As if it's not difficult enough for people with Migraine disease to travel, United Airlines has stigmatized, inconvenienced, and just plain mistreated a Migraine one of us. 

On Christmas Day, Sunny Intwala reported on Facebook:

"This morning, I was treated horribly on UA flight 1976 from Phoenix to Newark. I was having a terrible migraine and experiencing nausea and got up to use the bathroom, but the flight attendant was extremely rude to me and wouldn’t let me use the First Class bathroom even though it was visibly unoccupied and we were sitting in First Class - Instead, she told me to go use the Economy bathrooms, which were occupied. I had no choice but to use a paper bag. Instead of asking if I was okay, the flight attendant demanded I get off the plane right away..."

Here's the Facebook post:

United uses the slogan you can see in the image above:

"The United difference
Connecting people. Uniting the world."

Seriously? Actions speak louder than words, and the United employee who first insisted that a First Class passenger use the economy restroom, then demanded that he leave the plane because he was ill with a Migraine attack certainly makes that slogan appear to be a total fabrication. 

The question now is whether United will respond and take any action. More than 39 million people live with Migraine disease in the United States alone. Is this how United employees are trained to treat people with potentially debilitating neurological diseases? I've flown United many times, and — until now — they were my preferred airline. If and how they respond to this atrocity will determine whether I continue to fly United.

The actions I'm taking:

• Write and publish this blog post.
• Share this post on Facebook, including on United's Facebook page.
• Send a message to United through their Facebook page.
• Tweet the URL to this post. (@TRobert)
• Tag United on Twitter. (@United)

Will you join me?

If those of us living with Migraine disease don't stand up for ourselves and for each other, we really can't expect others to do so. Will you join me in asking United to step up to the plate and address this shameful incident? Please join me by:

• Sharing the link to this post with your friends.
• Share this post from my Facebook page.
• Comment on United's Facebook page and send them a message from their page.
• Retweet the link to this post from Twitter.

Live well,

 because a migraine is NOT "just a headache"
Visit MigraineDisease.com

 drawing on our inner Ninja to live a full life
Visit Migraine.Ninja

June is National Migraine and Headache Awareness Month, and there are a number of easy ways in which everyone can participate. Below are just two of the ways you can participate this year. 

Break the Silence

Over the years, I've worked on several sites and blogs about Migraine disease, among them, MigraineDisease.com. Mostly due to lack of time, MigraineDisease.com has never been as good as it could be. Well! That's changing!

On May 1st, 2018, an all new MigraineDisease.com will be launched. I've teamed up with Migraine and headache patient educator and advocate Tammy Rome and her husband Brian to build the ultimate site for education, support, and advocacy/awareness. Here are some things to know about our new site:

• All of the content on the site will be original content, not content copied from other sites and writers.
• Every piece of content is reviewed by a UCNS certified Migraine and headache specialist for accuracy.
• Our experienced patient educators have a total of 300+ continuing education hours in "headache medicine."
• We have a medical advisory board consisting of practicing physicians and psychologists who specialize in treating patients with Migraine and other headache disorders.
• We're Migraine and headache patients too. We know what it's like to live with these diseases/disorders.

For 18 years, I've written Migraine and headache content for About.com and the HealthCentral Network. Don't get me wrong — they've been good years, and I continue to write part-time for HealthCentral. But, it's also a dream come true to write for a site where my partners and I will set the editorial direction for the site and make our own decisions about editorial and other issues. 

I've had Migraines since I was six-years-old. Have gone back and forth between episodic and chronic Migraine, with times during which I had a Migraine every day. Tammy has both chronic Migraine and Cluster Headaches. We both feel incredibly fortunate to be able to attend the same continuing education conferences that Migraine and headache specialists attend, to have built a network of colleagues we can call upon for information and explanations, AND to be able to write content that allows other patients to better understand their Migraines and/or headaches and be better prepared to work as treatment partners with your doctors. We'll also be continuing to develop ways to offer you the support you need to retain hope and live better. Finally, MigraineDisease.com will always provide you with awareness and advocacy information so you can participate in those efforts — in simple, quick ways and in more in-depth ways, depending on your circumstances and wishes.

