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Must-See Motherly Advice

This has nothing whatsoever to do with Migraines. It's just for fun. I saw this on the Today Show this morning, and I laughed so hard! You have to take a look at this. Enjoy!

Visit msnbc.com for breaking news, world news, and news about the economy

 

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© Teri Robert, 2011
Last updated December 27, 2011


Merry Christmas, a Flash Mob, and Migraines

Poinsettia75Good morning, everyone! Are you ready for Christmas? I'm as ready as I'm going to get.

Looking around on YouTube, I came across a video of a Christmas flash mob in a mall food court that's unique and wonderful. I want to share it with you...

I hope the video brought a smile to  your face. I wish you a joyous Christmas free of Migraines and full of happiness.

Live well,


 

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© Teri Robert, 2011
Last updated December 24, 2011


Patrice Rewrites Her Day Lost to Chronic Migraine

RewriteYourDayButtonGreetings to you, my readers and Migraine family! Today, I’d love to start with a drum roll, but it needs to be a quiet one for all of us with Migraine and Chronic Migraine who can’t stand loud noises. Why start with a drum roll? Because I have an exciting announcement to make, so keep reading!

For the last couple of months, I’ve been telling you about the Rewrite Your Day campaign, a campaign intended to raise awareness about Chronic Migraine and its heavy burden. The Rewrite Your Day campaign invites people with Chronic Migraine to share their stories about important days and events that have been stolen away from them by Chronic Migraine.

Celebrity event planner Mindy Weiss and a panel of five advocates (and yes, I get to be one of them!) are selecting 15 people who share their stories to recreate a special moment or day in their lives. The selection process has been so difficult – in a very good way! The entries are so engaging, so… well, it’s hard to find the words to describe them. As I read them, many of them take me back to the days when my own Migraines were chronic, bringing tears to my eyes at times. I can identify with those stories, and my heart goes out to the people sharing them.

Today, I get to tell you who our first Rewrite Your Day contest winner is and share her story with you. Congratulations to Patrice Johnson!

Patrice125Patrice is from Prairieville, Louisiana (near Baton Rouge and New Orleans). She is 31-years-old and is an executive assistant and former member of the Louisiana National Guard. Here’s Patrice’s story that she shared and her description of her re-creation:

 “I’ve lived with Chronic Migraine for more than 15 years with frequent headaches that can last 15 or more days a month and are often accompanied by nausea, sweating and loss of my peripheral vision.   My Chronic Migraine has impacted so many days of my life, but none more important than my wedding day in January 2009. 

I love to plan special events for my friends and family, as well as for the non-profit and community youth groups I support in my area.  So, when it came to my wedding, I spent months perfecting every detail, including personally designing the centerpieces, selecting the colors and flavor of the cake, and spending hours writing my own vows to recite to my future husband.  The one thing that was out of my hands was the migraine I woke up with on my wedding day, which only worsened throughout the morning and left me in terrible pain.  At the ceremony, the lights from the cameras flashing made it almost impossible to get down the aisle, and I rushed through my vows since the migraine made it difficult to read.  I did my best to greet my guests and enjoy the reception, but I could barely pose for photos or eat the delicious food prepared by our cousin.  During our first dance, I could only put my head on my husband’s shoulder and sway from side to side; he knew I wasn’t able to move much more than that due to the debilitating headache and dizziness.  I wish so much that we could have graced the dance floor the way we had envisioned, but Chronic Migraine doesn’t care that it’s your wedding day. 

Now that I am seeing a headache specialist, my migraines are more manageable.  I am sharing my story to let other people like me know that they are not alone, and encourage them to see a specialist who can help diagnose and manage their Chronic Migraine.”

Patrice’s re-creation:

“I am so excited to work with Mindy Weiss, who has planned so many celebrity weddings, to renew my vows and make new, positive memories of my wedding with my husband.  I can’t wait to read those vows with the emotion I had intended to convey on our wedding day and have my loved ones there to watch.  I know Mindy will make me feel like the princess that I had always wanted to be, and I will finally have a wedding memory that doesn’t include Chronic Migraine.”

