Migraine and Headache Awareness Month Social Media Challenge

MHAM16SMC250June is Migraine and Headache Awareness Month, the month of the year when we put extra effort into raising awareness about Headache disorders including Migraine, Cluster Headaches, New Daily Persistent Headache, Post-Traumatic Headache, and literally hundreds of other Headache disorders.

For the last few years, we've had an Awareness Month Blogging Challenge during which we set topics or "prompts" for each day of Awareness Month, and participating bloggers each wrote their take on that topic. This year, to expand the Blogging Challenge to include more people, it has become the Migraine and Headache Awareness Month Social Media Challenge. For bloggers used to the Migraine and Headache Awareness Month Blogging Challenge, hopefully, you'll use these prompts as you have in previous years. This isn't meant to take away the blogging challenge. It's evolved to involve even more people.

Here's how it works:

  • Below, I'm going to post either a fact about a Headache disorder for each day of June.
  • To participate in the Social Media Challenge, you need to use the fact in your blog and /or on one or more other social media platform - Facebook, Twitter, Instagram, etc., using the hashtag #MHAM.
  • You don't have to manage to participate every day to accept the challenge. We know that some of us simply won't feel up to it every day, so participate as much as you can.
  • Wherever you can, please use the Social Media Challenge logo (without changing it), which you can see here. I'll add it in a few different sizes at the end of this post so you can get it.

I'm going to post all of the daily prompts now so you'll have them in advance. Here they are, complete with hashtags:

  1. 75% of the world's adults had a #Headache or #Migraine in the last year. #MHAM
  2. The majority of people w/ #Headache and #Migraine are not diagnosed. #MHAM
  3. Accurate diagnosis of #clusterheadaches can take years. #MHAM
  4. @WHO says #Migraine is the 8th most disabling disease in the world. #MHAM
  5. #Migraine can and does kill through stroke and suicide. #MHAM
  6. Patients with #NDPH usually know the exact date their daily #headache started. #MHAM
  7. Social Stigma increases the burden of living with #Migraine. #MHAM
  8. #Migraine is a neurological disease caused by genetics and a hypersensitive brain. #MHAM
  9. #Headache Disorders cost the U.S. economy more than $31 billion each year. #MHAM
  10. #Migraine significantly increases risks for other serious diseases incl heart disease. #MHAM
  11. Pain of #clusterheadaches usually starts over one eye. #MHAM
  12. #Headache disorders are the most prevalent neurological disorders #MHAM
  13. #Migraine affects all ages from pre-verbal children to the elderly. #MHAM
  14. There is no cure for #clusterheadaches or #Migraine. #MHAM
  15. @WHO says severe #Migraine attack as debilitating as quadriplegia. #MHAM
  16. Most people see up to 5 doctors before an accurate #Migraine diagnosis. #MHAM
  17. Suicide attempts are 3 times more likely in people with #Migraine with aura. #MHAM
  18. Depression and suicide are common in patients with #clusterheadaches. #MHAM
  19. #Headache and #Migraine patients educated about their disorder have better outcomes. #MHAM
  20. #Migraine is no longer considered vascular; it's neurological. #MHAM
  21. There are NO treatments originally developed for #clusterheadaches. #MHAM
  22. Neurologists aren't always #Headache and #Migraine specialists and vice versa. #MHAM
  23. @WHO reports #Migraine responsible for at least 1% of total US medical disability. #MHAM
  24. Most med students get only 4 hours education on ALL #Headache disorders. #MHAM
  25. #Headache disorders are responsible for nine percent of all US lost labor productivity. #MHAM
  26. A #Migraine attack isn't a #headache. It can occur with NO headache at all. #MHAM
  27. #Clusterheadaches have earned the nickname suicide headaches. #MHAM
  28. There are no diagnostic tests to confirm #Migraine or most other #Headache disorders. #MHAM
  29. People with #ChonicMigraine have a #Migraine more often than not. #MHAM
  30. #Migraine causes Americans to miss 113 million work days per year. #MHAM

Here are some hashtags you may want to use. These have all been defined at www.tagdef.com.

  • #MHAM Migraine and Headache Awareness Month
  • #clusterheadaches Cluster Headaches
  • #migraine Migraine
  • #headache Headache
  • #chronicmigraine Chronic Migraine
  • #hemiplegicmigraine Hemiplegic Migraine

Thanks go to Tammy Rome for her help in putting together a prompt for each day. Thanks, Tammy!

