campaign, the room went dark. Dr. Newman then asked everyone to stand up with their cell phones lit to “shine a light on migraine_and_headache_hopemigraine.” This picture from the AHS Twitter feed shows a small portion of the room in this powerful moment.

The strength of the moment was reinforced when the first presenter of the day, Dr. Dawn Buse, asked everyone in the audience with migraine to stand. Three-quarters of the room stood. She then asked everyone who had a loved one with migraine to stand. I don’t believe anyone in the room remained seated.

“These people care,” I thought so many times throughout the conference. I saw so many doctors, physician assistants, nurse practitioners, nurses and psychologists who are passionate and enthusiastic about headache medicine. They are frustrated about lack of funding and the stigma of headache and migraine, but they care deeply about and are dedicated to their patients. They are excited – ahem, cautiously optimistic – about the CGRP drugs that are in development for migraine as well as the neuromodulation treatments that are on the horizon (like transcranial magnetic stimulation and vagal nerve stimulation, both of which are noninvasive and should be available to patients soon).

This is the third year I’ve attended this particular conference and the fourth headache conference I’ve been to. The energy felt different. Maybe it was because I felt better and was able to engage more, but the enthusiasm and optimism seemed stronger than I’ve noticed before. Even more encouraging was the number of people new to headache medicine, mostly fellows in their early days of specialization, who attended the conference.

Yes, research for migraine and all headache disorders is underfunded. Yes, the arsenal of treatments is still nebulous and it’s hard to pin down what might help any individual patient. Yes, the stigma is still enormous. Yes, there is still a small portion of patients for whom it is difficult to find the right treatment. But the field is making progress and it’s being led by enthused and engaged providers who truly care for patients. The number of academic headache centers is on the rise, as is the number of fellows being trained in headache medicine each year.

I was already full of hope about the future of migraine treatment. This conference reinforced that my migraine and headache hope is well-placed. The tide is turning. It’s one of the many things I’m giving thanks for this week.

Want even more hope? Watch this interview with headache specialist and researcher Peter Goadsby. It’s well worth your eight minutes. (Many thanks to  Timothy for sending me this.)

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New Daily Persistent Headache Research News

New daily persistent headache (NDPH) is “rare” and “poorly understood;” there is “no known treatment for NDPH.” These statements, which are from abstracts of two studies that were presented at the American Headache Society’s conference in June, succinctly capture the frustrations of people living with NDPH. These studies provide some insight into NDPH.

Characteristics & Precipitating Factors of NDPH

An examination of patients with NDPH at Stanford’s headache clinic revealed some interesting details about the characteristics of NDPH:

  • Patients most often described the pain as pressure-like and in the front of the head
  • 75% said the pain was on both sides of the head (not one-sided, like migraine commonly is)
  • 69% had migraine-like features to their headaches (46% of those had photophobia, 46% had phonophobia, 37% had nausea)
  • 17% had a history of episodic migraine or another headache disorder prior to the NDPH diagnosis
  • 53% had a family history of headaches

In addition, 75% of patients could identify an event or illness that immediately preceded the headache’s onset:

  • 48% had an infection (usually viral)
  • 26% had undergone recent surgery
  • 7.4% had physical trauma
  • 7.4% had psychological stress
  • 11% had another precipitating event

This research is important to both understand NDPH better and to help classify whether it is a primary or secondary headache disorder, which can influence how it is treated.

Botox for NDPH

Perhaps more interesting for people with NDPH is a study of Botox as an NDPH treatment. In this study, 22 patients received Botox injections and 95.4% percent had multiple rounds of injections. Following the injections:

  • 4.6% of patients had 21-30 headache-free days a month
  • 18.1% had 11-20 headache-free days a month
  • 9.1% had 0-10 headache-free days a month
  • 68.2% had no decrease in headache days

Researchers also looked at a reduction in pain severity.

  • 13.6% had a greater than 50% decrease in headache severity
  • 54.6% had less than a 50% decrease in headache severity
  • 31.8% had no change in headache severity

The numbers aren’t staggering, but 32% of patients did have at least some headache-free days with Botox. That’s not trivial for people who have received no other relief.

