Migraine Awareness Month Blogging Challenge #3: Just shoot me now!

AwarenessMonth2012BC2

Today's prompt for the National Migraine Awareness Month Blog Challenge is:

Migraine Awareness Month #3  What's your worst Migraine trigger? Can you avoid it? How do you handle it?

MSG, bright lights, perfume bottles dressed as people, weather fronts and air pressure changes, a sleepless night, hormones… all are big problems for me.  These triggers are often difficult to control or predict and for people like me, they are potent triggers.

My worst trigger is actually different.  It’s different because it is almost entirely beyond my control.  My biggest, worst trigger is… my comorbid conditions. 

I’ve written at Migraine.com before about autoimmune thyroid dysfunction (Graves’ disease), lupus and Sjogren’s syndrome.  I’ve told readers there about little known conditions called dystonia and tardive reactions.  I’ve written elsewhere about laryngopharyngeal reflux (LPR) as well as systemic inflammation, facial neuralgias and even about spinal problems.  Together these are my Achilles’ heel.

I’ve long ago learned how to manage most of my food triggers – I shop, cook and eat as though I lived 200 years ago.  CHECK.

I quit my jobs and remodeled my home to avoid lighting and sleep triggers.  CHECK.

I try not to go out into the public very often unless I have a way home so if noise and smell triggers set me off I can quickly get away from them. CHECK.

My hubs follows the weather very carefully and warns me when fronts are coming through that might trigger problems for me.  I try to make all my flights non-stop or I drive (at night and early morning) to avoid those pressure triggers.  CHECK.

I had a hysterectomy and quit all HRT and the hormones that became (for me) such a huge trigger for Migraine with aura.  CHECK.

All those CHECKs came with a hefty price, in more ways than financially.

So I have gone to great extremes and I’ve managed to do just about everything right and still, I remain a chronic Migraineur.

No matter how hard I try, no matter the giant mountains I have climbed to reduce my triggers, I cannot control my worst trigger: my other health issues.

Most of my comorbid conditions involve inflammation and my central nervous system in one way or another.  They are highly reactive to outside stressors (like triggers) such as illness, injury, medications or yes… stress itself.  These "triggers" cause disease flares where my immune system begans to attack my own body.  I have organ and musculoskeletal damage from them, so I MUST avoid flu and colds, dehydration, all sunlight, certain food and medicines, cold temperatures, wind… and negative emotions. 

Not only do my comorbid conditions complicate my life, but also my Migraine treatment.  As a result, when I do have a Migraine that runs amok, I have precious few options to pull me through.

  • No triptans
  • No DHE
  • No traditional anti-emetics
  • No drugs that cause tardive reactions (an enormous list)
  • No additional NSAIDs

My treatment for these comorbid conditions limits the medicines I can take while undergoing treatment.  These include the entire class of opiate pain relievers.

In avoiding all my Migraine and health triggers, my life has become pretty limited.  I had to come to terms with all my different diagnoses as well as my *new* life with them.  My “old life” and dreams were gone in one long, agonizing puff of smoke.  I went through several stages of anger and grief before I realized that I have done everything I can do to be better.  The rest, for right now, just has to wait. 

Life however, doesn’t.

While we wait for brilliant researchers to find us new treatments, I can still be a person that has value.  I do still have choices.

When I am able, I can contribute to my home community (I am a CERT trainer and medical First Responder), my Migraine community (I am an educator and advocate) and communities for those pesky comorbid conditions.  I can help others and see them smile.  I am still a wife, a mom, a daughter, a friend - - and a member of the human race.

I live every day of my life now with pain because of those things over which I have no control.  My Migraines are the worst, and all roads lead to them.  If I was given a choice of a cure for any of the significant health problems I have, it would be Migraine I would wish away. 

To learn more about these health conditions, check out these helpful links:

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!

Have a great day!
Ellen


Migraine Awareness Month #2: Tea For Two

AwarenessMonth2012BC2Today's prompt for the National Migraine Awareness Month Blog Challenge is:

Migraine Awareness Month #2: Tea for Two
If you could invite someone (any living person) to your home for tea for the purpose of explaining Migraine disease to them so they would truly understand it, who would it be and why?

