Chronic Migraine - Rewrite Your Day Update

RewriteYourDayButtonA few weeks ago, I told you about the Rewrite Your Day Chronic Migraine awareness campaign in my post Chronic Migraine Awareness and an Opportunity to Relive a Lost Day.

The Rewrite Your Day campaign is dedicated to raising awareness about Chronic Migraine and bringing attention to its heavy burden and potentially devastating impact on an unprecedented scale. People living with Chronic Migraine have a diagnosis of migraine and experience headaches on 15 or more days per month with headache lasting four hours a day or longer.1,2,3 People with Chronic Migraine are invited to the Rewrite Your Day website to share their stories about important days and events that this devastating disease has caused them to miss. To that end, celebrity event planner Mindy Weiss and a panel of five advocates (including me!) are selecting 15 eligible people who shared their stories to re-create that special moment or day in their lives.

Serving on the judging panel:

I’m truly honored to have been asked to serve on the judging panel. My experience so far as a judging panel member is… well, it’s difficult to put into words because of all the emotions that it’s churned up. It’s touching, heart-breaking, excruciating, and extremely challenging. It’s also humbling, inspiring, electrifying, and exhilarating.

The entries evoke disquieting memories:

It’s going to be difficult to select “winners,” but the first round of winners are to be announced soon, so the selections have to be made. As I read them, the impact of the entries is staggering. They evoke disquieting memories of my own experience with Chronic Migraine and times when those nearly daily Migraines were like thieves stealing my life away from me. To say that what people have written is touching would be an understatement of the highest magnitude.

Imagine…

  • … missing your six-year-old daughter’s school play and her missing it as well because she was so disappointed.
  • … planning to renew your marriage vows with a special ceremony on your 10th anniversary, followed by a celebration with your family and friends, only to have to cancel it because of Chronic Migraine. Then imagine planning it again for your 15th, 20th, and 25th anniversaries and having to cancel all of those plans too.
  • … being a father of two young daughters and traveling six hours each way one weekend a month to see them, only to have yet another Migraine and not be able to do things with them.
  • … living the difficult life of an Army wife and caring for your children and family matters on your own while your husband is deployed, then being unable to participate in a special family trip when he arrives home from deployment.
  • … missing your daughter’s wedding, best friend’s wedding, your own wedding!

If you have Chronic Migraine, you don’t have to try very hard to imagine those scenarios. You may have lived some of them yourself. If you don’t have Chronic Migraine, consider the examples above to be mini peeks into the lives of those who do.

You can still enter:

If you have Chronic Migraine, it’s not too late to enter the Rewrite Your Day contest. Entries will be accepted through December 30, 2011. Sharing your story not only enters you in the contest, it adds to the collection of real experiences shared by real people that will be available for the public to read. This will help other Migraineurs know they’re not alone and it will give the general public a look into the lives of people with Chronic Migraine to build awareness and reduce the stigma associated with Migraine and Chronic Migraine. If you suspect you have Chronic Migraine, please visit RewriteYourDay.com to find a doctor who specializes in the diagnosis and management of the condition.

Some Migraineurs have told me they’re hesitant to enter the contest because they’re concerned that their Migraines and/or headaches are so frequent that they’d be unable to participate if they were to win the contest. We fully understand concerns about Chronic Migraine keeping people from being able to relive moments or events. Here’s what we suggest –

Please go ahead and share your story about an important event or day that Chronic Migraine caused you to miss. Or, alternatively, share your story about something Chronic Migraine prevents you from doing. It could be cleaning your house and washing the windows, preparing a nice family holiday dinner, painting your bedroom and installing darkening shades and draperies, or any number of things. It could even extend to sharing how Chronic Migraine caused you to lose a job.

If you choose the alternative I’ve described, after you share your story, write that you’re concerned about your Chronic Migraine preventing your reliving a moment or event. Then tell us something we could arrange that you could handle. Examples: hiring a cleaning service to clean your house, hiring a chef to prepare that holiday dinner, bringing in someone to redo your bedroom for you.

