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July 2017

Sunday Thoughts on Living with Migraine: Time to Play

Sunday-Thoughts-VioletsGood morning to my extended Migraine and Headache family. I hope last week was as kind to you as possible.

Last week, I learned a valuable lesson from Binx, the cat who owns us. Binx is a young cat, just a year old, so there's still a lot of kitten in him and his behavior.

I believe very firmly that bringing a pet into our home carries the responsibility to do everything possible to see to it that he's healthy and happy. Binx seems to firmly believe that it's his responsibility to follow me everywhere I go when I'm home. It appears that I've become a piece of cat furniture and one of his favorite toys.

Binx500bA few days ago, I went upstairs from my office to get a glass of tea. Binx followed me and was running in circles around me. When I walked down the hall to our bedroom, he ran ahead of me and jumped up on our bed, where be began attacking imaginary things under the blankets. 

Obviously, Binx was in the mood to play. I sat down on the bed, put my hand under the blanket, and let him stalk and pounce on it for a while. Then, he bopped me on the nose with his paw and tore off running down the hall. I did what I was supposed to do at that point, and followed him. As I walked out of the hall and into the dining room, a black flash came out of hiding and wrapped all four paws around my ankle.

After playing with Binx for a good half hour, I went back to my desk. I'd been having trouble with an article I was writing, but suddenly, the rest of it came easily. 

What hit me is that I've been so busy lately that I've not only been neglecting Binx, I've been neglecting myself too. We all need "play time," time away from work and the concerns of daily life. So, that's the lesson Binx taught me, and it's amazing how much it's helped me. 

Do YOU take time to play and relax? Remember that when we're stressed or not taking care of ourselves, we're more susceptible to our Migraine triggers. Take a bit of time to play, and have a great day!

Live well,

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

 

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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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 drawing on our inner Ninja to live a full life
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Sunday Thoughts on Living with Migraine: Types of Migraine

TulipThoughtsGood afternoon to my extended Migraine and Headache family. I hope the day is being as kind as possible to you and your head. 

Migraine is a complex neurological disease. As you probably already know there are several types of Migraine, and getting a full and accurate diagnosis is critical to Migraine treatment and management. In the various areas of medicine, it's common for professional organizations to work together to define classification systems for diagnosis. In "headache medicine," the gold standard for diagnosing and classifying Migraine and other headache disorders is the International Headache Society's International Classification of Headache Disorders, 3rd Edition (ICHD-3).


TypesOfMigraineI've been seeing a lot of online discussions with people talking about what type of Migraines they have. Unfortunately, all too many of these discussions include types of Migraine that aren't the "standard" diagnoses from ICHD-3. This can happen when doctors aren't experienced with treating Migraine. It can also happen when people have been reading inaccurate online content. 

In any case, I thought it would be helpful to provide you with a list of types of Migraine from ICHD-3:

1.1 Migraine without aura

1.2 Migraine with aura

1.2.1 Migraine with typical aura

1.2.1.1 Typical aura with headache

1.2.1.2 Typical aura without headache

1.2.2 Migraine with brainstem aura

1.2.3 Hemiplegic migraine

1.2.3.1 Familial hemiplegic migraine (FHM)

1.2.3.1.1 Familial hemiplegic migraine type 1

1.2.3.1.2 Familial hemiplegic migraine type 2

1.2.3.1.3 Familial hemiplegic migraine type 3

1.2.3.1.4 Familial hemiplegic migraine, other loci

1.2.3.2 Sporadic hemiplegic migraine

1.2.4 Retinal migraine

1.3 Chronic migraine

1.4 Complications of migraine

1.4.1 Status migrainosus

1.4.2 Persistent aura without infarction

1.4.3 Migrainous infarction

1.4.4 Migraine aura-triggered seizure

1.5 Probable migraine

1.5.1 Probable migraine without aura

1.5.2 Probable migraine with aura

1.6 Episodic syndromes that may be associated with migraine

1.6.1 Recurrent gastrointestinal disturbance

1.6.1.1 Cyclical vomiting syndrome

1.6.1.2 Abdominal migraine

1.6.2 Benign paroxysmal vertigo

1.6.3 Benign paroxysmal torticollis

A1.6.5 Vestiblular migraine

If your diagnosis is simply "Migraine" or "chronic Migraine" it's an incomplete diagnosis. Many of us have more than one type of Migraine. For example, my diagnoses are chronic Migraine, Migraine with aura, and Migraine without aura. What's your diagnosis? If it's an incomplete diagnosis, or if it's a type of Migraine that's not included in the list above, a conversation with your doctor is in order. 

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