Let me describe a few of the stories I’ve read in the last few days:

  • One woman described having Migraines since the sixth grade and being to many doctors. She’s a wife and mother of three boys, living with a Migraine or headache every day. She relates how difficult it is when her children want to do things with her, but she constantly has to tell them, “No,” because even pushing one of them on a swing hurts.
  • Another woman has survived cancer, but Chronic Migraine kept her from going to Cancer Survivor’s Day with her husband and children. She survived cancer, but Chronic Migraine steals days of her life from her.
  • A husband wrote about his Chronic Migraine ruining his wedding day. He wrote not about what that took away from him, but what it took away from his bride.

Those are just a few examples. The stories talk about missed weddings, anniversaries, graduation celebrations, Christmases, Father’s Days, and so much more. They also talk about how Chronic Migraine robs them of more than just special days and events – how Chronic Migraine robs them of the everyday joys, of being present in the lives of their families. Imagine being a parent sitting on the sidelines while your children’s childhoods pass by.

I’m really excited about Rewrite Your Day. You can find stories similar to those being shared in Rewrite Your Day in the online Migraine community, but Rewrite Your Day is pointing a spotlight on the devastation of Chronic Migraine. It’s bringing these stores to the public. This kind of awareness has been needed for a very long time.

If you have Chronic Migraine, please consider sharing your story. Entries will be accepted through December 30, 2011. Doing so not only enters you into the contest, it also enriches the collection of real-life experiences that will be available for the public to read. These stories will give the general public a look at the lives of people with Chronic Migraine as only the stories of real people can. These stories will also help other Migraineurs see that they’re not alone and encourage those who think they have Chronic Migraine to seek care from a doctor who specializes in the diagnosis and management of the condition. On top of that, they’ll help build awareness about Chronic Migraine and reduce the stigma associated with Migraine and Chronic Migraine. All the statistics and facts in the world can’t have as much impact as real stories told by real people.

If you’re concerned about entering the contest because your Chronic Migraine might keep you from being able to participate if you were to win, 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, add 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.

If you suspect that you have Chronic Migraine, or if you know someone who does, please visit the Rewrite Your Day website at www.RewriteYourDay.com for:

  • the contest information and entry form,
  • information about Chronic Migraine, and
  • help finding a doctor who specializes in the diagnosis and management of the condition.

It’s a sad truth that entirely too many people are losing chunks of their lives to Chronic Migraine – Experiencing Migraines with headaches 15 or more days per month with the headache lasting four hours or longer a day.1,2,3 People who live with Chronic Migraine have a Migraine or headache more often than not, an untenable situation that can be devastating.

We’ve waited a very long time for a way to show people what Migraine and Chronic Migraine can do to our lives. Let’s do all we can to make the Rewrite Your Day campaign as effective as possible. Share your story. Tell others about the contest and the site. Email a link to www.RewriteYourDay.com to everyone you know. Tweet about it; post a link on Facebook. If you blog, blog about it. Let’s make our voices heard!

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 December 19, 2011


A Holiday Gift for My Migraine and Headache Family

GoldPackageWith all my holiday shopping for family completed, my thoughts turned to a gift for my extended Migraine and headache family.

With so many of you scattered across the United States and in other countries, sending each of you a personal gift just isn't possible, but I wanted to do something beyond words to show you that I'm thinking of you during this holiday season.

Finally, I decided to do what I did last year, make a donation to a nonprofit organization, a donation that would do something for all of us. Well, that's easier said than done because there are several organizations working hard to improve conditions for all of us living with Migraine disease and other headache disorders.

With the decision made that a donation was the way to go, the next decision was... Which organization. That one was just too tough for me. So, I made donations to (in alphabetical order):

 

AHDALogo200The Alliance for Headache Disorders Advocacy (AHDA)


AMF200The American Migraine Foundation


ClusterBusters200Clusterbusters


MFRLogo200pxThe Migraine Research Foundation


NHF200The National Headache Foundation


OUCH200The Organization for Understanding Cluster Headaches (OUCH)

If you still have holiday gifts to select, please consider making a donation in someone's name as a gift to them. I can tell you it's a gift I'd appreciate, and I have no doubt that many people with Migraine and other headache disorders would appreciate this type of gift too.