If you have any questions, please email me by using the email link at the top of the right column of this page.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

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4th Migraine and Headache Patient Conference - Why Are You Waiting?

2016Conf-325The date will soon be upon us for the American Headache and Migraine Association's (AHMA) fourth annual conference for patients, family members, and friends. This year's conference will be held on Sunday, June 12, in San Diego, California.

There are great sessions scheduled including:

  • What's New and Coming Up in Migraine and Headache Treatments
  • Living with Headache Disorders and the Psychological Fall-Out
  • The Future Role of Technology in Headache Medicine
  • Integrative Headache and Migraine Treatment
  • The Three Forms of Advocacy

The speakers for this year's conference include:

  • Dr. Elizabeth Seng
  • Dr. Richard Lipton
  • Dr. Rob Cowan
  • Dr. Brian McGeeney

There will also be a special session for family members and friends who need information and support for helping those they care about who are living with Migraine and other Headache disorders.

Morning and afternoon breaks and a reception at the end of the day will give you time to meet and get to know other conference attendees. Lunch is included in the registration fee, and the annual AHMA membership meeting will be conducted during lunch.

Frangance-Free-100

 

Since fragrances are such a strong trigger for so many people with Migraine, this is a fragrance-free event. Please do not wear perfume, cologne, aftershave, scented lotions, or other products with fragrance.

 

San Diego is a busy place in June. So, why are you waiting? Register for the conference and make your hotel reservations now!

For more information, or to register for the conference, please visit AHMA's conference page.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

Follow me on    or 
 

Page copy protected against web site content infringement by Copyscape© Teri Robert, 2016.

 

 

 


Migraines and Our Migratude - Let's Explore!

ExploringMigratude166Hello and Happy New Year to all of my extended Migraine and headache family!

Some people have asked me about my resolutions for the new year. I'm taking a different approach this year, and I'm not making any resolutions. Although resolutions are great for many, people, I've found that they can make me feel like I've failed when health issues prevent achieving them.

So, instead of making resolutions and asking you to share yours, I've decides to introduce a new concept and an initiative to go with it - one that we can utilize all year, every year, to help us improve our health and our quality of life.

In developing this concept, I wanted a new word that would truly reflect what I was trying to say. So, using the process of word devivation, here's our new word...

I combined our aptitude for learning
about and coping with Migraines

 with

our attitude toward Migraine management
and living with Migraines

to get the word

Migratude.

Aptitude:

The knowledge we acquire about Migraine disease and our treatments is one of the most valuable tools we'll ever have. With that knowledge, we can:

  • be more effective working as treatment partners with our health care team;
  • make any treatment decisions that we need to make when we get a Migraine;
  • teach family, friends, coworkers, and others about Migraines;
  • and much more.

We also need to have or develop good coping strategies for living with Migraine. Some of us can do that with the suport of fellow Migraineurs, friends, and family. Others may find that it helps to work with a psychologist or psychiatrist for assistance. Either way, our attitude toward coping with Migraines is critical too. 

Attitude:

Our attitude is sometimes overlooked, never addressed at all, and that's a huge mistake. Have you ever taken a psychology class? If so, you may remember the priciple of self-fulfilling prophecy. I am most certainly NOT saying Migraines are "all in our heads." What I AM saying is that our attitude is a big part of the equation for good Migraine management. For example: If we start a medication with the attitude that it's going to be a failed attempt or that we'll have side effects, that's most likely exactly what will happen because our minds are so powerful. SO, let's use that power in positive ways.

The attitude we develop toward Migraine management and living with this disease has a very strong impact on many things, including:

  • how successful we are in working as treatment partners with our doctors and other members of our health care teams,
  • the success of our treatment plan,
  • how we interact with our support system,
  • our quality of life, and
  • much more.

Along with the coining of the term Migratude, I'm starting an ongoing Migratude initiative to look at what impacts our Migratude, how we can develop and refine it, and how we can support our fellow Migraineurs who need help improving and sustainging their Migratude.

The goal of the Migratude initiative is better health and a better quality of life for all of us.

So, what do you think? I hope you'll join me in this initiative and develop your Migratude with me.