The goal of asking people with Chronic Migraine to share these experiences is to demonstrate how debilitating the disease can be and how much Chronic Migraine can take from people. We’re convinced that reading about real experiences of real people can go a long way in raising awareness of Chronic Migraine, help the public understand it better, and help reduce the stigma of Chronic Migraine and the burden that accompanies it.

Visit the Rewrite Your Day website at www.RewriteYourDay.com for:

  • the contest information and entry form,
  • information about Chronic Migraine,
  • finding a specialist who can diagnose and manage Chronic Migraine,
  • and more.

Disclaimer: I am under contract to Allergan, Inc., for the Rewrite Your Day campaign as a consultant and one of the panel of advocates selecting the winners, but it should be noted that I am receiving no financial compensation for my participation.

____________
Resources:

1 Headache Classification Subcommittee of the International Headache Society. The International Classification of Headache Disorders: 2nd edition. Cephalalgia. 2004;24(suppl 1):9-160.

2 Olesen J, Bousser M-G, Diener H-C, et al; Headache Classification Committee. New appendix criteria open for a broader concept of chronic migraine. Cephalalgia. 2006;26(6):742-746.

3 Manack A, Turkel C, Silberstein S. The evolution of chronic migraine: classification and nomenclature. Headache. 2009;49(8):1206-1213.

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© Teri Robert, 2011
Last updated November 17, 2011


2011 Putting Our Heads Together Poetry Contest Winners

WinnersAre2011 Migraine and other headache disorders can have devastating effects on our lives. They can leave us feeling isolated, frustrated, angry, and hopeless. Writing can be therapeutic, and it can be a great way to show others what these disorders can do to our lives; a great way to bust some of the myths associated with them.

For those reasons, the Putting Our Heads Together Poetry Contest is held each year. As always, we received many good entries this year. As always, it was very difficult to choose the "winners." The truth is that everyone who was strong and brave enough to submit a poem is a winner, but this is a contest, so our judges did their best to choose them.

So, without further ado, the winners are...

1st Place
A Parent's Lament by Sandra Jaspen Hughes

2nd Place
Fire and Ice by Laura Merleau

3rd Place
Wednesday by Juliette Guarino

4th Place
Volcanic Collapse by Patricia Frolander

5th Place
Someday by Dave W.

6th Place
Forced Entry by Laura K. Patterson

Honorable Mention:
Alice by Kala Guidry
The Battle by Diana Van de Kamp
A Billion Particles of Light in the Migraine Brain by Laurel Marie Sobol
Brain Freeze by Zaina Sukkarieh
Careful by Darlene Blair
Crippling by Navarro
The Dance and Cry by Christopher Aaron Chapman
Headache by Kathryn Burkett
Headache by Jacob Oet
How a Snake Made My Headache by Stella Lalicata
How Nice to Have a Friend by Carol H. Jewell
I am pain by by Zev J. Meyers
Invisible by Cindy Smalletz
kNōw by Kimberley Formosa
Migraine by Jackie Feffer
My Headache by Joy Lalicata
My Last Migraine by Cindy Smalletz
The Obligation by Kathy B. Swann
The People Who Don't Care by Brenna Gray
A So-Called Life by Janice
There Is Nothing I Can Do by Brenna Gray
Thief in the Night by Darlene Blair
Uninvited Guest by Joanna Barker
Untitled by Janice

All of the poems that were entered and met the rules of the contest have been published on Help for Headaches and Migraine. For a listing of all of the poems and links to them, plese see our Winners Page.

Thank you to all who entered, and congratulations to all our contest winners! Our 2012 contest will open for entries in February of 2012.

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© Teri Robert, 2011
Last updated April 19, 2011


Celebrating Fred Sheftell - Friend, Migraine Specialist, Great Man

Kruz-me-sheft The Migraine and headache world experienced a great loss this week when Dr. Fred Sheftell died following a long and brave fight with cancer. In the photo to the right, that's Dr. Sheftell on the right with Dr. John Claude Krusz and me.

Dr. Sheftell filled many roles during his life...