My most profound holiday wish for each and every one of you is that the new year bring you better treatments, more understanding from those around you, good health, and improved quality of life. I can wish that all I want, but as Carl Sandburg said, "Wishes won't wash dishes." So, I've made these donations as my holiday gift to you, hoping that their work helps that wish come true.

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 19, 2011


Migraine Pearls or Onions, 12/18/11

PearlsOrOnions125 There's a great deal of information about Migraine online, but not all of it is accurate and unbiased. 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, I'm going to start with the Migraine Onion, saving the best, the Pearl, for last...

Onion100 Today's Migraine Onion goes to the blog Articles about Morf Racing for their entry Migraine Cure - Finally, a Recent Presription drug Offers Promise. Articles About Morf Racing? Seriously? I'm not even sure what morf facing is, so I did a search. On one site, I found it described thusly:

"MORF racing is an off-road triathlon team based out of Boulder, Colorado... We  mainly race off-road triathlons, including Xterra races, but we also race Cyclocross, Mountain Bikes, showshoe races, road tris, trail runs, and anything else that sounds like fun."

So, I guess it should come as no surprise that this blog entry about a "Migraine Cure" is inaccurate AND based on old information. They're writing about Telcagepant, and say...

"It is noted that this medication should help or simply render migraine cure for countless people suffering from critical migraine disorders."

No, Telcagepant was not being developed as a Migraine "cure." Migraine is a genetic neurological disease for which, at this time there are no cures on the market OR in development. Telcagepant was originally in clinical trials as a Migraine abortive medication. There was some research into it as a preventive medication as well.

The blog also says...

"However, if approved, Telkagepant will end up being the first medicine for migraine that could cure migraine simply by blocking the receptors of peptides encoded by the calcitonin gene (CGRP)... Even further study is actually desired to verify whether it is risk-free to use telcagepant on people with cardiovascular malady. Other research is also neccessary to consider the long-term efficiency and safety of this particular migraine cure. Let’s cross our fingers and hope that the true migraine cure has finally appeared."

Let me make it clear that this blog was posted on December 15, 2011 to back up my point about it being based on outdated information. Yes, Merck had conducted many clinical trials of Telcagepant, and they had gone so far as to apply to the FDA for approval of Telcagepant for the treatment of Migraine. BUT on July 29, 2011, nearly five months ago, they withdrew their FDA application and permanently discontinued development of Telcagepant. Even though the person who wrote the blog entry had included clinical trial data, he or she obviously didn't complete their research before writing.

I suggest that whoever writes for Articles About Morf Racing stick to topics within their area of expertise. I've asked this before, but I'll ask it again - Why do people insist on writing on topics outside their area of expertise, areas that already have expert writers providing quality information online?

And, todPearl100ay's Migraine Pearl. Today's Pearl goes to Migraineur and blogger Kerrie Smyres of The Daily Headache and Migraine.com.

Kerrie has been living with Migraines since she was 11-years-old and started blogging on The Daily Headache in 2005. Kerrie has really been through the wringer with her chronic Migraines and headaches. For some time, she was even unable to blog because doing anything on the computer made her Migraines worse.

It's truly great to see Kerrie blogging again. She's insightful, witty, and always well informed. Welcome back, Kerrie!

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

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 18, 2011


Migraine Gem of the Day - Holiday Tips from Marcia Cross

MigGem166Desperate Housewives star Marcia Cross knows personally how debilitating Migraines can be. When I talked with her a few years ago, it was close to the winter holidays, so trying to avoid holiday Migraines was a major topic of discusssion.

One tip she offered was:

"Make party planning stress-free: Stress can make you more susceptible to your migraine triggers. Planning a dinner party for friends and family? Plan ahead and shop early. Enlist helpers and delegate duties to make last-minute details stress free as possible."

You can read more tips from Marcia and about her Migraines in Navigating Holiday Parties with Migraines - Five Tips from Marcia Cross.

