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Migraine forums can be great.

Migraine forums can be great. They’re so valuable for helping us not feel so alone, for sharing information. They’re great when they’re run right. Here are a few things to explain what I mean by “run right:”

  • Migraine forums should be free of spam and scams. People with Migraines can be so desperate that we’ll try pretty much anything. Spammers and scammers know that, and they prey on us to make “easy money.”
  • Migraine forums should be free of trolls, people who post to forums just to start an argument.
  • Migraine forums should be free of flaming. People should be required to post to each other with decency, courtesy, and mutual respect.
  • Migraine forums should be free of posts that defame or libel others. Members shouldn’t be allowed to post defamatory, inflammatory, or libelous information and comments about others. If they feel they must say something about someone, they must be required to provide proof.
  • Migraine forums should be well moderated to address the points above.

With most of the forum services and software available, the forum “owner” can set up other members to share the work and serve as moderators. Most forums also have a way for members to report problems to the moderators. When forum owners are too busy or when they have health issues of their own that keep them from monitoring and moderating their forums, the responsible thing to do is to ask one or more members to be moderators.

When Migraine forums go bad, they can’t be as helpful to as many people. I’m not going to say which forum I’m talking about in the example I’m going to use because I respect the owner and don’t want to hurt her feelings. What I am going to do is visit that forum and use the forum feature that allows members to report problems, and see what happens.

So, for the example:

This forum has been around for a long time, probably ten years or more. As someone explained to me, the owner used to be fairly active on the forum, but after some changes in family circumstances, isn’t able to actively participate. She didn’t want to close the forum because there are members who have come to count on it. It’s generous if the owner to keep the forum running for those members.

The forum has developed some serious problems thought. I’ve never posted there, but frequently read the forum, so I’ve seen these problems for myself. Spam posts on that forum are deleted sometimes, sometimes not. An infamous spammer/troll repeatedly posts to the forum, often posting out of control, being nasty, defamatory, and libelous in his postings. I’ve seen it take weeks for those posts to be removed from the forum. The most recent problem member that I’ve observed started posting on July 15. He or she wrote some very serious negative allegations about a leading Migraine doctor and researcher. Members replied, telling the new member to essentially “put up or shut up.” The member in question has not posted any proof of the allegations. One member of the forum told me via email that she has used the report feature on the forum several times to ask that the posts be removed. As of now, they’re still there.

This might not seem like a big deal, but consider the fact that these forum posts often pop up in internet searches. Also consider that some people believe everything they read on the internet.

This forum is a prime example of a good Migraine forum gone bad. I hope the owner of the forum somehow finds her way to this blog, considers what I’ve said, and sees that the forum is better moderated in the future. We need good forums. Crossing my fingers for this one.

Best,

Arabella

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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

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AboutWe NEED more good Migraine sites. So, I’ve kept hoping that the About.com site for Migraine and headaches would get better. But, it hasn’t, which is especially sad considering that it used to be THE best. Over the last couple of years, however, it has gone downhill…

  • For a rather long period of time, perhaps two years, there was no “guide” for the site. Nobody keeping it running, adding anything new, blogging, reporting news in the field, sending newsletters, etc.
  • Their forum, as the rest of the site, used to be THE best. No longer. There seems to be no moderation. Nobody is there to help members find good information. Spammers and scammers run amok. This is actually quite irresponsible. Migraineurs are often so desperate for relief that they’ll try pretty much anything. That leaves them very vulnerable to these spammers and scammers.
  • Some of their articles leave me shaking my head. For example, from their newsletter today, All About Basilar-Type Headache. Now, come on! They’re not Basilar-Type Headaches; they’re Basilar-Type MIGRAINES! When you look at the sources for this article, you see “Migraine,” not headache.  This article isn’t written by the “guide,” Dr. Foley. It appears to be some kind of licensed article. This is what it says at the bottom of the article: “LifeWire, a part of The New York Times Company, provides original and syndicated online lifestyle content. Betsy Lee-Frye is an independent journalist living in Kansas City, Mo. Her work has appeared in the Dallas Morning News, Better Homes and Gardens Special Interest Publications and the St. Joseph News-Press.
  • Interestingly enough, when you click on one of the related searches, “basilar headaches,” the results that come up are articles containing conflicting information:

Rolling EyesWell, I suppose I could continue, but it seems pretty pointless.  It’s just disheartening to see what was once one of our very best resources now failing so badly.

Best,
Arabella♥

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Bella-logoOn July 12, I wrote Disappointing: Bella Online Headaches / Migraines.

Well, I have to say that I don’t find Bella’s Migraine site disappointing today. Today, I find it downright frightening.

Today, I came across Robinson’s article Topamax For Migraines. I think we’ve all been taught that prepositions such as “for” don’t need to be capitalized in titles since at least junior high school, but it’s not her lack of writing skills that frightens me. What frightens me is that she really doesn’t seem to know much about her topics. Allow me to quote from this Topamax article:

Today, Topamax is growing in popularity as a migraine treatment not only because the product works but because the side effects are less serious.

What? The side effects of Topamax are less serious than what, Ms. Robinson? She doesn’t mention that some of the “visual problems” include glaucoma that can result in permanent loss of vision. She doesn’t include some other potential side effects that have earned serious FDA warnings:

  • oligohidrosis (decreased sweating) and hyperthermia
  • birth defects if taken by pregnant women

I don’t know Heather Robinson, and bear her no ill will. However, I find it disturbing that she writes for an online network and publishes pieces that are incomplete at best; incomplete to the extent of being inaccurate.

Please, if you’re one of her readers, verify any information you find in her writings before accepting it as correct. Be safe. Be healthy.