We're working hard to be ready to launch our new site on May 1st. For now, please visit MigraineDisease.com, and sign up for email updates and announcements.

Live well,

 because a migraine is NOT "just a headache"
Visit MigraineDisease.com

 drawing on our inner Ninja to live a full life
Visit Migraine.Ninja

Good morning, and happy Sunday to my extended Migraine and Headache family!

A few years ago, I met two remarkable women, Jacki Ochs and Susanna Styron. They're award-winning filmmakers, and they were at our annual Headache on the Hill Headache and Migraine advocacy event in Washington, D.C. 

The reason they were at Headache on the Hill was the new documentary film they were working on, Out of My Head. 

To explain the film, I borrow their words from The Migraine Project web site:

"Migraine is a devastating but fascinating neurological disease with a compelling story to tell. Alice in Wonderland, Vincent Van Gogh, Sigmund Freud and Saint Hildegard von Bingen all figure into its colorful history.

Our film looks at the entertaining details, and the big questions too — the source and management of illness, the economic cost of human disability, the nature of pain and suffering — while shining a spotlight on the frontiers of neuroscience and the exploration of the brain.

Most importantly, you will hear courageous and wondrous stories directly from migraineurs."

I recently saw the trailer for the film, and it's magnificent. But, don't take my word for it. Watch the trailer yourself:

Out of My Head will debut next month in Vancouver at the International Headache Congress, and I'm excited that I'll be there for its first screening. Plans are underway for more screenings. Keep an eye on The Migraine Project web site for scheduled screenings. You can also find them on Facebook.

Live well,

 because a migraine is NOT "just a headache"
Visit MigraineDisease.com

 drawing on our inner Ninja to live a full life
Visit Migraine.Ninja

Good morning to my extended Migraine and Headache family! I hope all of you are doing as well as possible.

In a more perfect world, everyone would be kind and compassionate, and they'd understand people living with debilitating diseases. The sad fact, however, is that we don't inhabit such a world. We also live in a time when, thanks to examples set by some of our leaders, it seems to be acceptable to criticize people, call people names, and be downright nasty. 

Since we have to live in this world, it would serve us well to find ways to educate others about Migraine disease, it's impact, and us - the people who live with Migraine.

I've written about various ways to raise awareness and advocate for ourselves. Last week, I observed some discussions about Migraine that gave me a bit of insight into something we may be doing that weakens our efforts and may cause people to take us less seriously. 

What I'm referring to is how we sometimes talk about our pain levels and how ill we feel. Let me offer you a few examples taken from recent online discussions:

• "I've had a 12/10 Migraine for three days now."
• "My head is going to explode, literally."
• "The nurse in the ER rolled her eyes when I told her my Migraine was at least a 13."
• "My pain is at a 10, but this aura is totally off the scale; I can't see anything."

I totally understand that the pain and other Migraine symptoms can push us to the edge. But statements such as those above contain huge issues. Let's look at each statement:

• "I've had a 12/10 Migraine for three days now."
  Most people use a scale of zero to 10 to scale pain, with 10 being the worst pain imaginable. It doesn't do any good to say we're beyond 10. If we're talking with a doctor, he's asking us to scale our pain so he can better decide to help us. We're not helping him help us when we exceed 10. If we're talking with other people online for suggestions and support, saying were at 12 out of 10, many people are going to dismiss us, thinking that nobody could be online if they were in that much pain.
• "My head is going to explode, literally."
  Seriously? Nobody's head is going to "literally explode" from a Migraine. Don't shoot the messenger here, but statements such as that one are a good way to get branded as a "drama queen." This type of statement leads to less understanding, not more.
• "The nurse in the ER rolled her eyes when I told her my Migraine was at least a 13."
  Well, the nurse shouldn't have rolled her eyes, but again, that's a result of "exaggerating" and going beyond the limit of the pain scale. 
• "My pain is at a 10, but this aura is totally off the scale; I can't see anything."
  I didn't see this one myself. A friend related it to me, and she was wondering how the person could see to post the long post this was taken from if she had a Migraine aura so bad that she "couldn't see anything."