This was a small retrospective study. It’s results point to the need for more research on Botox for NDPH.

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An Urgent Request for Cluster Headache Treatment

Oxygen is one of the few effective cluster headache treatments, a viciously painful headache disorder that can be disabling. Several years ago, Medicare decided to stop covering it for cluster patients. The American Headache Society appealed to no avail. Now, Nebraska Senator Johanns and Delaware Senator Coons are trying to get the decision reversed and are currently circulating a letter for other senators to sign. The more senators who sign the letter, the higher the chance of success.

Please contact your senator TODAY to ask them to sign the letter requesting that Medicare reconsider covering oxygen for cluster headache treatment. And I do mean today — senators must sign the letter before 5 p.m. ET on Monday, May 19 Thursday, May 22. All you have to do is follow this link, fill out the form and click “submit.” The next page lists your senators as recipients and has a letter already written. You can edit the letter, if you’d like, or just add your name at the bottom and click “submit.” That’s it. I just did it and it literally took less than a minute.

Even if you don’t have cluster headache, please submit a request in the spirit of solidarity. Any recognition of the severity of any headache disorder and improving access to treatment is a win for all of us.

5/19/14: The deadline for senators to sign has been extended from today to Thursday. If you haven’t submitted your comment, you still have time! As of 8 p.m. ET today, nine senators have agreed to sign the letter.

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Gratitude

Having just drafted a post on gratitude for Migraine.com, the topic was fresh in my mind when I couldn’t sleep the other night. Instead of obsessing over why I was tossing and turning, I mulled over things I am thankful for. Each day I list three things I am grateful for as part of my strategy to keep chronic migraine from overwhelming me; this is more of a global list. As I feel like I’ve been a complainer on here lately, I wanted to share it with you all so you see that I’m not miserable and depressed! And to share how rich a life can be even with chronic illness.

  • A husband who understands how debilitating a migraine attack is and often has a better grasp on how I feel than I do.
  • My family for being loving, caring and messy in the way only family can be.
  • Migraine friends who truly get what my days are like and non-migraine friends who try.
  • The people I get to connect with through this blog. I’m not able to be as connected as I’d like, but everyone who reaches out to me touches my heart and is in my thoughts.
  • Old friends who wait patiently while I burrow in my self-imposed migraine nest of rarely communicating with anyone.
  • My sister, who keeps calling, texting and playing Words With Friends with me even when I retreat into migraine solitude.
  • The amazing team of doctors that I kind of stumbled upon when I moved back here.
  • People who knew me before the chronic migraine became too severe to take Advil and ignore — the ones who are so understanding because they remember me as vivacious.
  • My nieces and nephew, with whom I was fortunate to see often when they were young. I’ve missed them so much the last five years, but am so proud of the teenagers they have become.
  • COBRA and pre-existing condition health care coverage, which allow my husband to pursue his dream of starting his own business.
  • Jack Kornfield’s guided meditations, which showed me how to heal, particularly Guided Meditations for Self-Healing.
  • Tara Brach, whose guided meditations and podcast talks have taught me how to experience emotions without being carried away by them. (She has also published a great book, but my favorite resources are those on her website, all of which are free!)
  • How to Be Sick, a book by Toni Bernhard that applies principles of Buddhism to life with chronic illness in a straightforward, non-preachy manner.
  • The Anatomy of Hopeby Jerome Groopman, which taught me that hope is not a blind wish, but the belief that one can live a good life against all odds.
  • Anne Lamott’s writing, especially in the writing guide Bird by Bird and her willingness to share imperfect, thought-provoking and hilarious missives on Facebook.
  • That I was able to attend some of the American Headache Society symposium and felt like my engaged, intelligent self while there. And for the dedicated, compassionate, caring physicians, psychologists and researchers I met there.
  • That Excedrin Migraine changed their ad in response to the outcry of The Daily Headache readers.
  • Getting into the groove of writing and that feeling when I get a sentence or phrase just right.
  • The friends who are so supportive of my writing.
  • Being able to read books again. Proof that chronic migraine can improve and we can get back the things we lost.
  • Doctors who pursue unlikely avenues of inquiry.
  • That I’m a natural optimist.
  • Pinterest for migraine distractions. Facebook for keeping me somewhat connected to the world even when I’m hibernating. And Words With Friends for giving me a chance to play with loved ones I rarely see.
  • Friends who don’t mind if I sit on their couch like a zombie because I’ve had a migraine for a week and need new scenery. Even when I smell like a zombie, too.
  • That I know what the basic structure of my book will be. No idea when I’ll have the energy and mental wherewithal to write it, but it will be a tool to help people with chronic illness live happy, rewarding lives.
  • Baking. Nothing I bake is safe for my severely restricted migraine diet, but the process of baking brings me so much joy.
  • Fall weather in Phoenix.
  • My adorable yellow house in Central Phoenix.
  • Oven roasted Brussels sprouts with garlic added. Really.
  • That sleep is usually easy.
  • The quirky, funny, unconditionally loving pets I’ve been so fortunate to live with. A pet is too much work for my life right now, but memories of Cricket, Kayla and Cleo keep me smiling.
  • That the 2012 presidential election is over.
  • My fantastic neighborhood yoga studio.
  • A year-round farmers’ market that’s indoors in summer.
  • The smell of rain in the desert.
  • My perfectly sized and shaped bathtub.

