An interesting site and blog I came across are at www.headache-adviser.com. The woman who writes and runs the site is a physician assistant practicing in neurology. She says she has “been specializing in headache medicine for over seven years” and lists other qualifications that make her an “expert.”
After that introduction, you’re probably wondering why I’m writing about her and the site and why part of the title of this entry is “When ‘Experts’ Can Confuse.”
The answer is actually pretty darned simple. In “headache medicine,” most specialists follow the gold standard for diagnosing and classifying headache disorders – the International Headache Society’s International Classification of Headache Disorders, 2nd Edition (ICHD-II).
There are health care professionals who give diagnoses that aren’t part of the ICHD-II, which might not be so confusing but for one detail. They don’t use these diagnoses consistently. One of the most frequently used of these so-called diagnoses is “ocular Migraine.” It’s not part of ICHD-II, and you can find it online used to describe all kinds of different symptoms from a Migraine with a mild visual disturbance to a Migraine that causes full blindness in one eye to any Migraine that has the visual aura, but no pain.
And this is what’s confusing about Migraine-Adviser. I’m not even going to go into the types of headaches she talks about that aren’t in the ICHD-II, but here are some supposed types of Migraines she writes about:
- Vestibular Migraines (She also says, “the name for this is just another name for vertiginous Migraine.”
- Cluster Migraine Variant
- Complex Migraines (She lists weakness on one side of the body as a symptom of “complex Migraine.” A check with a couple of Migraine specialists and researchers verified for me that the only form of Migraine with actual motor weakness as a symptom is hemiplegic Migraine.”
- Ocular Migraine
Oh, and here’s an interesting side note. This “expert” attended the International Headache Society meeting lass month. OK. Well, maybe she’s unfamiliar with the IHS diagnostic criteria and classification system.
In any case, the point is that it’s disappointing to see sites that could do so much good possibly adding to all the rest of the online confusion instead.
Best,
Arabella ♥
Arabella she gets an awful lot of traffic, too, her site is Alexa listed at around 200,000. I’m trying to figure out why.
Hello Arabella,
Since I have linked to your site and posted favorably about the work you are doing, I am a bit confused as to why you should basically slam mine?
I am considered an expert in my field among Physician Assistants. I have lectured nationally at PA conventions and have lectured numerous times regionally in my area.
I have written headache protocols, do research BASED on the International Headache Society’s classifications.
I do not mean to confuse my readers, but rather explain headache types without using the headache classifications. This only serves to confuse many patients who are not well educated in medicine. I have found that using colloquial terminology makes it easier to understand.
Just so you know “complex migraine” is the more simple term for hemiplegic migraine…but in the world of the internet that is the keyword more people search for.
Mary Kay Betz MS RPA-C
Hello, Mary Kay,
I realize you are considered an expert, and even though you may not think so, I do respect that. That was part of my point.
“Complex Migraine” is the more simp-[le term for hemiplegic Migraine by whose definition? That too is part of the confusion. In doing a web search, I found many, many references to “complex Migraine, and not one of them mentioned hemiplegic Migraine. Many of these were also from experts.
From Harvard Health Publications, Harvard Medical School, on MSN Health and Fitness:
“Some people suffer from what we call complex migraines. These are migraine headaches accompanied by neurological symptoms. The symptoms that can occur during an episode include:
• Difficulty moving one side of the body
• Slurred speech, difficulty finding words
• Imbalance
• Vision problems”
From Dr. Robert H. Shmerling at Aetna’s InteliHealth:
“A “complex migraine” is one in which there are neurological symptoms such as weakness, loss of vision or difficulty speaking in addition to the headache. In fact, a complex migraine may be mistaken for a stroke.”
Before I wrote this article, I talked with two other experts who attended the IHC in Philadelphia in September. They both agreed that the inconsistent use of terms such as “complex Migraine” can be quite confusing to patients and that they prefer that their patients read sites that use diagnostic terminology from the ICHD-II. One of them stated that when a term such as “complex Migraine” IS used, they wouldn’t have a problem with it if the ICHD-II diagnosis were there as well. That seems like a good solution to me — using both the formal ICHD-II terms and the “more simple” terms.
Best,
Arabella
Hi Arabella,
I totally agree..confusion abounds. Sometimes I will see someone and the incoming diagnosis is “complex migraines, rule out strokes”. So you see, the doctor sending me the patient is using it and then the patient tells me that is what they have!
You are clearly up on many terms used in the world of headaches but most people aren’t..many have only a high school degree and if medical terminology is thrown at them they actually get a bit mad…so I am back to explaining in simpler terms.
Round and round I go..
Mary Kay