Migraine Truth, a New Blogger on the Scene

I've been a bit AWOL recently. Dealing with my own family and health issues. While I wasn't around, a new Migraine blogger has appeared on the scene. Arabella started a new blog she named Migraine Truth, she says "because I'm tired of misconceptions, misunderstandings and outright lies." Wow.

Arabella is taking on some of the sites and blogs many Migraine bloggers don't or won't. Why not? I can't speak for others, but I generally don't because I don't have time to deal with retaliation. I've seen what some of these people do when someone writes something about them, and it's something they don't like.

Great job, Arabella! I hope to see you around and blogging for a very, very long time.

Namaste,
Abi

New Migraine Guide at About - a Good Thing?

One of the first really great Migraine and headache web sites I found when I turned to the internet for information several years ago was About.com's About Headaches and Migraines. At that time, the "guide" on the site was Teri Robert. When she left the site in January of 2007, it was a sad time for me. I'd followed her work for several years by then; had read her stupendous book, "Living Well With Migraine Disease and Headaches;" had learned so much from her; and had come to count on her work for basic information and for new research explained in terms I could understand.

When I emailed her, she explained that she had left About for health reasons -- that she needed less stress and responsibility. Not too long after that, she started writing and providing support on the HealthCentral Network's MyMigraineConnection.com. There, a site producer covered some of the duties that had been Teri's responsibility at About, allowing her more time to write and provide support while other things were covered by the producer.

This evening, I discovered that someone has finally filled the job of guide on the About.com site. A good thing for all of us who can use all the information we can get. Right? Well . . . at this point, I'm not too sure. The first thing I noticed is that Dr. Foley, the new guide, seems to lump headaches and Migraines into the word "headaches." In his bio, he says, "I spend my days treating primarily people in pain. Headaches are very common and many of my patients come seeking relief."

A good thing? Time will tell.

Shalom,
Abi

Migraine Expressed in Words and Images

OK, I'm seldom at a loss for words, but I just saw a book that leaves me feeling inadequate to express my thoughts about it in words.

inspiring

dynamic

glorious

uplifting

enlightening

All of those words come to mind, yet none seem adequate for this book. Migraine Expressions, edited by Betsy Blondin, is the first book of its kind. Through the words and images submitted by Migraineurs, this book takes you into the world of Migraine sufferers. I am in awe of people who can express themselves in this fashion.

Please, please, please, go to www.MigraineExpressions.com and get a copy of this book! If you have Migraine disease, you will find yourself in its pages. If you don't, this book will help you understand the disease and its sufferers better.

For more details, please see the press release below.

Namaste,
Abi

NEW MIGRAINE ART AND LITERATURE BOOK FROM WORD METRO PRESS

Groundbreaking book depicts migraine in insightful visual and written art from migraineurs worldwide

San Diego, California, July 16, 2008 – Migraine Expressions: A Creative Journey through Life with Migraine illustrates in breathtaking art, poetry, essays and photography some of the ways tens of millions of people worldwide live, work, feel and love while trying to minimize attacks and manage symptoms of this often-debilitating disease. The courage and strength that takes is illuminated in this dramatic work from 124 writers and artists in many states and countries.

No other book expresses migraine in both words and art of people who suffer the symptoms and survive the disease; most books about migraine are from experts who define, explain, and offer advice on how to manage it. This book will complement existing information, be instrumental for people with migraine to share experiences and communicate feelings, and serve as a tool for furthering understanding among non-migraineurs.

Migraine is a neurobiological disease impacting more than 30 million people in the United States and similarly 12 to 15 percent of people in most countries of the world. It is a debilitating and little-understood disorder that is finally attracting the long-overdue attention it urgently needs in medical research and treatment arenas as well as in the general media. Celebrities, athletes and well-known professionals appear more and more often to share their stories or in news items of crippling migraine attacks. They represent many millions of others around the world.

Suzanne E. Simons, Executive Director of the National Headache Foundation, commented, “Congratulations! The images and the words are compelling. Migraineurs will relate to the visual images and poems. Those who don’t suffer may be better able to empathize after reading the book.”