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 17, 2011.


Holiday Gifts for People with Migraines

Are you looking for gifts for people with Migraines? In my Café Press Migraine Awareness Gift Shop, you can find some gifts that are perfect for Migraineurs. The mark-up on these items is low, and all proceeds from the shop are donated to Migraine research.

Here are a few of the items you can find there:

MigraineBossTea150 "Migraine is not the boss of" me tea tumbler:

The Thermos tea tumbler is a cool way to keep your tea hot. The built-in infuser lets you brew-on-the-go, allowing you to spend less time in the kitchen and more time enjoying your tea. This is a must have for all tea lovers. This durable thermos has vacuum insulation, which keeps your tea hot but your hands cool. Drop some ice cubes in for an instant iced tea and a condensation-free experience.

 

MigraineBoss-iPadSleeve150

"Migraines are not the boss of me!" iPad sleeve:

This stylish iPad and iPad 2 case has double-backed neoprene on the outside and inside. It lets you express your individuality while also protecting your device. The personalized iPad sleeve cover is one seriously cool iPad 2 sleeve for show what you love.

 

 

TakeChargeHoodedSweatshirt200

"Take Charge" hooded sweatshirt:

Says, "The person with the most at stake gets to be in charge. Take charge of your health care!"

Stay warm with our Hanes Ultimate Cotton Pullover Hood. Constructed with a heavyweight 90/10 cotton/polyester blend. Thick (but not bulky), comfortable, durable and guaranteed

  • 10.1 oz. patented PrintPro® fabric in a 90/10 cotton/polyester blend
  • Standard fit
  • Spandex trim in cuffs and waistband

 

  MigraineDiseaseCapSleeveTee200

"Migraine: a DISEASE..." cap sleeve t-shirt:

Body-hugging close contoured fit. Size up for a looser fit.
Fabric Thickness:
Get into sporty, stylin' casual comfort with our Women's Cap Sleeve Raglan. Looks great on the go or just hangin' out. Made of 100% combed ring-spun cotton that gets even softer with each washing.

  • 6.1 oz 100% combed ring-spun cotton 1x1 rib
  • Shaped fit, side seamed
  • Contrast color cap sleeves and single-needle bound collar

 

FireHisSorryButtMousepad175

"Fire his sorry butt!" mousepad:

A mousepad with an attitude!

Keep your mouse rolling in style on our durable cloth top mousepad. A great gift for geeks, gamers, or anyone with a computer. Rubber backing prevents the mousepad from sliding. Machine washable.

 

KnowledgeIsPower175

"Knowledge Is Power" keepsake box:

Perfect for stylishly storing jewelry and mementos, this hardwood box showcases a ceramic tile. Spring-loaded hinged lid stays open without tipping the box over and snaps closed securely.

  • Made of solid hardwood with high-gloss lacquer finish
  • Interior is fully lined in velvet; bottom is covered with felt
  • Measures 5.5" x 5.5" x 2.25" with a 4.25" x 4.25" ceramic tile

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 15, 2011


Satisfied with Available Migraine Treatment?

Are you satisfied with the Migraine treatments that are currently available? Do you think doctors; the general public; your family, friends, and employers understand Migraine? Have the myths and misconceptions about Migraine and the stigma that comes with having Migraine disease gone away?

No?

MimeSignPetition
For more information about the AHDA petition to Congress, see Better Migraine Treatment, More Awareness - Take Just 2 Minutes.

If we don't speak up for ourselves, we can't expect others to stand up for us. Don't sit back and think that other people will sign the petition so you don't need to. This is not JUST another online petition. It is set up through a company specializing in delivering messages to Congress AND advocates from the Alliance for Headache Disorders Advocacy will PERSONALLY be delivering the petition to members of Congress during Headache on the Hill in March, 2012. If Migraineurs, their families, their friends, and others who are concerned don't sign this petiton AHDA advocates cannot succeed. Honestly, if you don't sign this petition and help with efforts to improve the state of Migraine research and treatment, you forfeit the right to complain about it.

Please sign the petition!

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 13, 2011