To Tweet or Not to Tweet?

Went to Tweet some of my favorite Migraine links today, but Twitter has been "over capacity" for the last half hour. Now I understand that it's Sunday, and I understand that we don't pay for unsing Twitter, but it is monetized. So, what's the deal? This isn't an isolated incident. TIme for Twitter to invest in more server space or bandwidth or whatever it is they need to invest in to solve this problem.

Let's Get Off Our Tushies and Sign That Migraine Petition!

Long time, no blog, fellow Migraineurs!

Wanted to pop in to remind everyone that the Alliance for Headache Disorders Advocacy is busy at work trying to get Congress to hold the very first Congressional hearings about Migraine disease and other headache disorders.

As with their other initiatives, it only takes a very short time to sign this petition, and it's super easy. You just follow the link and add your first name, last name, email address, and zip code, and voila! You're done!

Now this is kind of like Presidential elections. If you don't vote, you loose the right to complain!

So, get off your tushies and sign the petition, for cyrin' out loud! 

Sign the AHDA petition! 

Namasté,
Abi ♥

Migraine and Disability, the Best Post I've Seen!

Kudos to Migraine specialist and AHDA advocate Bill Young who wrote the best blog post I've ever seen on the topic of Migraine and disability. Here's the first paragraph:

"In order to bring new treatments to people with severe migraine we have to be able to measure the disability and impact of migraine. I am a physician who cares for and about people with severe headaches, but I have encountered a problem communicating with other doctors, scientists, and with my patients about how their headaches impact their lives. In order to determine this, I ask questions such as, “What effect does migraine have on your life?” or, “How do your headaches make your life different than it otherwise would be?”. The answers I get, often accompanied by tears, vary from the people who insist on focusing on the smallest effect–what one headache feels like–to those who give me a real feel for the big picture."

You have to take the time to read the rest of this blog post, Disability, Impact and Migraine.

Thank you, Dr. Young, for all your hard work on our behalf.

Namasté
Abi

Migraines are Curable? Oh, Puhleeeeeze!

Well, Arabella of the blog Migraine Truth has found an other real gem. I'm not going to write anything about this blog post she found. She has spoken quite well enough for me.

Please, go read Migraines are Curable - Here We Go Again!

Great job, Arabella. Thank you!

Namasté,
Abi

Teri Robert and Ali Sultaneh: What's Going On?

If you've read this blog before, you know that I admire Teri Robert a great deal. Teri is the author of Living Well With Migraine Disease and Headaches, a health writer, and a patient advocate in the field of Migraine and other headache disorders. If I were younger, I'd hope to grow up to be like Teri. As it is, I hope my daughter grows up to be like Teri. I could go on about why I admire her, but if you know anything of her work, I don't need to tell you more.

For several weeks now, I've been seeing some disturbing posts on a Migraine forum that I sometimes read. To tell you about those posts, I need to give you some background on someone who is a frequent poster on that forum.

Ali Sultaneh is a doctor in Syria who has been claiming for several years now to have invented a surgery that can "cure" Migraines. In the last couple of years, other surgeons have developed treatments that Sultaneh says are "stolen" from his surgery. Sultaneh persists in posting diatribes about this supposed theft to online forums that exist for Migraine patients to share information and support, which is fruitless as patients can't do anything about his problems. On one of these forums, Teri has repeatedly suggested to him that he contact a lawyer or that he contact an investigative reporter at a large newspaper. If his surgery is anywhere near as successful as he says it is. the theft of said surgery would be a HUGE story, one that a good reporter would love to sink his or her teeth into. I've seen Teri make this suggestion to him at least twice, but have never seen him reply to that suggestion.

