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Archive for the ‘Migraine’ Category

One of my readers, renaissanceguy, made a couple of comments yesterday. In one of them, he made an excellent point. He said,

This blog is amazing, and I applaud you for exposing lies and presenting truth. While I agree with you, I want to urge caution.

You don’t want to give people the impression that no relief is possible. I think that with your heavy emphasis on there not being a cure, at least not yet, you might make people think that they are doomed to find no relief at all.

He’s right. I don’t want to make people think we’re “doomed.” We’re not. In writing this blog, I often write about people claiming they have a “cure” for Migraines. Some of the reasons I write these “cure-busting” posts are:

  • Some of these people are making big bucks from selling us information that we can find other places online, FREE.
  • Some of them are making money from selling us products, “medical” services, or theories that have not been proven. Some of these even claim to be the “cure” for multiple diseases.
  • We all need to know the truth, that Migraine is a disease that can’t be cured yet. There ARE good treatments that can help us live better, easier lives, but we need to know the truth and be realistic.

Let me say this for the record. We are not doomed to live hopeless lives because of Migraines. There are excellent treatments that can both stop Migraines once they start and prevent Migraines. Migraine preventive medications can help make our Migraines less severe, shorter, and less often. The disease cannot be cured, but it can be managed.

Taking renaissanceguy’s comment to heart, I’m going to start doing a different type of post on a regular basis, one that highlights some of the truths I’ve come across recently. After all, we do need to see the positive too, don’t we?

Here are some truths I’ve seen recently:

There have been a couple of blog entries recently that were about the difficulty of living with Migraines, how they can drive people to the point of suicide, and how to deal with these feelings. This is a tough, but important, topic, so I want to give you links to those too:

In closing, I want to thank renaissanceguy again and all the bloggers out there who are sharing the truth.

Have a good weekend!

Best,
Arabella

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Today I’m going to take a break from exposing the bad side of Migraine information on the internet to discuss a truth. More Migraine research is sorely needed. Anyone reading this probably already knows that. Another truth is that a major factor holding back Migraine research is funding for that research.

The Alliance for Headache Disorders Advocacy (AHDA) has been working to get the amount of funding from the National Institutes of Health (NIH) increased. They have some sobering statistics about Migraine and research funding:

  • Headache disorders cause more than 1 percent of all disability and 9 percent of all lost labor in the US every year.
  • Migraine alone is the 12th most disabling disorder in the US.
  • Headache disorders are the most prevalent neurological disorders, affecting more than 90% of all Americans.
  • The US annual direct and indirect economic costs of headache disorders exceed $31 billion.
  • The NIH expended less than $10 million in 2006 towards all research on headache disorders, comprising less than 0.05 percent of its total budget. (Yes, that’s less than ½ of 1%.)

In their latest update, the AHDA reports progress in the form of appropriations bill report language and a planning meeting with the NIH. I congratulate them on that progress, but the increased research dollars aren’t a reality yet.

Yesterday, I can across an article by Teri Robert about the Migraine Research Foundation (MRF). A bit about the MRF:

The Migraine Research Foundation is committed to furthering the understanding of the causes and mechanisms of migraine, helping to develop improvements in treatment, and finding the cure. We believe that migraine research is very important and under-funded. As a result, MRF is actively seeking to provide seed money grants for projects that are important, achievable, and innovative that will ultimately lead to better treatment and quality of life for migraine sufferers.

The MRF is now accepting research proposals for their next round of grants. There’s more information about that in Migraine Research Foundation Announces New Request for Proposals.

The AHDA has worked tirelessly to increase the amount of research funding Migraine gets from the NIH. Their news of appropriations bill report language and the planning meeting with the NIH is indeed good news and very welcome. I don’t want to be negative, but given the state of the U.S. economy, I have to wonder how long it will be before that progress turns into real dollars available for Migraine research. I’m not an expert on this, but I suspect the length of time we wait for those dollars will be tied to the length of time it takes our economy to recover.

In the meantime, I’m glad to see other organizations stepping in to raise research funds. Along with the Migraine Research Foundation, there’s a new foundation started by the American Headache Society, the American Migraine Foundation.  Instead of waiting for the government to fund more research, maybe we need to put more emphasis on the MRF and AMF. Maybe, when we have a few dollars to spare, we need to donate to these foundations. It’s something to think about.