The book includes a foreword by leading migraine educator, advocate and author, Teri Robert, Ph.D., who says, “Projects such as Migraine Expressions are rare, priceless, and sorely needed. They offer an intimate view of the impact of migraine disease. The works of art in this book are deeply personal and revealing. They are heart-wrenching and inspiring, filled with both terror and hope.”

And Richard B. Lipton, MD, Professor of Neurology and Director, Montefiore Headache Center, Albert Einstein College of Medicine, claims, "Migraine Expressions reveals a neurobiological disease from many highly personal perspectives as contributors transform their experiences into stunning verbal and visual art. The book will help people with migraine find their individual voices even as they recognize the universality of their shared experiences.”

Book details: Hardcover, 192 pages, full color, 8.5 by 11 inches, available from publisher at www.wordmetropress.com July 21, 2008, $34.95 retail. Editor is available for interviews, appearances and book signings.

# # #

Betsy Baxter Blondin is a longtime writer and editor, a nearly 40-year migraine survivor,

and this is the first book published by Word Metro Press.

Contact Betsy at 760.458.5576 or editor@wordmetro.com for further information or to request a review copy.

www.wordmetropress.com, www.migraineexpressions.com

Using the words "headache" and "Migraine" Interchangeably. Bad, Bad, Bad.

I find myself exceedingly sad today. Last week, I received an email from a PR firm representing one of our major headache and Migraine disease nonprofit organizations. The email asked me to share information from a recent survey done by the nonprofit organization.

My mood went up at first -- Yes! More good information to share. Then my mood plummeted as I continued. What? This MAJOR organization, whose members and staff should know better, used the term "headache" through their entire release. Then, they added a paragraph about Migraine at the end. No way could I promote the information from their survey. There was no way to tell how many of the survey participants were responding based on their headaches and how many were responding based on Migraines.

I responded to the PR firm email, expressing my concerns and saying I could not promote the survey and its results. The next day, I received an email from the director of the nonprofit. In part, it read...

...The (name of nonprofit removed) uses the terms interchangeably as often those who have migraine often don't use that specific term for their headache. Sick headache and stress headache are frequently used to describe migraine. Many migraineurs think that if they don't have nausea/vomiting and/or sensitivity to light/sound, they don't have migraine, when they actually do. These people may still take time to read the information the (name of nonprofit removed) provides when the more generic term of headache is used...

What? I can't believe this was said. This organization should be educating people, not feeding the lack of knowledge and understanding. Maybe they don't think it's worth the effort to teach people?

I looked back at the material that was sent to me. It could easily have been rewritten to be enlightening rather than pandering to unawareness. All it would have taken would have been to replace the word "headache" with the phrase "headache and Migraine." It would be nothing to start adding a paragraph to their releases that explains that people are mistaking Migraines for headaches.

It just seems to me that this director is talking in circles in the email to me. It seems that this person is saying it's better to pander to ignorance rather than promoting education and awareness.

I'm not going to name the organization. It's just not worth it to start a battle with a director who is so sure that their organization is right.

Allow me to close with the last sentence of the reply I sent to this director:

If we can't count on the leaders in the field to push for progress, on whom can we count?

Sadly,
Abi

Interesting Book Review Site

Living Well with Migraine Disease and Headaches: What Your Doctor Doesn't Tell You...That You Need to Know by Teri Robert

My review

rating: 5 of 5 stars
The most helpful migraine and headache book to date. Ms. Robert tells it like it is and provides more information than any doctor has time to provide. Based on solid science as well as personal experience -- both her own and that of case studies.



Offers not only information, but hope and inspiration.


View all my reviews.

Headache and Migraine Disease Blog Carnival for May

Diana Lee has posted May's Headaches and Migraine Disease Blog Carnival on Somebody Heal Me. This month -- Migraines & Exercise: How do you stay active?

Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us. Visit the link to this month's carnival for a collection of informative entries on how other Migraineurs fit exercise into their lives.

Visit this month's blog carnival!

Namaste,
Abi

Migraine - 2008 Migraine and Headache Poetry Contest Winners!

Each year, writer and patient advocate Teri Robert conducts the Putting Our Heads Together Poetry Contest to bring together people with AND without Migraine disease and headaches to share our thoughts and expressions. This contest is held in April, National Poetry Month.