I realize this is a sensitive topic for some of us, but I'm asking you to give it some consideration and not shoot the messenger here. When we're in a lot of pain and/or experiencing other extreme symptoms, it can seem natural to exaggerate a bit for effect. But, such exaggerations shine the wrong light on Migraine disease. Such statements are unlikely to make other people want to understand better. They're more likely to elicit the response someone got from the ER nurse, eye rolling. 

When we're seeking medical care, it's important to be as accurate as possible so we can help the doctors and others help us. 

There's another potential negative impact of such statements. Instead of reducing the social stigma associated with Migraine, they're more likely to reinforce and perhaps even worsen that stigma.

Let's find ways to express our pain that put people on our side, wanting to learn more, wanting to help us. Many people don't realize that Migraine is a genetic neurological disease... that we can have a Migraine every day... that sometimes the nausea, light sensitivity, and other symptoms can be so severe that they're incapacitating even without the headache. Here's something else many people don't realize - even if our pain level is low or moderate, perhaps a four or five, having that pain day after day wears on us. 

Please give this issue some thought. It truly is important.

Live well,

 because a migraine is NOT "just a headache"
Visit MigraineDisease.com

 drawing on our inner Ninja to live a full life
Visit Migraine.Ninja

Good afternoon and happy Sunday to my extended Migraine and Headache family!

We're always looking for ways to get people to understand Migraine disease and it's impact on us. Myths and misconceptions still abound AND continue to feed the social stigma associated with Migraine.

In the last few weeks, I've had occasion to speak with people who don't have Migraine themselves, but care about the Migraine patient population. In a meeting with about 40 people present, one asked me how we can combat the stigma. It was a moment during which I'd know that question was going to be asked so I'd have had an answer prepared. But I didn't have advance warning, so I shared the first thing that came to mind...

We can help reduce the stigma by removing the phrase, "Migraine headache" from our vocabulary.

Here's my reasoning:

• One of the most prevalent and damaging misconceptions about a Migraine is that it's "just a headache." When a great many people hear the phrase, "Migraine headache," they don't truly hear the "Migraine" part. All they hear is, "headache," so they think of a "simple" headache that should respond to Tylenol, Advil, or some other over-the-counter remedy. They're drawing on their own experience, so they're thinking of the mild tension-type headache that about 85% of the population experiences at some time during their lives. 
• Migraine attacks can and do occur with no headache. When that happens, they're described as "acephalgic" or "silent" Migraines. 
• When headache does occur during a Migraine attack, it's only one symptom of the attack.
• The symptom of headache alone is insufficient for a diagnosis of Migraine. There must be accompanying symptoms.

It's easy to forget how much power words can have, but once we think about it, we can begin to harness that power and use it to our advantage in awareness and advocacy efforts. 

I hope you'll join me in this simple effort that can have enormous impact. When talking about an individual Migraine episode, let's say "Migraine attack." When talking about the condition, let's say "Migraine disease" to help people realize that Migraine is indeed a genetic neurological disease. Once we do this for a while, it becomes habit, and we do it without even thinking about it.

Live well,

 because a migraine is NOT "just a headache"
Visit MigraineDisease.com

 drawing on our inner Ninja to live a full life
Visit Migraine.Ninja

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Sunday Thoughts on Living with Migraine: After Awareness Month - Putting Our Heads Together

Good afternoon, and happy Sunday to my extended Migraine and Headache Family!

Migraine and Headache Awareness Month (MHAM) was in June, but the need to raise awareness never ends. Lack of awareness in the general public results in:

• the perpetuation of myths and misconceptions about Migraine, Cluster Headaches, and other Headache disorders
• the continuation of the social stigma associated with Headache disorders
• discomfort and reduced quality of life for people who have Headache disorders

So it's important that we strive to raise awareness all the time, not just during Migraine and Headache Awareness Month.

