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An Ideal Day, Migraine-Free or Not

National Migraine Awareness Month Blog Challenge, Day 9: “Daydream Believer.” Describe your dream day — without a migraine to hold you back.

Describing an ideal migraine-free day is empowering for many people, bolstering their hope and motivation. For me it is distressing, as it threatens the acceptance of my illness that I’ve fought so hard for. Part of accepting that I have chronic migraine and chronic daily headache has been understanding that I may never again have a headache-free moment. I do not strive to be pain-free, but to live as well as possible given my circumstances. This doesn’t mean I’ve given up my search for relief — I will be overjoyed if treatments ultimately result in the cessation of my headaches and migraines — but that I can be happy even though I have migraine and chronic daily headache.

I try to make each day as perfect as possible. If a migraine attack dominates the day, “perfect” may be getting settled on the couch with a good book. On other days, I seek to do what I need or want to do in the time I feel well enough to do so. If I waited to be migraine-free to enjoy my ideal day, I would stew in resentment until it arrived. I try to make every day, however mundane, as daydream-worthy as possible. That’s one of the beautiful, torturous lessons of chronic illness.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by Fighting Headache Disorders.

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Help Make Migraines Visible: National Migraine Awareness Month, June 1-30

Help Make Migraines Visible, the theme of this year’s National Migraine Awareness Month, sponsored by the National Headache Foundation is full of opportunities for you to learn more about migraine* and a chance for you to help others understand what migraine is and what its like to live with this oft-dismissed disorder. This isn’t a sit-back-and-watch awareness event, but one that engages those most knowledgeable about life with migraine — patients! — to help spread the word. You don’t have to commit to anything major, just speak up through social media or your blog, if you have one. Patient advocates have already done a lot of the leg work to get you started!

  • Call to Action! 50 Tweets for Migraine Awareness: This is soooo easy — all you have to do is copy and paste! Patient advocate Ellen Schnakenberg has created 50 different tweets of migraine facts, complete with hashtags, for you to copy and share on your preferred form(s) of social media.
  • National Migraine Awareness Month Blog Challenge: 30 blog prompts for the 30 days of June, created for you by the folks at Fighting Headache Disorders, Teri Robert and the aforementioned Ellen. If you don’t have a blog, share your thoughts through Facebook. At the very least, check Fighting Headache Disorders each day for the blog prompts and which bloggers have written posts for that day. Share the most inspirational or helpful posts on your social media accounts to let friends and family learn a bit about migraine. Visit Migraine.com, where one of the site’s patient advocates, including moi, will be responding to a prompt each day.

I’ll be responding to prompts when I can, tweeting migraine awareness facts, and asking you all questions on Facebook. Follow TDHblog on Twitter and like The Daily Headache on Facebook so you don’t miss a bit!

*NHF will host four online chat sessions with experts and a free educational event in Chicago, and will be re-introducing its Migraine Masterpieces art contest.

 

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Study: Chronic Migraine is Disabling and Severely Affects the Ability to Lead a Productive Life

The National Headache Foundation‘s American Migraine Prevalence & Prevention Study data have been reanalyzed to reveal just how debilitating chronic migraine is. Chronic migraineurs have migraine episodes at least 15 days a month and most have pain every day. Approximately one million people -– mostly women -– have chronic migraine.

Key findings of the study, from a NHF press release:

Chronic migraine remains a largely under-diagnosed and under-treated medical condition.

While the vast majority of individuals with chronic migraine (87.6%) had sought care from a healthcare professional, just 20.2% of those with chronic migraine received a diagnosis of chronic migraine, chronic daily headache or transformed migraine. Another nearly 14% were told that they had rebound headache or medication overuse headache.

Migraine-specific acute treatments were used by 31.6% of respondents with chronic migraine. Almost half (48%) of the individuals with chronic migraine were satisfied with their acute therapies. A third of those with chronic migraine (33.3%) were currently using preventive medications.

Although most individuals with chronic migraine sought medical care for this disorder, the majority did not receive specific acute or preventive medications.

One in five chronic migraine sufferers cannot work due to the severity of their condition.

Over a 3-month period, 8.2% of the chronic migraineurs missed at least 5 days of work and school. Further, slightly more than a third (33.8%) of these sufferers reported at least 5 days of significant reduction in productivity during the same time frame.

Chronic migraine severely impacts one’s ability to lead a productive life.