Oh, my! This is tough because I can think of so many people I'd like to invite. OK, narrowing it down...

I'd invite Dr. Mehmet Oz. He's the person I'd invite because he's so visible and influential, and his knowledge of Migraine needs updating. Doctors and researchers in the field of Migraine have now moved on from the vascular theory of Migraine, realizing that it's not vasodilation (widening of blood vessels) that causes Migraine pain to realizing that it's actually tied to cortical spreading depression (CSD). CSD is a wave of unusual electrical activity that sweeps across the brain after we encounter a trigger. Dr. Oz is still telling people that the pain of Migraine is caused by a "process of spasming, the opening and closing of blood vessels..." You can hear him say it for yourself in a video on his web site.

Between his own television show, his guest appearances on other shows and other media exposure, Dr. Oz reaches countless people, and he's giving them the wrong information about Migraine.

Yes, he's definitely the person I'd invite to tea.

Live well,

PurpleRibbonTiny
 

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© Teri Robert, 2012
Last updated June 2, 2012.


Migraine Awareness Month #1: My First for the First

AwarenessMonth2012BC2Today is the first day of National Migraine Awareness Month and the first day of the National Migraine Awareness Month Blog Challenge. The challenge prompt for today is:

Migraine Awareness Month #1: Your First for the First
Share the story of your first Migraine, what it was like, what you did, how you felt.

I wrote this one for the ACHE blog, so rather than write it twice, please allow me to direct you to it on the ACHE blog.

Live well,

PurpleRibbonTiny
 

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© Teri Robert, 2012
Last updated June 1, 2012.


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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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, 2012
Last updated March 22, 2012.


Migraine Congressional Hearing - Answers to Your Questions

WhySign

For a while now, I've been asking you to sign the Alliance for Headache Disorders Advocacy's petition urging Congress to hold hearings on the impact of Migraine and other headache disorders.

The response has been... well, underwhelming at best. It occurs to me that perhaps I haven't done a very good job of explaining what a Congressional hearing could do for everyone with Migraine or another headache disorder and some other issues about the petition.

So, today, that's what I want to do - Explain some things about the petition, what it could accomplish, and why it's urgent that we get as many signatures on it as possible. To do that, I've reviewed some of the questions about the hearing and the petition and created a FAQ of sorts:

Question: "But Snopes.com and others say online petitions are bogus!"

Answer: Actually, Snopes doesn't say that. In reality, some online petitions are worthless, and some are scams.

This particular petition is legitimate and legal. In addition, it doesn't stop online. Advocates for the AHDA will be hand delivering it to members of Congress during our Headache on the Hill event on March 27, 2012.

Question: Why should we want Congress to hold a hearing about the impact of Migraine disease and other headache disorders?

Answer: Whether we look at the general public or at members of Congress specifically, Migraine and other headache disorders are still terribly misunderstood and surrounded by myths and stigma. At a hearing, patients, advocates, and health care professionals would have the opportunity to testify before a Congressional committee. These "witnesses" would share factual data such as statistics and share comments and stories that have been shared through the current AHDA petition. But more than that, some of these witnesses would be patients who would testify about what Migraine and other headache disorders have done to their lives and the lives of their families.

Question: What would a better understanding in Congress accomplish?

Answer: Short-term, a better understanding in Congress must be accomplished before we'll see any significant increase in federal funding for Migraine and headache research funding.

We depend on pharmaceutical companies to develop new medications. The problem with that when it comes to Migraine and headache medications is the difficulty with developing medications for diseases and conditions when scientists don't yet understand them well. Pharmaceutical companies develop medications. They don't do the kind of basic disease research that's yet to be done into the cause and pathophysiology of Migraine and other headache disorders.

Longer-term, increased research funding can lead to better treatments. At this time, there are no treatments on the market that were originally developed for the prevention of Migraine and headache. This must change.

Also, we would hope that a better understanding in Congress would help lead to a better understanding among federal agencies and the general public, including employers.

