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.

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

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

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 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

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.

Whining about Migraines -- Here's some honesty!

It can be really hard to know what to say to someone suffering with a Migraine or headache. You want to be kind, sympathetic, helpful. I would imagine that if you're a professional in the field -- educating, supporting, and advocating for Migraineurs -- you have to walk a fine line. You'd want to do all that being kind, sympathetic, but you might not know how to handle (drum roll, please)... the whiners and drama queens! OK. I've said it, the "w" word. Some of us can be whiners. If you frequent message boards, you know the type. About once a week (if you're lucky, it's ONLY once a week), they post virtually the same "vent" they posted the week before. Some of them will even ask for advice. The problem is that they never take anyone's advice, and they never get off their butts and do anything about their situation.

I don't think I've used this word to describe Teri Robert before, but she's brave. Yesterday, she wrote a blog entry entitled "Yes, Migraines and headaches are awful, but don't be a whiner or drama queen!" Damn! I almost spit coffee all over my monitor when I read it. She was more diplomatic about it than I could have been, but that's Teri. If anyone knows what a Migraineur goes faces, she does. If anyone understands the dangers of falling into whining, she does.

What Teri did in her blog that maybe nobody else knows how to do is to explain the difference between "venting" and "whining." She even explains how to vent without whining.

Way to go, Teri, and thanks!

Namaste,
Abi

News, news, and more news from the American Headache Society conference!

Every Migraineur's dear friend Teri Robert at MyMigraineConnection spent last week in Chicago at the 49th Annual Scientific Meeting of the American Headache Society. Teri attends this conference every year and always returns home with fodder for many articles in which she shares with us what she learned -- written in a way we can actually understand! To me, her articles are always more valuable than most "news" articles written on Migraine because she goes deeper and into more detail than most people who write on Migraine and Migraine news.

Already, her blog entries from the conference and the first article to come out of the conference proceedings have me waiting with great anticipation for more. Here's some of what she's shared so far:

• Greetings from Chicago - the American Headache Society Conference. This is a fun post where Teri shares a video of her "remote headquarters."
  
  
• Reporting from Chicago - A new Migraine abortive in trials. Merck has released results from their Phase II trials of MK-0974, an investigational oral calcitonin gene-related peptide (CGRP) antagonist. Teri spoke with Dr. Tony Ho, senior director of Clinical Neuroscience for Merck Research Laboratories to give us a great report on what's happening with this new medication. It looks very hopeful, even for Migraineurs with a history of heart or stroke issues!
  
  
• Back from the American Headache Society conference! Ever wonder what some of the "famous" doctors we read about look like? Teri has shared some super photos of a few of them.

When you get a chance, check out Teri's reports. If you haven't already, consider subscribing to the MyMigraineConnection email newsletter. It's a great way to keep up on what's new!

To Teri -- Thank you, as always, for looking out for all of us and sharing so much valuable information. Oh, and a belated happy birthday!

Shalom,
Abi

A good question for Migraineurs...

What could someone else give you to make your life with headaches or Migraines easier?

What gift would you give yourself?

These are the questions Teri Robert asked on her site at About.com. They're great questions, and she has some wonderful suggestions.

Check it out!

Shalom,
Abi

MAGNUM, My Site of the Day

If you're a Migraineur or know someone who is, this is a web site you need to visit and bookmark! There are other organizations for headaches and Migraines, but MAGNUM is the only nonprofit organization devoted specifically to Migraine DISEASE.

MAGNUM was founded by Michael John Coleman, who has suffered with this disease since he was a child. The organization has a superlative staff and board of directors including my mentor Teri Robert. The MAGNUM site is one you can count on for accurate information from trusted professionals in the field.

From the MAGNUM site:

MAGNUM: Migraine Awareness Group: A National Understanding for Migraineurs, was created to bring public awareness utilizing the electronic, print and artistic mediums, to the fact that Migraine is a true biologic neurological disease, to assist Migraine sufferers, their families, and coworkers, and to help improve the quality of life of Migraine sufferers worldwide.

MAGNUM also has an excellent Migraine Blog. This is another site to bookmark!

On a related note, if you have a few extra $, a donation to MAGNUM helps ALL Migraineurs. A donation is also a great Christmas gift for Migraineurs you know. MAGNUM is a 501(c)(3) charity, so donations are tax-deductible.

Shalom,
Abi

Every Migraineur should wear medical ID!

Can you remember every important detail of your medical history and all of your medications info when you have a Migraine? I certainly can't, and any doctor who treats us needs to know those things. Put that together with the always possible accident, and we could have a recipe for an enormous problem. That's why I strongly believe that EVERY Migraineur should wear some kind of medical ID.

Teri Robert at About.com has created a really cool new "gallery" of some of the medical IDs available. Why not check it out?

I usually wouldn't say this, but...

Dr. XXX and nurse YYY deserve to have a three-day unremitting Migraine. I need them to have one, and one that I know about at that!

Last night was pure hell. Between my menstrual period beginning, barometric pressure changes, and forgetting my sunglasses yesterday, I ended up with truly horrendous Migraine attack that began during the evening. Triptans and rescue meds hadn't touched it by midnight, so I went to the closest emergency room for assistance.