Since you're reading this, it's a given that you spend some time online. Social media outlets such as Facebook and Twitter are magnificent ways to share information and raise awareness! They're easy to use, and quite a bit can be accomplished with minimal effort. That makes them great tools for those of us whose time and energy are limited by chronic Headache disorders.

One easy way to keep track of awareness and advocacy opportunities is to keep an eye on my Facebook page. I'm constantly posting links to educational articles about Migraine and other Headache disorders, Migraine and Headache treatments, and events such as Headache on the Hill and Migraine and Headache Awareness Month. Simply sharing these links on your Facebook page is a quick and simple way to help raise awareness.

If you're looking for the most recent information about Migraine and other Headache disorders and their treatments as well as support and advocacy and awareness info, check out our HealthCentral Migraine Management group on Facebook.

A don't-miss source of information and support is the American Migraine Foundation's Move Against Migraine campaign. You can check it out on the American Migraine Foundation web site or through the widget below.

There are many ways to raise awareness year-round. I've barely scratched the surface here. If you have ways to raise awareness that you'd like to share, please leave a comment, and tell us about them. 

Live well,

 because a migraine is NOT "just a headache"
Visit MigraineDisease.com

 drawing on our inner Ninja to live a full life
Visit Migraine.Ninja

Good morning, and happy Sunday to my extended Migraine and Headache family!

The past week gave me much to think about as I spent time in several Migraine groups on Facebook. There was so very much going on, including:

• Wonderfully constructive conversations about diagnoses, treatments, and awareness.
• Great questions asked, then answered by community members who truly care about helping each other.
• The sharing of links to some truly splendid articles and blog posts.

Unfortunately, there was also a downside to some of the activity, including:

• A heart-wrenching post from a young man who has lived a long time with chronic Migraine, is losing hope, and is talking about giving up.
• Some genuinely nasty comments from people who disagreed with what someone else had said, but seemed unable to be civil about it.

These last two items frustrated me for two main reasons:

1. Hope is our best tool for living with Migraine and other headache disorders. It gives us the strength we need when our treatments aren't working, and the burden of our disease/disorder seems especially heavy. We must cling to that hope and share it with others. There are some ground-breaking treatments in development for Migraine and Cluster Headaches. With help so close, this is not the time to lose hope or give up.
2. I simply don't understand the nastiness. It hurts not only those on the receiving end, but those being nasty. When someone is needlessly nasty toward others, I can't help but think that they're deeply unhappy people. 

It all comes down to balance and harmony...

We will always have both joy and sadness, pain and relief, hope and despair. That's a basic fact of live we can't change. What matters is how we deal with sadness, pain, and despair. And it matters a great deal how we treat other people along the way. Being nasty is a good way to end up isolated and alone. 

We need to seek balance and harmony. If there are times when we're in pain or despair, we need to exercise caution in how we interact with others. If we're interacting in writing, such as participating in Facebook groups, we need to reread what we've written before posting. If it's unkind, edit it, or just don't post until we feel better. During such times, it's also perfectly fine to post, explaining how we're feeling, and get support from others.

I'm an administrator or moderator for several Facebook groups for people with Migraine and other Headache disorders, and it's difficult. Last week, at the same time that I was trying to reach out to someone in real trouble, I was also dealing with people who were being so nasty to other people that I wanted to reach right through my computer monitor and smack them.

To those of you who manage to stay kind and helpful when you're in pain yourself, bless you! To those of you who post nasty comments to others, please stop and think. You're hurting both others AND yourself. Please look for balance and harmony.

Live well,

 because a migraine is NOT "just a headache"
Visit MigraineDisease.com

 drawing on our inner Ninja to live a full life
Visit Migraine.Ninja

Related articles

Thoughts on Living with Migraine: Raise Awareness, Reduce Stigma

Sunday Thoughts on Living with Migraine: I Need Your Advice - Putting Our Heads Together

MHAM 25: Migraine and Headache Management Means Different Things to Different Peop

MHAM 7: Naming Your Migraine or Headache

MHAM 6: Migraine and Headache Treatment Approaches