Just one more piece of background, then I promise to get to the point. Dr. Sultaneh has attempted to post about his surgery to the forum on About.com (when Teri worked for them) and MyMigraineConnection.com (Teri currently works for them.) On both of those sites, it's a violation of their terms of service for anyone to post to promote goods and services. It's considered spamming. So, when she doesn't allow him to post, she's doing her job. I asked her about this via email. Here's what she told me:

"I have not allowed him to post for two reasons:

1. On About.com, MyMigraineConnection.com, and HelpForHeadaches.com, it's against the terms of service to post to promote goods and services. In plain old Internet lingo, it's spamming, and neither the companies nor I tolerate spamming.


2. There is no cure for Migraine disease yet. It's that simple. There are treatments that are very effective for preventing Migraines, but nothing that can actually cure the disease. Thus, I allow no one to post that they have the cure because they don't."

OK. Here's what's going on now:

For some reason known only to Sultaneh, he has decided to attack Teri, saying that she's a "killer" because she hasn't allowed him to post about his surgery on sites that she manages. He glommed onto an article Teri wrote about a young woman who took her life after being treated like a drug seeker when she went to the ER for help with an out-of-control Migraine. Now, he's claiming that Teri is responsible for her suicide because she didn't allow him to post about his surgery.

Yesterday, he also posted on a forum (not one of Teri's) that Teri had emailed him and invited him to post on her sites, but that he supposedly deleted the invitation. Teri says she did not email him and would never invite him to post to her sites. I believe her, and that makes Sultaneh a liar on top of everything else. Another Migraine blogger has written about this and makes a similar observation in the comments on his recent post, Ali Sultaneh and His "Stolen" Surgery.

Sultaneh has attempted to post comments here, on my blog, several times to talk about his surgery. I too consider his comments to be spam and have deleted them all.

I wanted to write this so that anybody who is coming across these ludicrous accusations about Teri could know at least a bit about what's going on. I don't understand what Sultaneh thinks he can accomplish by attacking her. Even if what he says about his surgery is true, there's nothing Teri can do about it. Even if it wasn't against the rules, and she had let him post about his surgery, it's not as if any of her readers could have gone to him for treatment anyway. He's in Syria

Sultaneh, if you read this, I address this paragraph to you:

If what you want is to stop the supposed theft of your surgery and use it to help Migraine patients, you're going about it all wrong. Attacking Teri isn't going to get you anywhere. It not only makes patients angry; it will make quite a few Migraine doctors angry too. You're directing your anger and frustration at the wrong people. Teri can't do anything about your problems with your surgery. Quit being a total ass.

It seems right to me to close with some comments from Teri. I emailed her, asking her about this situation and for comments that she would allow me to quote here. From Teri:

"I have no idea what Mr. Sultaneh's thinking is that's led to him repeatedly posting calling me a "killer" and accusing me of causing Migraineurs to take their own lives. He seems to think that if I'd allowed him to spam the forums I manage and post about his surgery, that here would be fewer suicides among Migraineurs. I can't figure that out. Certainly, the one young woman he uses as an example couldn't have gone to Syria for treatment even if she'd wanted to.

I don't know if his surgery has any value or if the surgeons he accuses of stealing it have based their work on his or not, and that's not something I could do anything about anyway. That's a situation that needs to be addressed by the courts and the medical community. That's not me, so I just don't understand why he's attacking me.

I did not recently (or ever) email him and invite him to post to any of my sites. Period. I'm sick and tired of his attacks, but I won't stoop to his level by saying negative things about him."

Namasté
Abi

Getting Migraine Care - My Turn To Vent

By now, I hope everyone who reads this blog knows that I care deeply about others with Migraines and their problems with getting treatment. Still, I'm seeing a trend that really bugs me.

What I'm seeing is Migraineurs who talk and talk about needing better care, but expect everything to be easy and essentially just handed to them. Let me explain. There are two main issues I'm seeing discussed:

1. Finding a good doctor. Too many people expect to find a real Migraine specialist very close to home. One woman lives about an hour's drive from one of the top Migraine specialists in the country, but says that's just too far away.
   