I just read this year's winning poems and many of the other poems entered. Wow! The poems submitted to this contest get better and better every year. I'm glad I'm not one of the judges. There's just no way I could choose!

When you have a bit of time, go read the wonderful poetry! You won't be disappointed!

Spring. Love it? Hate it? Migraines love it!

What a horrendous couple of weeks! In so many ways, I love spring with it's cherry blossoms, birds returning, flowers blooming! But, spring also seems to bring me more Migraines than any other time of year with wildly fluctuating temperatures and weather fronts coming through. UGH!

Of course, the increase in Migraines is at least partly my own fault. Once warmer weather arrives, I tend to curl up on my porch swing and sit there late into the night. That means going to bed later, getting less sleep. So, add that to the mercurial weather, and I'm doomed.

I can't decide if I love or hate spring. The one thing I'm sure of? Migraines love it!

Namaste,
Abi

Migraine Poetry - Express Yourself and Raise Awareness

Author and Patient Advocate Teri Robert knows the pain migraine sufferers face each day – she’s been experiencing headaches and migraine attacks herself since childhood. Finding writing therapeutic and wanting to further help those in the migraine community, Robert, in conjunction with The HealthCentral Network (www.HealthCentral.com), are hosting the “Putting Our Heads Together” Poetry Contest 2008.

Now in its seventh year, the contest encourages sufferers to find creative ways to express their pain. “Putting Our Heads Together” is free and will be published on HealthCentral’s MyMigraineConnection.com and Roberts’ HelpForHeadaches.com.

Entries will be judged by MAGNUM, the National Migraine Association (www.migraines.org) and will be collected until April 21. Winners will be announced on April 30, in recognition of National Poetry Month. “This contest started in 2001, and the work submitted has been amazing. Writing can be very therapeutic, as can reading what others have written,” said Robert, who currently educates and supports patients as Lead Expert for the MyMigraineConnection.com community. “Migraine disease and headaches can impact our lives more than many people could ever imagine.” “People coping with migraine disease continue to reach out to one another, forming incredibly supportive communities online,” said Chris Schroeder, CEO and President of The HealthCentral Network. “It’s an honor to provide the forum where users can creatively tell their stories and inspire others.”

Migraine disease affects nearly 36 million people in the United States alone, and at least 80% of the world's population will be affected by tension-type headaches at some time in their lives. Headache disorders cause more than 1 percent of all disability and 9 percent of all lost labor in the U.S. every year.

More information and the online entry instructions can be found on MyMigraineConnection at www.healthcentral.com/migraine/poetry-contest.html.

Why not join in the fun and enter? The deadline for entries is Monday, April 21.

Shalom,
Abi

April Headache Blog Carnival - Strategies for Coping with Migraines

Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us.

Visit this month's carnival for a collection of informative entries on basic strategies for coping with migraines and headaches.

Migraine Research - Please email your Senator TODAY!

We need and deserve better treatments, but we're unlikely to get them until the NIH increases the funding for basic Migraine and headache research.

Each of us CAN make a difference. Please read the letter below and follow the link to email your Senators NOW.

Thanks!

Shalom,
Abi

Please Email Your Senator Today! Our efforts last month to urge members of the US House of Representatives to support increases in NIH funding for research on headache disorders were highly successful. Twelve Representatives signed the Obey/Walsh letter. This is an outstanding result for the first mobilization of our numbers, and we are optimistic that it will be enough to have our message appended to the House appropriations bill. It is now time to contact your US Senators for the same purpose. Unfortunately our window of opportunity is only narrowly open. The letter with Senators' signatures must be submitted by today, April 4th. Please take just 5 minutes RIGHT NOW to go directly to http://capwiz.com/headacheadvocacy/issues/alert/?alertid=11231066&PROCESS=Take+Action and send your message to your two US Senators Please forward this email right away to anyone else concerned about the inadequate state of care for patients with headache disorders. Only with increased research will new effective treatments for headache disorders become available. And only with your help will such research activities increase to levels appropriate to the huge scale of this problem. The larger our voice, the greater will be our impact. Thanks again for your efforts. Robert Shapiro, MD, PhD William Young, MD, Teri Robert, PhD Brad Klein, MD, MBA

If you no longer wish to receive e-mail from us, you can unsubscribe here.