More than half of those with chronic migraine (57.4%) missed at least 5 days of household work, and 58.1% reported a reduction in productivity in household work for at least 5 days within the last three months.

Chronic migraineurs also reported missing out on at least 5 days of family activities within the three month period.

“With one in five chronic migraine sufferers not being able to work due to the severity of their condition, the human and economic costs to these patients, their families and their employers are staggering,” said Suzanne E. Simons, Executive Director, National Headache Foundation. “This report shows there is much work to be done to help them get the proper diagnosis and treatment they need to be able to lead productive lives.”

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Headache Only One of Migraine’s Many Symptoms

More than half of people with migraine experience nausea, neck pain, or sensitivity to lights, sounds or smells during a migraine, yet few doctors regularly ask about symptoms other than headache. These findings, from a National Headache Foundation survey, include only a partial list of possible migraine symptoms.

Migraine Goes Beyond Head Pain
(National Headache Foundation press release)

Chicago, IL – August 13, 2008 – Migraine sufferers often experience a series of associated symptoms in addition to migraine head pain, according to a recent survey conducted by the National Headache Foundation (NHF). Survey results reveal that more than 50% of respondents said they frequently or always experience symptoms such as nausea, neck pain, or sensitivity to lights, sounds or smells when suffering from a migraine. Additionally, 78% of respondents said their healthcare professional does not regularly inquire about associated symptoms experienced beyond actual migraine head pain.

“It is extremely important for headache sufferers to talk with their healthcare professionals about symptoms occurring in conjunction with pain,” said Dr. Roger Cady, Vice President and Board member of NHF. “Diagnosis of migraine is based in part on associated symptoms or characteristics such as nausea, vomiting or sensitivity to lights but communication about the entire migraine experience aids your medical provider with proper diagnosis, understanding you, and your specific treatment needs.”

Of those respondents experiencing nausea or vomiting along with their migraine head pain, many reported having to delay taking migraine medication or taking additional medication to manage their nausea. Others said they alternate an injectable form of migraine medication instead of swallowing a pill.

In order to manage migraine head pain and associated symptoms, the majority of survey respondents said they try to maintain a regular sleep schedule, eat balanced meals and reduce stress.

Additional NHF survey results:

  • 78% of survey respondents reported missing work due to migraine pain and/or its associated symptoms.
  • 84% said they frequently or always experience throbbing pain on one-side of their head with their migraine.
  • When asked to rate their migraine pain on a scale of 1-10 with 10 being unbearable, 56% of respondents said their migraine pain is typically between a 7 and 8.

NHF’s tips for dealing with migraine head pain and associated symptoms:

  • Get help. Discuss the associated symptoms of your migraine with your healthcare provider. S/he can help you determine your treatment options.
  • If you experience nausea or vomiting as associated symptoms of your migraine, talk with your healthcare provider about other forms of your medication such as injections, nasal sprays or tablets that do not require drinking water to take them.
  • Avoid identifiable migraine triggers and practice a healthy lifestyle.
  • Track your migraines. Write down when your migraines occur. Bring your results to your healthcare professional to review. A free downloadable headache diary is available at www.headaches.org.

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Seattle Doctors, Neurologists & Headache Specialists

I’ve been asked about Seattle headache specialists and neurologists more times than I can count in the last month. My experience is quite limited, but the online support group and forum has a thread with recommendations for Seattle headache doctors. If you have any to add, please do! You can also check What Do You Think of Your Doctor, an earlier post with lots of good suggestions, some in Seattle, some elsewhere.

Here’s what I know:

I’ve seen Sylvia Lucas at UW and Sheena Aurora at Swedish. They are both kind and caring. We all click with different people, of course, but I found Dr. Lucas to be more patient-oriented and Dr. Aurora to be more research-oriented. Both have at least three-month long waiting lists. It took six months to get into my first appointment with Dr. Lucas and follow-ups are usually scheduled two months out. Dr. Aurora is more like three months for an initial appointment.

A friend sees Patrick Hogan, an osteopathic neurologist, in Tacoma. His number is (253) 284-4488. He requires a doctor’s referral regardless of your insurance and your family/general physician will have to contact his office to get you in.

For other doctors in the Seattle area — or anywhere else in the US, check the National Headache Foundation’s physician finder or the American Headache Society’s health care provider search.

8/14/14: Many readers have lamented Dr. Elena Robinson‘s move to Vancouver. She’s back in Seattle and is in practice with the University of Washington.