Maybe it was a gigantic error to have asked the triage nurse if I could have a cold pack while I waited. Maybe she was just in a bad mood. Whatever the problem was, her response was, "You can wait your turn or you should just take your headache and go home." Being an inventive person, I sent my husband to the vending machine that dispenses cold drinks in cups with ice to bring back two of them. I then dumped the contents of my waterproof cosmetics pouch into my purse, put the ice in the pouch, and used it for an ice bag.

When it was finally my "turn" for triage, the first words out of the nurse's mouth were, "Just where did you get that? I told you to wait your turn." Sorry, but what a bitch! Compassionate health care professional, my ass. At that point, my husband interjected that I had filled my cosmetics pouch with ice from soft drinks that he purchased from their vending machine. Did the nurse apologize? No. She actually snorted! She then went on to say that a headache wasn't an emergency, she didn't know why I was there taking up valuable time, and that if I thought anyone was going to be foolish enough to give me narcotics, I was sadly mistaken.

Enough! I very calmly and quietly explained to this intellectually, emotionally, and morally challenged so-called nurse that I work for a prominent Migraine and headache specialist and would, in fact refuse narcotics if they were ordered. I told her that I had never encountered such unprofessional, uncaring, and rude behavior from a nurse in my life and that she owed me an apology. Her reply was, "I owe you nothing, and if your attitude does not change, you will not be seen in this emergency department." My husband ignored her, but told he that if I didn't file a JCAHO complaint, he would. At that point, this "nurse" sent me back to the waiting room to "wait my turn."

Unbelievably, the doctor was as bad if not worse. I was lying on the bed in the exam room when he came in, and he informed me that I would sit up if I expected him to treat me. Then he said that he didn't see any reason for me to be there, that since I work for doctor, I should have just waited until I went to work and let him treat me. At that point, I'd had enough. I'd had more than enough. I'd been trying very hard not to vomit since arriving at the hospital. Well! I wasn't going to try any longer. I winked at my husband who tried valliantly not to grin, sat up as the doctor had ordered, and just waited for him to shine his penlight in my eyes. Have you anticipated what happened next? As soon as he was in my face with his little penlight, I vomited. all over his clothes and shoes. What he said next, I won't even recount here. Let it suffice to say, he could have been stellar had he done a residency in profanity. When he finished his little tirade, he offered me an Imitrex injection despite the fact that I'd already taken two doses of Maxalt. Told me it was Imitrex or nothing. My husband told him to get my discharge orders and to be sure that his full name and license number were on them. The fool actually asked why. My husband simply replied, "because you're required to do so if we so request, and that's all you need to know. If you're too stupid to realize what you've done here, I'm not going to waste time explaining things you should have learned in med school while my wife lies here in pain and untreated." My hero!

Driving was not a good idea this morning, so my husband took me to work. My boss took one look at me and invited me into his office. While I was telling him what had transpired in the ER, he gave me some Reglan for nausea and asked a nurse to set up IV infusion of mag sulfate to stop the Migraine. After that, a coworker drove me home.

I don't really expect much to come of it, but my husband has already filed a complaint with JCAHO and requested an appointment with the hospital administrator. So, even though I'd like to be a bigger person, I really hope both that doctor and that nurse are struck with the worst headaches of their lives!

The Nourishing Meme

Surfing around today, I came across a blog entry on Teri Robert's blogs, About Headaches and Migraine and Putting Our Heads Together. It was called, as this one is, "The Nourishing Meme." It's so lovely and thought provoking that I want to share it with you.

A meme, according to Webster is an idea, behavior, style, or usage that spreads from person to person within a culture." According to Wikipedia, the term meme "coined in 1976 by Richard Dawkins, refers to a unit of cultural information that can be transmitted from one mind to another. Dawkins said, Examples of memes are tunes, catch-phrases, clothes fashions, ways of making pots or of building arches. A meme propagates itself as a unit of cultural evolution analogous in many ways to the gene (the unit of genetic information)."

This meme asks five questions. Here are those questions and my answers:

1. What is the most nourishing thing you frequently do for yourself?
   Light incense, lie back on the floor, and do relaxation exercises or visualization.


2. For your health, what will you never compromise on?
   Medications and medical care. No matter how tight money is, I keep some put back to pay for medications and doctors' appointments.


3. Where do you get most of your health information?
   Online, from books, and from my doctor.


4. What single whole food or supplement has turned your health around?
   Water!


5. What is your favorite natural therapy?
   Torn between aromatherapy and flower essences.

Now, for the challenge. I invite Droolie of "droolie's corner o' the planet" and Deborah of "weathering the migraine storms" to pass on this meme on your blogs. Tag! You're it. ;-)

Ours is an invisible illness

I'd never thought about it this way before, but Migraines are invisible. What got me thinking about this was the About.com newsletter I received in my email this morning. There was a link in it to an article about National Invisible Chronic Illness Awareness Week, which is this week. I'm going to put a snippet of it here and hope you'll follow the link to read the rest. It's really interesting. Actually part of it is pretty startling!

"Our Illnesses May Be Invisible, but They're Very Real"
by Teri Robert at About.com Headaches / Migraine

Living with chronic headaches and Migraine disease, we have something in common with 96% of people who live with a chronic illness -- our illness is invisible. That doesn't make it any less real, painful, or debilitating.

• Nearly 1 in 2 Americans (133 million) has a chronic condition.
• 96% of them live with an illness that is invisible.
• The divorce rate among the chronically ill is over 75%.
• Studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides.

Please go to About.com to read the rest of this article.

By the way, the About.com newsletter is fantastic, and it's free!

Shalom!