Ask Migraine Specialist Dr. Rob Cowan a Question

QuestionDr. Rob Cowan, a magnificent Migraine and headache specialist and director of the Stanford Headache Center is accepting questions about headache disorders through 5 p.m., Pacific time, tomorrow (Friday, March 8).

Selected questions will be answered on the Stanford Medical blog Scope.

Dr. Cowan is a perfect person to answer Migraine and headache questions. He's a wonderful specialist, has Migraines himself, is a published author on the topic, and is active in advocacy efforts on behalf of patients with Migraine and other headache disorders.

To ask Dr. Cowan a question, Tweet it with the hashtag #AskSUMed or post it in the comments section of this Scope blog entry - Ask Stanford Med: Director of Stanford Headache Clinic taking questions on headache disorders.

Live well,

PurpleRibbonTiny Teri1
 

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


PicBadges Migraine Ribbon Confusion

Awareness166As you may know, it was announced recently that Migraine and other headache disorders finally have an "official" awareness color - purple. (See Migraine and Headache Awareness Go Purple.) That means that purple can stand for any headache disorder...

  • Migraine with aura,
  • Migraine without aura,
  • basilar-type Migraine,
  • hemiplegic Migraine,
  • any other form of Migraine,
  • cluster headaches,
  • tension-type headaches,
  • chronic daily headache,
  • new daily persistent headache,
  • etc.

After the announcement of our color, one of the things I did on Facebook was set up a purple ribbon that people could add to their profile pictures via PicBadges. Check out our purple ribbon on PicBadges. It's a basic, plain, royal purple ribbon that can be used to raise awareness of any form of Migraine or any other headache disorder.

There is also a purple ribbon with a red stripe on PicBadges, set up by Cat Charrett-Dykes, that represents chronic Migraine. Cat has worked very hard on raising awareness of chronic Migraine, and it is important to her that people know the difference between the two ribbons.

So, for those of you who have been emailing me and asking, that's the difference between the two. The plain purple represents ALL Migraine and headache. The purple with the red stripe represents CHRONIC Migraine. To answer another question, yes, you can put more than one PicBadge on your Facebook profile picture. When you're on PicBadges and click to add the badge, just arrange them so they don't cover each other.

To answer one more question from my email - No, pediatric Migraine is not a specific form of Migraine. Children can have the same forms of Migraine that adults can have. I understand that there is now a PicBadge for "Pediatric Migraine," but that's referring to an age group, not a form of Migraine.

Live well,

PurpleRibbonTiny
 

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© Teri Robert, 2012
Last updated April 5, 2012.


Migraine and Headache Awareness Go Purple!

Migraine-AwarenessDuring the time I've been working as a patient educator and advocate in the area of Migraine and other headache disorders, one thing we've all been asking for is an awareness color. Breast cancer has pink; HIV/AIDS has red; and so on. But we've never had an "official color."

UNTIL NOW!

One of the problems is that there are several nonprofit organizations for Migraine and headache, some of them on pretty equal footing, so nobody could really make the decision. So, since I work with all of those organizations, I talked with representatives from them, and the good news is that we now have an "official" color. Looking at this post makes it pretty obvious that the color is purple. There were two primary reasons for going with purple:

  • In 2004, a group of Migraineurs did an awareness project selling purple silicone wristbands and donated the profits to MAGNUM.
  • Catherine Charrett-Dykes has been working on an awareness campaign on Facebook for CHRONIC Migraine, using a purple ribbon with a red stripe. 

AmethystCrystalCluster150Another reason I like purple for Migraine and headache is that in crystal healing, amethyst is the healing stone for Migraine and headache. 

Since the color has just been "made official," we don't yet have pins, bracelets, and the like available, but I'm sure they will be soon. Such items will make great fundraising projects to raise research $$ for Migraine, cluster headaches, and other headache disorders.

In the meantime, here are some places you can get information and start joining in to raise awareness:

  • Awareness web site: www.FightingHeadacheDisorders.com. This site is one to bookmark since it will be kept updated with links to purple items, awareness projects, and more information as it becomes available.
  • Add a purple ribbon to your profile picture on Facebook. This will work whether you've changed to the new timeline feature or not. To do this, go to PicBadges.
  • Also on Facebook, visit and like the Fighting Headache Disorders Facebook page.

Many thanks to the organizations who have endorsed purple as our awareness color. They are (in alphabetical order):

Also, many thanks to Ellen Schnakenberger, who helped get FightingHeadacheDisorders.com up and running and is helping with the Facebook page as well.

Now that we have our color, I hope you'll join me in wearing it often and using it wherever and whenever possible to show awareness and support. If you use it on your blog or web site, or have suggestions, please let me know!

Live well,


 

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© Teri Robert, 2012
Last updated March 22, 2012.


Living with Migraines - Thoughts on a Sunday

ThoughtsSunday

It seems to be a recent trend for a Migraine to be kicking my backside on Sundays. Maybe it's just that it's been a trend for the weather to be changing on Sundays lately, and my doctor and I are still waiting to see if the change we've made to my treatment regimen is going to be the right one to reduce my Migraine frequency. In any case, I hope your head is being kinder to you today than mine is to me.

Last week was a busy week with several opportunities to talk with other Migraineurs who are working hard to get their Migraines better managed and some who are entering into the advocacy arena, some in new and creative ways.

Kelly, who writes the blog Fly With Hope, has started a magnificent new project - Project Migraine Hope. Here's a snipped from her description of Project Migraine Hope:

"Project Migraine Hope is a community of videos where individuals who have Migraines (chronic or episodic) and loved ones/caregivers/friends of those who have Migraines of all ages and backgrounds share their stories with Migraine disease and share a message of hope for others going through what they are going through."

When you have a big of time, it would be well spent checking out the Project Migraine Hope web site.

Several other people with Migraines or cluster headaches were busy working to get more signatures on the Alliance for Headache Disorders Advocacy (AHDA) petition urging Congress to hold hearings on the impact of Migraine and other headache disorders. Many of these peole have Migraines or headaches that are frequent and severe enough that they're seldom able to leave their homes, but they want to be part of an advocacy effort to make things better for all of us. In the left column of this blog, you'll see a widget with a clock counting down to the deadline for signing the petition. if you haven't already signed it, you can click on that widget to sign it or CLICK HERE.

Someone with chronic Migraine also asked me about attending Headache on the Hill (HOH). HOH is an event organized by the AHDA. During this event, advocates meet in Washington, DC, to visit the offices of their Senators and members of the House to bring their attention to issues of vital importance to people with Migraine and other headache disorders. This year, HOH advocates will be taking the petition with them.

From Kelly to people attending HOH to people working to get more signatures on the AHDA petition, there's a common thread. All of these people know that one person CAN make a difference. That reminds me of one of my favorite YouTube videos, so I'll share it with you...

Live well,


 

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© Teri Robert, 2012
Last updated January 28, 2012.


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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© Teri Robert, 2011
Last updated December 19, 2011