TERI-Migratude-300

Live well,

PurpleRibbonTiny
 

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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.

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© Teri Robert, 2013
Last updated January 7, 2013.

 


Migraine Awareness Month Blogging Challenge #16: "Lead, follow, or get out of the way."

AwarenessMonth2012BC2

Today's prompt is:

Migraine Awareness Month Blogging Challenge #16: "Lead, follow, or get out of the way."  Which role fits you and why?

Although I would prefer that none of these three categories exist and we all work equally within a community, I have found that in practice, it rarely works this way.  Those who know me often hear me say “The cream eventually rises to the top.”  Given enough time, every community member finds the spot he/she is most comfortable. 

 As a result, two of these categories fit me I’m afraid – Lead, and Follow.  Although I’m not much of a get out of the way anymore, I do like to be an Indian when I can, so from that perspective I even fit *get out of the way*.

As a kid, I was the painfully shy, quiet one that didn’t want to stick out.  I loved being a get out of the way'er because there was less stress and it was easier to blend in that role.  When in grade school, I began doing art work that was getting noticed.  It was hard to stay in that get out of the way role after that, no matter how hard I tried.

By the time I was giving riding lessons and training horses, I had left the get out of the way role behind.  Get out of the way's don’t make good teachers, and they make lousy animal trainers.  Although that was where I was most comfortable, it wasn’t really where I belonged anymore.  It took a long time to come to terms with that and learn how to be comfortable as a leader.

When I first began helping other patients, I wanted to be a get out of the way'er.  I wanted to blend in and I stayed anonymous for a very long time trying to do that.  However, because I had so many personal experiences to share, I ended up often finding myself in leadership roles in my online communities, despite my best efforts.  I just couldn’t stand by watching people suffer when I had some of the answers to their questions and problems, and those skills to be a leader. 

Despite the fact that every one of these roles is vitally important to a community, it’s hard being in leadership roles! 

In the animal kingdom, most groups function on a hierarchal principle.  Typically there are alphas (leaders) and the leader’s best friends or number two’s (followers).  Then there is everyone else (get out of the way'ers).  Among the *everyone else* group there will be constant jockeying for higher positions and better status, because in the animal kingdom, this means a better chance at survival. 

Every once in a while, someone wants the leadership position and starts a fight to get it.  This is understandable in animal societies, but I like to think that in human society, with our ability to communicate verbally and work together with purpose and forethought, this jockeying for position should be unnecessary.

I have never felt that, in an ideal world, online communities should be run this way – we are all patients and all have similar experiences to share.  We gain or lose as a group depending on whether our groups are successful in what they are trying to accomplish.  The bottom line is, we are all valuable, and every time someone leaves a community, we are all the poorer for it.  There are all times when we should be leaders, followers, and times when we need to be getting out of the way so we can get things done. 

Have you stepped up into a leadership role within the Migraine community?  Do you consider yourself someone who is more comfortable following, or do you participate actively and the *get out of my way* position fits you best?  How do you think you would feel if you were thrust into another position?  Why?  We hope you'll let us know in your comments below...

~Ellen

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

To help raise awareness about Migraine, please Tweet this post with the hash tags #NMAM and #NMAMBC and share it on your Facebook page. Thank you!

 


Nominate and Thank a Migraine Activist

HealthActivistAward2011bIs there a Migraine health activist who has impacted your life and helped you live with Migraine disease? Someone who has helped you learn about Migraine, work better with your doctor or find a new doctor, who you feel advocates well for the Migraine community?

If so, now is a perfect time to tell them and the rest of the online community how much you appreciate their work and dedication.

WEGO Health is now accepting nominations for their first annual Health Activist Awards. Here are some of the basics from their Health Activist Awards FAQ:

What: The Health Activist Awards 2011 - a program created to reward Health Activists for their accomplishments.

Why: To recognize well-known Health Activists for their continue efforts and to showcase inspirational newcomers.

When: Nominations will officially begin December 1st, 2011.  Winners will be announced in January 2012.

How: We'll take nominations from the entire health community through the end of December 2011.  A panel of Health Activists and WEGO Health Team members will then review nominations to pick winners.

There are several different awards, and you can nominate someone for any of them. You can find more information about the Health Activist Awards 2011 and the nomination form on WEGO Health's Health Activist Awards 2011 page.

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.