   Too far? Lots of people would be jumping with joy if a good specialist were that close to them. If you live in a big city, it can take an hour just to drive from one side of the city to the other.
   
   Truth be told, when I see someone saying such things, I can't help thinking that if their Migraines were really as bad as they say they are, they'd make that drive.
   
   
2. If it's not covered by insurance... Let me preface this by saying that I fully understand that some of us simply cannot afford doctors and medications not covered by our insurance. That's not the situation I'm talking about here.
   
   I'll use a friend of mine as an example of the type of situation I'm talking about... Jane (obviously not her real name) has horrid Migraines that keep her in bed for days at a time, usually three or four times a month. Jane and her husband both have great jobs that pay very well.
   
   Jane won't go to a Migraine specialist because there are none in her insurance network, so her insurance company won't pay for it. When her current neurologist suggested Botox to her, she wouldn't do it because, again, her insurance company wouldn't pay for it. Jane flat out told me that they could afford both the specialist and treatment not covered by insurance, but it would mean "cutting back."
   
   Now, for me, "cutting back" would mean cutting back on essentials, but for Jane, it might mean cutting back to two or thee cars instead of the five they have... cutting back on cable -- right now they get every cable channel available... actually cooking a meal instead of ordering food delivered or going out at least five nights a week... fewer designer clothes... and so on.

Many of us with "normal" incomes could trim some extras from our budgets to get to a specialist or pay for medications that aren't covered by insurance -- IF we were truly dedicated to getting better and having a better quality of life.

My insurance company won't pay for Maxalt, but it's the med that works best for me when I get a Migraine. So, I eat out less, but fewer clothes, rent DVDs instead of going out to the movies. And that's OK with me. No, I don't think it's right that my insurance won't cover Maxalt, but all appeals have been denied, and there's just no changing that. Rather than moan and groan about my insurance company... rather than being sick in bed every time I get a Migraine... I suck it up, take responsibility for my health, and do what I need to do.

How about you?

Shalom,
Abi

December Migraine Blog Carnival

Hello, Fellow Migraineurs!

The December edition of the Migraine Disease and Headache Blog Carnival is up, and it's a great one!

This month's theme is "Advice on and experiences with holiday season stress. I hope you'll take some time to go visit the carnival and read the posts.

The carnival this month is hosted by Teri Robert on MyMigraineConnection.com. To visit this month's carnival, JUST CLICK HERE!

Shalom,
Abi

Alternative Therapies for Migraine: October 09 Migraine & Headache Blog Carnival

The Headache & Migraine Disease Blog Carnival has been created to provide both headache patients and people who blog about headaches with opportunities to share ideas on topics of particular interest and importance to us.

The theme of the October carnival is Alternative therapies - your experiences (good or bad), thoughts about trying them or any other take on the subject.

This month's carnival has a lot of wonderful information about alternative, aka complementary, therapies for Migraines and headaches. It's well worth your time to go take a look!

Visit the Alternative Therapies for Migraine: October 09 Migraine & Headache Blog Carnival.

Some important Migraine posts

Namasté, my dear readers!

Although my own Migraines and daily life haven't left me much time for blogging recently, I've been thinking about everyone.

In lieu of trying to put together the required brain cells to blog today myself, I thought it would be a nice change of pace to share with you some of the blogs I've enjoyed lately. If you missed them, this will give you another chance to read some words of wisdom...

• On Somebody Heal Me, Diana is reminding everyone how urgent it is to speak up about some of the new regulations being considered about medications containing acetaminophen. See Reminder: Take Action on Proposed FDA Ban on Prescription Narcotics.
  
  
• At Her Life in a Nutshell, Joanna observed Invisible Illness Awareness Week by posting 30 Things About My Invisible Illness You may Not Know.
  
  
• New blogger Jon of Just a Migraineur posted an interesting entry on Searching Migraine Sites.
  
