Chronic Migraine, Community, Patient Education, Society

Welcome to Migraine & Headache Awareness Month!

The awesome advocates of the American Headache and Migraine Association have put together an impressive array of events and information for the June 2013 Migraine & Headache Awareness Month, all centered around the theme of Unmasking the Mystery of Chronic Headache Disorders.

The second annual Migraine & Headache Awareness Month Blog Challenge is underway with 30 days of movie-inspired prompts. Write for your existing blog or start a new one just for the month. If you don’t have a blog, you can respond to the prompts and post your insights on social media or write in a journal to share with those close to you. Even if you don’t show your writing to anyone else, writing down your thoughts about migraine or headache will raise your own awareness about its impact on your life. If you don’t start with yourself and your own beliefs, how can you influence anyone else?

Check the Fighting Headache Disorders blog daily for links to tons of blog posts. And be sure to read what the patient advocates at Migraine.com have to say in response to prompts (I’ll be writing four of them). Find bloggers’ favorite posts from the challenge in this month’s Headache Disorders & Migraine Blog Carnival.

Not a writer? You can participate in a Twitter challenge or daily photo challenge. Use social media to share facts about migraine and headache disorders (already compiled!) or post photos that document your life with migraine or headache. Be sure to tag your posts with one of the following hashtags so others can find what you share: #MHAM, #MHAM13, #MHAMBC (blog challenge), #MHAMTC (Twitter challenge), #MHAMPC (photo challenge)

Not a writer or social media user? Print out these migraine and headache disorder facts to hang in your office, community bulletin boards, or neighborhood telephone poles.

Phew, that’s a lot! I’m so appreciative of all these opportunities and can’t wait to see all the contributions.

Even if you don’t participate in any of these organized activities, I urge you to do at least one thing this month to increase someone else’s understanding of migraine or headache disorders. Maybe that’s describing to a non-migraineur how crippling a migraine attack is or telling someone who thinks migraine is “just a headache” about the numerous and varied symptoms a migraine can include. Perhaps you let someone who has mild, episodic migraine attacks that are treated with OTC meds know that may people get no relief from drugs, OTC or prescription, and others are disabled by daily migraine attacks.

Or you could do something even more difficult for most migraineurs — don’t diminish how severe your attacks are or pretend you feel better than you do. Oftentimes we choose to put on the masks that hide the severity of migraine. That may get us through our day-to-day tasks, but it also prevents others from having any real grasp on what life with migraine is truly like.

Chronic Migraine, News & Research, Society, Treatment

Time’s Almost Up: Comment to the FDA TODAY!

Have you told the FDA how important it is to include migraine in their new program? Tomorrow’s the final day to do so. Your participation is so crucial that I’ll beg you with lots of exclamation points and all caps: PLEASE, PLEASE SUBMIT YOUR COMMENT TODAY!!!

How? Just go to the FDA’s Prescription Drug User Fee Act Patient-Focused Drug Development Public Meeting and Request for Comments page and click the blue button that says “comment now.”

Add punch to your comment with these statistics and facts that Teri Robert compiled. In her in-person comment at an FDA meeting, she also included this startling information:

  • According to a World Health Organization analysis, migraine is responsible for more lost years of healthy life in the U.S. annually than epilepsy, multiple sclerosis, ovarian cancer, and tuberculosis combined.
  • Also according to that analysis, severe, continuous migraine is as debilitating as quadriplegia.

Migraine is unlikely to kill those of us who have it, but it sometimes feels like death would be a better alternative. Whether chronic or episodic, migraine wreaks havoc on our lives and our families. It deserves to be recognized and studied with the same resources as any other life-changing illness.

Books & Products, Friends & Family, Resources, Society

Explaining What Chronic Daily Headache and Migraine Are Like

Explaining to my family, friends and employers that my migraines are debilitating has been challenging. There are many misconceptions about headache disorders and migraine, so people don’t understand the difference between an occasional headache and CDH or migraine.

The best way I’ve found to let those around me know the seriousness of this illness is to let them see me in the throes of a migraine (which is not an easy feat). If the people in your life are willing to talk about your pain, there are many good resources to explain the severity of the illness.

The best resource I have found is a book called Chronic Pain and the Family, which I reviewed on Blogcritics. (If you decide to buy the book, I’d appreciate it if you went to Amazon through the link from my blog rather than Blogcritics — it helps pay for The Daily Headache.)

There are other good resources that won’t cost you anything, like these significant facts about migraine:

  • Between 28 million and 35 million (depending on which estimate you look at) Americans have migraines
  • Of these migraine sufferers, 91 percent aren’t able to function normally during a migraine
  • An estimated $17 billion in health care and lost labor costs result annually from adults suffering from migraines

The National Headache Foundation has terrific information on how headache affects a sufferer’s life. This fact sheet (PDF) describes migraine and its suspected mechanics. It even recommends a children’s book that explains the disease to kids. ACHE also has good information.