  • husband to Karen
  • father to Lauren and Jason
  • Migraine and headache specialist
  • author - 11 books and over 200 peer-reviewed articles
  • researcher
  • co-founder of the New England Center for Headache
  • past president of the American Headache Society
  • founder of the World Headache Alliance
  • a member of the Migraine Research Foundation's Medical Advisory board
  • chairman of ACHE the American Headache Society's Committee for Headache Education

Fred was also my friend and mentor. When I told him that I had a contract with HarperCollins to write Living Well with Migraine Disease and Headaches, he offered to write the forward, and from then on, it was "our book." He welcomed me to American Headache Society meetings, was always willing to answer any questions I had, and always challenged me to figure things out and keep learning. The other day, I described him as, "Widsom, knowledge, generosity, and kindness -- all wrapped up in a package with arms that were quick with a hug."

Today, the Migraine Research Foundation send out a notice saying, "It is with profound sadness that MRF mourns the death of Dr. Fred Sheftell. A member of our Medical Advisory Board since 2007, Dr. Sheftell was a visionary leader, a Migraine activist, a wise advisor, and a champion of MRF. He will be sorely missed."

Fred was also a great musician. He combined his talent for music with his passion for treating Migraine and other headache disorders to do a CD called Migraine Blues that was originally for continuing medical education. Later, videos of the songs were released on YouTube and the songs were released on iTunes. Here's the video of the title song, Migraine Blues:

I'm going to miss Fred a great deal. He was truly one of the "good guys." I hope you'll watch the video above and join me in celebrating his life. If you knew him and want to do something in his memory, his family has asked that donations be made to the American Migraine Foundation.

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© Teri Robert, 2011
Last updated April 14, 2011


Migraine Pearls or Onions? 3/16/11

PearlsOrOnions125 When it comes to online Migraine information, the quality of what we find has quite a wide range. It can be bright, polished, and valuable, or it can be... well, rough and stinky.

This feature, "Migraine Pearls or Onions?," highlights both the Migraine Pearls I come across online and the stinky Migraine Onions.

Today's Migraine Pearl and Onion came from the same incident, a 12-year-old Texas student who went to the school nurse because she didn't feel well and ended up suspended from school and orderd to attend an alternative school for 30 days for illegal drug use.

On February 21 of this year, Aliah Rowe went to school despite not having felt well for a few days. She had a headache and stomach ache. By mid-morning, she felt bad enough that she went to see the school nurse. Here's an abbreviated version of what happened. The nurse thought Aliah looked and behaved as if she'd used a drug or alcohol, so she called in a sheriff's deputy who was the school police liason. Without contacting Aliah's parents, they then conducted field sobriety tests, called in the school counselor, and accused Aliah of drug use.  At that point, Aliah's mother was called, and she took her from the school to a local hospital where she had Aliah's blood and unine tested for drugs and alcohol.

The school district suspended Aliah from school for three days and ordered her to attend the Texas City school district's alternative learning campus for 30 days. Aliah and her mother appealed this decision twice. Both times, they submitted the negative results of the drug testing as well as a statement from a doctor stating that Aliah's headaches may have been Migraines and that Migraines could have cause the symptoms and behavior that the nurse and deputy observed. Both appeals were denied.

Yesterday, saying only that they'd received "new information," school district officials announced that they'd reversed their decision, and Aliah will be allowed to return to her regular school on Monday when students return from spring break. You can read more details of this incident in Texas School Suspends, Punishes Student for Migraine.

Pearl100 So, first up...today's Migraine Pearl... today's pearl goes to:

  • Aliah's mother, Cynthia Murray;
  • Dr. Rayne Rouce, the doctor who examined Aliah and wrote to the school district;
  • T. J. Aulds of the Galveston County Daily News, whose comprehensive reports on this incident may be responsible for the reversal of the school district's decision;
  • and everyone else who supported Aliah through this ordeal.

Onion100 And, today's Migraine Onion. Today's onion, of course, goes to:

  • the school nurse at Blocker Middle School in Texas City,
  • the sheriff's deputy who responded to her call and treated this student so poorly,
  • the school counselor, and all of the school district officials who played a part in this fiasco.

What happend on February 21 when Aliah went to the nurse's office was bad enough. Yet school officials made matters even worse by refusing to accept the negative results of the drug testing that was performed and the word of the doctor who examined Aliah.