Best,
Arabella ♥

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JankkDid you know you can subscribe to Google alerts to have notices of new information on web sites and blogs delivered to you via email? It’s a wonderful service!

Lately, I’ve received several Google alerts to postings on jankk.com, a blog where the header reads:

Migraine Help, Migraine Headaches
Having Migraine Headaches? You need to treat it right.

The form of this blog is that the administrator posts a question as a blog entry, and readers post answers. Seems rather a strange format, but it could work.

One post / question that particulary caught my attention was, “What Are Basilar Migraines and Hemiplegic Migraines.” When I first saw this, there were a couple of answers that seemed that they might be good, but the links in them didn’t work. When I looked again, a great Migraine writer and advocate has posted very informative links on both basilar-type and hemiplegic Migraines. It was looking as if the blog could be pretty valuable, very recommendable.

However, when I returned to see if the first links had been fixed, the later posts with working links had been deleted.

So, what’s the deal with this blog? Why does this person keep doing it? I don’t really know, but there are two possibilities I can think of:

  1. He or she is hoping that others will post detailed answers without links, thus adding to the value of the blog.
  2. He or she just hopes people will click on the Google ads so he or she can make $$ from our misery.

Whatever the reason, it really stinks that the administrator of this blog is so small-minded, so self-aggrandizing, so egocentric that he or she is threatened when others post valuable links in response to the questions posed.

If you’re looking for good Migraine blogs, don’t waste your time on Jankk’s. It’s sad… It’s pathetic… It sucks.

Best,
Arabella♥

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Bella-logoI’ve never paid a lot of attention to Bella Online, but some of their articles about Migraines and headaches have been showing up on Google, so I took a look today. It grieves me to say that I was very disappointed. Yes, it truly does grieve me. We so desperately need two things:

  1. More sites about Migraine disease and headaches.
  2. For the sites that exist to be accurate AND well written.

It’s the second point, of course, that makes Bella’s Headaches / Migraines Site so very disappointing. Let’s take a look…

Is the site accurate? No:

  • On the page where editor Healther L. Robertson lists headache types, she lists Eye Strain Headaches and Sugar Headaches. Under types of Migraines, she lists Eye Migraines, Menstrual Migraine Headaches, and Nocturnal Migraines. Yeah, right. I guess Ms. Robertson hasn’t heard of the International Headache Society’s International Classification of Headache Disorders. The second edition of that document (ICHD-II) is the gold standard for classifying headache disorders, and she’s talking about diagnoses that don’t exist there. My impression? Amateur hour.
  • She discusses “Basilar Migraines, also known as Bickerstaff Syndrome.” She’s a couple of iterations behind on the name of this form of Migraine. For many years, it was called Basilar Artery Migraine, and it’s been called Basilar Type Migraine for many years now.
  • She lists “Cheese, wine and some common food additives like nitrates found in processed meats” as potential triggers for Basilar Type Migraines. What about all the other potential triggers?  All in all, her research on this article seems to have been very limited and perhaps flawed. Or did she research it at all?
  • Ms Robertson calls her list of potential Migraine triggers overwheliming when it’s not even very thorough.

Is the site well written? No:

  • The first sentence of Robertson’s Headache Basics article begins, “Allot of people suffer from headaches…” UGH. It should have read, “A lot of people suffer from headaches…” I could go on with the weaknesses in her writing, but it really isn’t worth the time.

Will I be returning to Bella? No. Not I. After looking at their Headaches / Migraines site, I won’t even bother to look at any of the others.

Disappointing. Very disappointing.

Best,
Arabella♥

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nfh185We all love good news, and we’d all love it if it turned out that there were positive aspects to having Migraine disease.

Back in November, the media was buzzing, reporting that having Migraines decreases a woman’s risk of breast cancer by 30%.

Yesterday, the National Headache Foundation blogged “Migraineurs have a lower incidence of breast cancer. Their blog entry began:

A silver lining for women who suffer from migraine has been discovered—researchers have determined that female migraineurs have a significantly lower chance of developing breast cancer than women who do not have migraines.

Overall, women with a history of migraine showed a 30% decrease in the incidence of the most common types of breast cancer.

You may ask what’s wrong with what they wrote. If you’ve been reading my blog very long, you know I’m going to tell you.

What’s wrong is that the study had some serious shortcomings. For one thing, patients in the study weren’t medically screened for Migraines. It all hinged upon the patients telling the researchers that they had Migraines. Many Migraineurs are undiagnosed, and some in that study may not have told the researchers they have Migraines. And, how many of us have had people tell us they have Migraines too just because they have a bad headache? So, some may have said they have Migraines when the indeed do not.

I don’t want to prolong this, so I’m going to give you two quotes from Migraine experts to further demonstrate my point about this study:

From Dr. Stephen Silberstein, director of the Jefferson Headache Center:

This study doesn’t prove anything. It’s not that I don’t believe the results, it’s that the results are not believable.

From Dr. Ellen Drexler of Maimonides Medical center:

Migraine brains are more sensitive to many exogenous and endogenous factors, of which falling estrogen levels are an important one for many female Migraineurs,…. However, female Migraineurs are not known to have consistently lower levels of estrogen than are non-Migraineurs… genetic factors may also be playing a role, as well as exogenous factors such as medication use, smoking and alcohol use, which may vary between Migraineurs and non-Migraineurs…

So why did the NHF’s blog entry state that there’s a silver lining, that women with a history of Migraine showed a 30% decrease in the incidence of Migraine — with no qualifiers on the statements?

I don’t know why, but it’s disappointing. We should be able to expect more from such a large, prominent organization. We should be able to expect them to give us perspective on such studies, not just regurgitate the statistics.

Best,
Arabella♥

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