Sunday Thoughts on Living with Migraine: Out of My Head

Sunday-Thoughts-VioletsGood 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

 

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Sunday Thoughts on Living with Migraine: Expressing Pain

TulipThoughtsGood 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

 

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Sunday Thoughts on Living with Migraine: Say Migraine, Not Headache

TulipThoughtsGood 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.

MigraineHeadacheAttack

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

 

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Sunday Thoughts on Living with Migraine: After Awareness Month

TulipThoughtsGood 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

Advocacy-All-Year-300So 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

 

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 drawing on our inner Ninja to live a full life
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Sunday Thoughts on Living with Migraine: Balance and Harmony

SundayThoughtsGood 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.

Migraine-We-Can

Live well,

 because a migraine is NOT "just a headache"
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Thoughts on Living with Migraine: Raise Awareness, Reduce Stigma

SundayThoughtsGood afternoon and happy Sunday to my Migraine and Headache family!

Living with Migraine, Cluster Headaches, NDPH, and other Headache disorders isn't for wimps! The physical burden alone can be debilitating and sometimes more than we think we can bear. Then there's the emotional burden — the grief of losing parts of our lives, the guilt for not being able to work or care for our families as we'd like to, the too-frequent feelings of hopelessness, and more. When we add the burden of the social stigma attached to these diseases/disorders, it's staggering.

All of that said, we have far more power over Migraine and other Headache disorders and their impact than we might think. I recently attended the American Headache Society's Annual Scientific Meeting in Boston, and am so excited and encouraged by the news of new treatments in development. Great progress is being made with four new CGRP Migraine treatments. One of them has now been submitted to the FDA for approval, and the other three are getting close. GammaCore's vagus nerve stimulator has now been approved for the acute treatment of episodic Cluster Headache. The ATI Neurostimulaton System is doing well in clinical trials, and I expect we'll see it win FDA approval for treating Cluster Headache soon. We still, of course, have a long way to go, but I'm very encouraged by all of these new developments.

Unfortunately, we haven't made as much progress in increasing public awareness of these diseases/disorders or in reducing the social stigma. There are many reasons for this, but I fully believe that part of the responsibility lies with us, the patients who live with them. If we sit back and expect others to raise awareness and reduce stigma for us, it will never happen. We must each stand up and speak out. We can't continue to hide if we want things to get better. Everyone who is able to read this is able to join in awareness activities to some extent. It can be as simple as putting awareness statements on your Facebook page, Tweeting or reTweeting, or simply sharing a good article we find. 

We're more than half-way through Migraine and Headache Awareness Month (MHAM), but there's still plenty of time for each of us to participate to the extent that we're able. Visit Migraine Ninja or my Facebook page if you don't know where to start. 

Here's a little cartoon I created for MHAM. You're welcome to post it and share it as long as you don't make any changes to it.

MHAM-4-Panel

If you're already involved in raising awareness and reducing stigma, THANK YOU! If not, what are you waiting for?

Live well,

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

 

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Sunday Thoughts on Living with Migraine: I Need Your Advice

SundayThoughtsGood afternoon, and happy Sunday to my extended Migraine and Headache family!

June will soon be upon us, and it's Migraine and Headache Awareness Month. As I've been making plans for Awareness Month, I've been thinking about what we did in previous years, and find myself a bit stumped. So, today, I'm turning to you for some advice.

Every year, several organizations and individual advocates devise Awareness Month activities hoping to engage as many Migraine and Headache patients as possible. The purpose of these activities is to raise awareness of Headache disorders in the general public and reduce the social stigma associated with them. These activities include:

  • printing an awareness sign, taking a picture of yourself with it, and posting it to social media
  • the sale of awareness month shirts and other items
  • daily prompts for writing blogs and posting to social media outlets such as Facebook and Twitter.

The problem is the low rate of participation in these activities, and this is where I turn to you for advice. Would you pretty please, with a cherry on top, either post a comment below or use the email button in the right column of this blog to share your thoughts with me? I'd love to hear your thoughts on why Awareness Month participation is low. Do we need different or additional activities? If so, what might they be? Do you have ideas about why participation is low?

I'd be remiss if I didn't take this opportunity to thank everyone who has participated in Awareness Month activities in previous years, so thank you! Together, maybe we can find ways to get more people involved this year and in the future.

Live well,

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

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 drawing on our inner Ninja to live a full life
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