Question/Comment: "I'm busy and don't have time for this."

Answer: Everyone has time for this. It's a simple matter of following the link then entering your name, address, and email address. It can be done in one minute, literally.

Question: What's done with my personal information I enter when I sign the petition?

Answer: It goes into a database on a secure server. Only two officers of the AHDA have access to that information. Each Congressional office will receive a list of only the people in their districts who signed the petition. For Senators, of course, that will mean the whole state. For members of the house, that will mean only their own Congressional district.

We NEVER share or sell our data or our mailing list, not even with the organizations that are members of the AHDA. We may email you in the future when there's action to be taken, but that is the only email you will receive as a result of signing the petition. We take your privacy very seriously, as seriously as we take our own.

Question/Comment: But the country is already in a financial mess!

Answer: We realize that. At this point, we're asking for a Congressional hearing. Do we also want an increase in research funding? Certainly, we do, and we absolutely understand. But please hear me on this. At this point in time, when it comes to federal funding for medical research, there is no correlation between the amount of funding and disease burden. By disease burden, I don't just mean the number of people who have a disease or condition. I mean the total burden of it -- how many people it affects, how severely it impacts people, the economic cost of the disease, the social cost of the disease, and more.  In previous years, when we've gone to Congress asking for increased research funding, we've also talked to them about there needing to be a better correlation between funding and disease burden so that the federal funding for research is allocated in a manner that is most beneficial.

Question: Who can and should sign the petition. Do you have to have Migraines or headaches? Do you have to live in the U.S.?

Answer: We'd love to see as many signatures of U.S. citizens over the age of 18 as possible. No, you don't have to have Migraines or headaches. Yes, you do need to be a U.S. citizen. If you're not a U.S. citizen, you can still help by sharing the link with your family and friends in the U.S. and asking them to sign the petition.

I hope this post answers any questions you may have about this petition. This issue and petition are vitally important to so many people.

If you haven't signed the petition, please take just a minute to sign it now...

Sign the Petition.

If you've already signed it, please share the link with your family and friends and ask them to sign it. If you have a Facebook page, please share the petition or his blog post on your Facebook page. Tweet about it, please?

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, 2012
Last updated March 14, 2012.


Migraines or Not - Best Wishes for 2012!

2012MoonStarsWhether you have Migraines or headaches or not, I want to take this opportunity to wish you the very best in 2012.

2011 was a difficult year for many people I know. Well, it was a difficult year for many people, period. The first few days of 2012 have been very busy for me, but I don't want to get any farther into this new year without wishing you well.

I'm not going to spend a lot of time and space writing here about managing Migraine disease and headaches in the new year. I've already done that in two other places, so it makes far more sense to give you the links to those pieces than to do it all over again here. I took two different approaches to the new year and Migraine / headache management for 2012. I hope you find one of them helpful to you or someone you know...

Sometimes, we set ourselves up for disappointment by setting lofty goals for ourselves that just aren't very realistic given our situation. I've done that to myself, and I hate to see any of us do it. So, for the HealthCentral Migraine community, I wrote Realistic Migraine Management Goals for 2012. There's a slideshow that goes with the post, and I hope you'll find it both helpful and encouraging.

On MIgraine.com, I wrote about my personal favorite approach to Migraine management, the proactive approach, which means taking charge of my own health and my health care. Yes, I do know how difficult that is, and I realize that will make that piece less than popular with some people. But, I have to share that until I got angry enough about going to doctor after doctor and not getting any better, took charge, and traveled that horribly difficult eight hours each direction to see a specialist, I was stuck in bed five or six days a week with the Migraine from hell. I wanted better than that for myself, and I want it for you too. So, on Migraine.com, I wrote Migraines and My Promise for 2012.

As we head into 2012, I wish you the moon and the stars and all things bright and good!

Have you set goals, made resolutions, or made promises to yourself about your health for 2012? Post a comment to share them with me. I'd love to hear from you!

Live well,


 

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© Teri Robert, 2012
Last updated January 4, 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,


 

Puz-only-btn


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© Teri Robert, 2011
Last updated December 19, 2011