Yesterday I dreamed that a doctor told me I was all out of treatment possibilities and that suicide was my only option. I kept telling him that I wanted to live and he wanted to know why since I had such terrible and frequent migraines. I said, “Don’t you see, I have a great life? Of course the migraines are awful, but they aren’t the sum of my life. I have so much to live for.” I was so grateful to wake up and know that doctor was totally wrong. There is never an end to treatment options. It has been almost a year since I first felt the joy of finding a treatment that helps and I’m thankful for every day of improvement since then (even if I grumble about it sometimes).

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Pacing for the American Headache Society Symposium

The American Headache Society’s annual symposium is in Scottsdale later this week and I’ll be attending for the first time. Or to be accurate, I’m planning to attend the symposium as long as I’m not knocked out by migraine attacks. There’s a world of difference between attending and planning to attend. A difference you’d think I’d fully grasp after all these years with debilitating chronic migraine. Nope.

I imagined myself waking up early and attending the meeting sessions all day Friday and Saturday. Never mind that sessions begin at 8 a.m., two hours before I usually wake up. Never mind that feeling well enough to be out of the house for three hours on any given day is cause for celebration; doing so two days in a row is nearly unheard of. Never mind that I rarely shower before going out because it depletes my energy (this is a little tricky considering that my almost-nightly migraine attacks include night sweats — I can cope if I’m going somewhere anonymously, but am sensitive about it when I’m around people I know or want to make a good impression).

Although the idealized schedule of events rarely comes to fruition, I don’t usually remember that until I’m over committed. This time I was clever enough to see it a week before the event takes place. I’ve gone through the symposium schedule and made a list of sessions I most want to attend and have narrowed it down to a couple hours each day plus Thursday set-up for the TheraSpecs exhibit and dinner with Migraine.com folks. Ideally, I’ll take over the booth for short stints Friday and Saturday so Hart can catch his breath.

I have no idea how much of the conference I’ll be able to attend or if I’ll be of much help to Hart. Still, I’m patting myself on the back for recognizing my limitations (though I’m by no means happy about them) and creating a realistic plan. Starting off with reasonable expectations is far more promising than my usual approach of hitting the ground running, then crashing and knocking myself out for the rest of the weekend. If I can’t make it to all that I have planned, I won’t be blaming myself for overexerting and making myself sick.

Wish me luck. I hope to gather lots of good information to share with you. And I’m super excited to finally meet Teri Robert, Ellen Schnakenberg and Diana Lee in person!