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Migraine Treatments: Time to get off our behinds!

Here's a sad fact for you -- There are NO medications available that were developed for Migraine prevention. NONE. Everything we have in our arsenal was developed for other conditions. Then Migraineurs using them for those conditions noticed that they were having fewer Migraines. All the preventive medications we have are what Teri Robert calls "hand-me-down" drugs.

How about another sad fact? Two days ago, the Alliance for Headache Disorders Advocacy posted an alert to their web site asking Migraineurs and other headache disorder patients, their friends, family, coworkers, etc., to email their members of the House about increased NIH funding for Migraine and headache research. The set up they have makes it quick and simple to send that email. It takes less than five minutes. I just emailed Teri, and was shocked by how few people have responded to that alert.

I read several Migraine forums, and am always saddened by the number of people who are desperately searching for effective preventive treatment. Lives are being disrupted and destroyed by this disease.

So, here's my question for those of you who are in that position or care about someone who is -- IF YOU HAVEN'T GONE TO THE AHDA SITE AND SENT THAT EMAIL, WHY NOT?

This is something we can DO that can make things better for us. It only takes a few minutes. You don't have to look up your representative. That's done for us. Even the introduction and closing of the email are done for us. We don't have to leave our homes or even pay for a postage stamp.

Here's my take on this situation. If you don't take a few minutes to go to the AHDA site and email your representative, they you no longer have the right to complain about the lack of available treatments. We can't just sit back and count on other people doing this for us.

It's one email. It's five minutes out of our day. It's time to get off our behinds and DO something!

From a blog entry on MyMigraine Connection:

PLEASE, go to www.AllianceForHeadacheAdvocacy.org NOW. Click the "What YOU Can Do" link in the left column. You will go to our Alert Center. There is a box with our Featured Alert. Simply click the red "Take Action" button in the Featured Alert box. That will take you to a letter that's ready for you to add what you want to say about this issue, fill in your name and address, and have your email sent directly to your Representative. It is urgent that you do this NOW because the House is setting 2009 funding appropriations in just a few days.

Please go to MyMigraineConnection, read that blog entry, and take action!

To read the rest of that blog entry, please click here.

Namaste,
Abi

March Blog Carnival - Maintaining Friendships for Those WIth Migraines and Headaches

Diana Lee at Somebody Heal Me has done us all a great service by establishing a monthly headache and Migraine disease blog carnival. This month, it's being hosted by Teri Robert at MyMigraineConnection.


Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and Migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us.

Take a look at the March Blog Carnival - Maintaining Friendships for Those With Migraines and Headaches.

The NY Times Migraine Blog... What the ****?

Last month, the NY Times started a new blog in their Opinion section, "Migraine, Perspectives on a Headache."

The blogging world seems to have gone wild talking about this blog, linking to it, praising it. What the hell? Yes, it's wonderful to have more attention paid to Migraine. This blog MAY help raise awareness. Still, I have some issues with it and the response to it:

• The subtitle, "Perspectives on a Headache," is just plain wrong. Migraines aren't headaches, people! Yes, it's that simple. They're NOT headaches. As I've seen Teri Robert say, "Migraines are a flare-up of Migraine, a genetic neurological disease. The headache, if there is one, is but on SYMPTOM of a Migraine attack. You can have a Migraine attack without having a headache."

• In "About This Blog," they say, "More than 28 million Americans..." Well, hell! If you're going to start a new blog, why not start out with current statistics. That 28 million figure is at least seven or eight years old, maybe older. Based on WHO prevalence statistics and current US Census data, the correct figure is more than 35 million Americans.

• Why call it "Migraine" when one of the primary writers, Paula Kamen, doesn't have Migraine disease? She has chronic daily headache. CHD is horrible, but it's not Migraine disease.

• If this blog is supposed to really address Migraine, there are at least two people missing from the writers on this blog -- Michael John Coleman of MAGNUM and Teri Robert.

• In all the rush to pay attention to the supposedly all-important NY Times, people are missing out on a great deal of blog entries and articles that are just as good, if not better.

Come on, people! Let's put things in perspective. The new kid on the block shouldn't eclipse all the other players. The NY Times blog is no longer new. Let's get back to business!