  
• On MyMigraineConnection, Teri Robert blogged Interview with Cindy McCain: Migraine Sufferer, Advocate. And I must note here that I'm extremely envious of Teri getting to sit and personally talk with Mrs. McCain!

I know I didn't get to everyone, and I hope you'll forgive me. Right now, my head and my family call!

Shalom,
Abi

Cindy McCain, Migraine Advocate

Last week was a great one for all of us with Migraine disease. We've been wishing for ages for a Migraineur who is very visible to the public to take up our cause, and it has happened at last.

Cindy McCain, wife of Senator John McCain, came forward last week. She not only shared about her own situation with Migraine, she came forward to advocate for all of us.

Author and patient advocate was there and interviewed Mrs. McCain. Among other things, Mrs. McCain told Teri,

"I'm going to put together an action committee to go door-to-door in Congress, particularly the Senate, to make them understand... to make them understand how little research there is, the huge number of people impacted... to make them understand what the economic problems caused by Migraine are too. We need to testify in front of Congress."

Sounds good to me! I hope you'll take a few minutes to read what else she told Teri during the interview. You can find it in Interview with Cindy McCain: Migraine Sufferer, Advocate.

And to Teri, thanks for always being there to represent us and get us all the information possible! Oh, and thanks for allowing me to use your photo!

Namasté,
Abi

The AHDA and Migraine Research - We CAN Help!

Hello! I know I've been remiss about posting, but family and personal matters have had me busy, busy, busy.

Anyway, this is to important to miss...

One of the biggest hurdles we face regarding Migraine treatment is the lack of solid research into the cause of Migraines and just what happens when we have a Migraine. Although there's been good progress, it's nowhere near that of some other diseases or what we need. That kind of research needs to be conducted so the researchers who are trying to develop Migraine and headache treatments have the essential knowledge to do their work.

The Alliance for Headache Disorders Advocacy (AHDA) was formed from this need and a 2007 event called Headache on the Hill (HOH). During that event, doctors, researchers, and patient advocates went to Washington to speak to members of Congress about this lack of NIH funding.

After HOH, the AHDA was formed, and at the appropriate times, they called on patients, family members, friends, anyone who cared to go to their web site and send emails to their members of Congress. They worked hard to make it so easy for us that it only took a matter of minutes to send those emails. The basic emails were already written, all we had to do was add any personal plea we wanted to make, and click a button.

Headache on the Hill is coming up again the end of this month. Migraine patient advocate Teri Robert tells us that yes, the AHDA will need our help again. They will need us to send emails, but as with most things political, there's just no way to tell exactly when that will be. It's possible that the AHDA will have very little warning of when we need to write to impact funding.

For that reason, it's very important that we be registered for the AHDA mailing list. When the need arises for us to send emails, being on their mailing list means that we'll get emails when we need to email Congress. Those emails will tell us what the issues are and have links to take us directly to a web page to send our emails.

Please, if you're not already on their mailing list, CLICK HERE to go to the AHDA site and register. The doctors, researchers, and patient advocates who participate in HOH for us take days away from their busy practices and work schedules to do this for all of use. We all need to back them up by sending emails when it's time.

So, pretty please? Go to their site and register, AND please ask everyone you know to do so too.

Namaste,
Abi

Migraine Podcast: Welcome Back, MigraineCast!

It seems that my all-time favorite podcast is back! Some time ago, Teri Robert started MigraineCast, a podcast chock full of great information and tips about Migraines and headaches.

It's been a while since the last podcast, and when I emailed Teri about it a while back, she apologized, saying that she'd been so busy with all of her work that MigraineCast had taken a back seat for a while. She promised that it would be back in 2009.

True to her word, Teri has published the first MigraineCast of 2009. Appropriately, it's titled Living Well in 2009 Despite Migraines and Headaches. To listen to this new podast, GO HERE. If you're an iTunes user, look for MigraineCast on iTunes!

Thank you, Teri!

Namaste,
Abi

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