The stigma associated with Migraine disease is strenghtened when such indicents occur. These school officials owe Aliah a huge apology.

If you'd like to make a suggestion for a
Migraine Pearl or a Migraine Onion,
please leave me a comment!

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© Teri Robert, 2011
Last updated March 16, 2011


Keeping Up with Migraine Information

POHTButton Do you like to keep up with information about Migraine and other headache disorders? It can be hard to do, especially if you're in pain and don't feel like surfing the Internet.

The Putting Our Heads Together email newsletter can help. The newsletter goes out on Mondays, and it's totally free. I respect your privacy, and your name and email address will NEVER be shared with anyone.

Putting Our Heads Together includes links to:

  • Information from www.HelpForHeadaches.com
  • Information from www.MyMigraineConnection.com
  • Blog entries by Nancy Harris Bonk, me, and other Migraine bloggers
  • Information from nonprofit organizations including the American Headache Society, American Migraine Foundation, Migraine Research Foundation, and others.
  • More...

You can subscribe to Putting Our Heads Together from the subscription box in the left column of this blog.

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© Teri Robert, 2010
Last updated August 14, 2010


Today's Free Migraine Newsletter

Puz-only-btn Do you find it difficult to keep up on Migraine information? My FREE Putting Our Heads Together email newsletter can help!

If you'd like to see an issue, you can look at TODAY'S ISSUE.

That's what you get every week when you subscribe.

Delivered to your email, the newsletter includes links to...

  • treatment news;
  • research news;
  • articles about different types of Migraines and headaches;
  • tips for living with Migraines;
  • news and information from Migraine and headache organizations such as the NHF, MRF, and AHS;
  • places to ask questions and get answers;
  • quizzes to test your Migraine and headache knowledge;
  • fun word games;
  • and more!

Putting Our Heads Together is delivered to your inbox on Mondays. When Monday is a holiday, it may be delivered on Tuesday.

I know how hard it can be to look for information, especially when your Migraines or headaches are frequent. That's why this newsletter exists.

Subscribing to Putting Our Heads Together is easy. Just fill in the subscription box to your left; at the top of the left column of this blog.

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Page copy protected against web site content infringement by Copyscape© Teri Robert, 2010
Last updated June 21, 2010

Migraine News, Tips, and More

Puz-only-btn Do you find it difficult to keep up on Migraine information? My FREE Putting Our Heads Together email newsletter can help!

Delivered to your email weekly, the newsletter includes links to...

  • treatment news;
  • research news;
  • articles about different types of Migraines and headaches;
  • tips for living with Migraines;
  • news and information from Migraine and headache organizations such as the NHF, MRF, and AHS;
  • places to ask questions and get answers;
  • quizzes to test your Migraine and headache knowledge;
  • fun word games;
  • and more!

Putting Our Heads Together is delivered to your inbox on Mondays. When Monday is a holiday, it may be delivered on Tuesday.

I know how hard it can be to look for information, especially when your Migraines or headaches are frequent. That's why this newsletter exists.

Subscribing to Putting Our Heads Together is easy. Just fill in the subscription box to your left; at the top of the left column of this blog.

Live well,

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Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

 

Follow me on    or 


 

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Page copy protected against web site content infringement by Copyscape© Teri Robert, 2010
Last updated June 1, 2010

Free Migraine Newsletter: Subscribe Now

POHTBanner
Many of you are subscribed to our newsletters on MyMigraineConnection.com but have asked for a newsletter that has more links to my newest research articles and other content. In response to your requests, I'll be bringing back my Putting Our Heads Together newsletter with more information than ever before. The new newsletter will include links to:
  • new research articles
  • new articles on all aspects of Migraine and headache management
  • tips for living well while coping with Migraines and headaches
  • quizzes to challenge yourself
  • live Migraine chats
  • Migraine advocacy information
  • upcoming free Migraine and headache e-courses

The Putting Our Heads Together newsletter will be delivered to your email on Mondays so that if you also subscribe to our newsletters on MyMigraineConnection, you won't be overwhelmed by multiple newsletters on the same day. You can subscribe to this newsletter from our newsletter subscription page.

Live well,

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