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July 2017

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

 

MigraineNinja200

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