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© Teri Robert, 2011
Last updated December 7, 2011


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.

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.

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© Teri Robert, 2011
Last updated November 17, 2011


Chronic Migraine Awareness and an Opportunity to Relive a Lost Day

RewriteYourDayButton Every day, Chronic Migraine robs Migraineurs of precious special moments and days; moments that they’ll never get back.

I’m totally thrilled and awed to be able to share important news with you today! Allergan, Inc., is partnering with the National Headache Foundation (NHF) and HealthyWomen to launch the Rewrite Your Day campaign to raise awareness about Chronic Migraine and bring attention to the heavy burden and potentially devastating impact of the condition.

Beginning this month (September, 2011), people can visit the campaign website (www.RewriteYourDay.com) to enter a contest to be one of 15 people with Chronic Migraine who will be selected to work with celebrity event planner Mindy Weiss to re-create a special moment or day in their lives that was missed as a direct result of Chronic Migraine – be it their wedding, anniversary, birthday party, or other event. Entrants must share a personal story of a special moment that was missed due to Chronic Migraine and how they would “rewrite” that day if given the chance.  Visit the campaign website for the Official Rules of the contest.  Winners will be selected by Miss Weiss and an independent panel of five health advocates.

I’m extremely honored and excited to be one of those health advocates! The other four advocates are:

  • Roger K. Cady, MD, Associate Executive Chairman, National Headache Foundation
  • Elizabeth Battaglino Cahill, RN, Executive Director, HealthyWomen
  • Richard Lipton, MD, FAHS, Professor and Vice Chair of Neurology, Albert Einstein College of Medicine; Director of Headache Center, Montefiore Medical Center
  • Dawn C. Buse, PhD, Director of Behavioral Medicine, Montefiore Headache Center; Assistant Professor, Department of Neurology, Albert Einstein College of Medicine; Assistant Professor, Clinical Health Psychology Doctoral Program, Ferkauf Graduate School of Psychology of Yeshiva University

The Rewrite Your Day campaign also offers an excellent website at www.RewriteYourDay.com. The site provides information about Chronic Migraine and headache specialists who can help with the diagnosis and management of the condition. Through the website, people can enter the contest by sharing their stores of the special moments they’ve missed due to Chronic Migraine and how they would “rewrite” those days if given the chance.

Chronic Migraine impacts an estimated 3.2 million Americans.1,2 Chronic Migraine is defined as having a diagnosis of migraine and experiencing headaches on 15 or more days per month with headache lasting four hours a day or longer.3,4,5 This means that people with Chronic Migraine have a headache or migraine at least half of every month, more often than not. The burden is compounded by a lack of knowledge and awareness about Chronic Migraine, the myths that still abound about it, and the stigma of the condition.

The Rewrite Your Day campaign has the potential to help us make great strides in overcoming the lack of understanding and the stigma through their website and the public attention that will come from the 15 people who get the opportunity to “rewrite” their day.

To learn more about The Rewrite Your Day campaign and to share your Chronic Migraine story, visit www.RewriteYourDay.com. I hope you’ll share your story. All of the shared stories, not just those of the 15 winners, will help people understand Chronic Migraine better.

1 Natoli JL, et al. Global Prevalence of Chronic Migraine: A Systematic Review. Cephalalgia. 2010;30(5):599-609.

2 Population Projections, United States, 2004-2030, by state, age and sex, on CDC WONDER On-line Database, September 2005. U.S. population estimates: 18+ years of age (n=234,504,070).  Available at http://wonder.cdc.gov/population-projections.html. Last accessed May 26, 2011.

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

4 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.

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

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.

Live well,


 

Puz-only-btn


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

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© Teri Robert, 2011
Last updated September 26, 2011


Western N.Y. Migraine Support Group: Join Us Tuesday

My friend and colleague Nancy Harris Bonk has started a Migraine and headache disorder support group for western New York. Their second meeting is scheduled for this coming Tuesday, May 17, at 7 p.m. I'm pleased to be joining them by telephone to discuss improving patient / doctor communication.

If you live in the area, please consider joining us!

For more information, please visit the Western New York Migraine and Headache Disorder Support Group site.

Live well,


 

Puz-only-btn


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

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Page copy protected against web site content infringement by Copyscape

© Teri Robert, 2011
Last updated May 15, 2011