Best,
Arabella

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Last week, I shared that MigraineCast, a great Migraine podcast is back. I just discovered that Teri Robert, who produces MigraineCast, tried something new yesterday. She did MigraineCast’s first video podcast, Migraines, Headaches, and Sleep: A VideoCast.

As soon as I watched it, I emailed Teri to tell her I hope she does more of them. If you love great Migraine information as much as I do, you’ll be interested, so I’ll share part of her reply:

… That particular video wasn’t made with podcasting in mind, so the video quality isn’t as good as I’d like it to be. But, now I know that I can do video podcasts as a part of MigraineCast, I’ll be doing more of them in the future…

That’s good news for all of us!

Best,
Arabella

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So, thanks to Google alerts, I just came across one of the biggest crocks I’ve seen so far. The person who wrote the featured article, Common Myths About Optical Migraine Symptoms*, is either seriously misinformed or delusional.

First, as has been discussed here, the term “optical Migraine” may be used in many places on the internet, but it’s not a form of Migraine as recognized by the International Headache Society’s International Classification of Headache Disorders, 2nd Edition (ICHD-II), which is the gold standard for diagnosing and classifying types of Migraine and other headache disorders. “Optical Migraine,” is misused all over the place, and depending on who you see us it where, it can be used to mean something different each time you see it. OK, let’s pause for a moment here. Why am I explaining this yet again, when I can just point you to an article that says it better than I ever could? To understand why I’m saying using the term “optical Migraine” is a bad thing, take a look at this article by Teri Robert: Ocular, Optical, and Ophthalmic Migraine.

In short, THAT ARTICLE is the biggest myth I’ve seen!

Here, please imagine a great television announcer saying…

But wait! There’s more…

A link at the bottom of this pathetic excuse for an article takes you to a web site that has a section on… Yes, you guessed it… Migraine types! Here are the types of Migraine this person lists, with the incorrect ones in grey, crossed-out type:

  • Hemiplegic Migraine
  • Basilar Migraine
  • Menstrual Migraine
  • Optical Migraine
  • Ocular Migraine
  • Migraine Aura (I’ll give her this one; it’s Migraine with aura.)
  • Retinal Migraine
  • Abdominal Migraine
  • Complicated Migraine
  • Hormonal Migraine
  • Tension Migraine
  • Transformed Migraine
  • Visual Migraine
  • Cluster Migraine

Six out of 14? I could go on, but why? What I’ve already written is enough to warn anyone that this article and the site it links to aren’t worth the time it would take to click on the link.

This article and site leave me with one question: Why the hell do people who haven’t a clue what they’re talking about insist upon writing articles and web sites?

Seriously!

Best,
Arabella

* Note: I have further reason to question the site this article was on. This morning, I found this blog deactivated. When I asked why, it was because of the link to this article. To keep my blog, I needed to remove the  link. Wow!
Note added 09/04/10

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See the woman to the left? That’s how I felt when I read the title above, the title of an article I came across today. Seriously?!

This article is on a site that calls itself “Migraines & Headaches Health Center.” Again, Seriously?!

There is one good thing about the title -we already know the article is most likely going to be worthless.

Before I proceed, I need to make a confession. I’m out of patience with all the misunderstandings, misconceptions, and outright lies that abound about Migraines on the internet. That means that I’m not in the mood to be even marginally nice and polite about this article. So, I’m just going to come right out and say this — The article sucks, and the person who wrote it is an idiot.

Allow me to quote bits of the article and comment on those bits, please:

The main symptoms of migraines are a pulsating headache accompanied by nausea and diarrhea.

Wrong. This person couldn’t have done any research. Neck pain, vomiting and photophobia are experienced more frequently than diarrhea.

The article then discusses triggers a bit, a section not really very accurate either, then comes the closing paragraph:

Once the person identifies the root of the problem and avoids those situations most people have had reduced migraines and there are positive results. Avoiding certain foods, excess alcohol consumption, intake of caffeine and any such foods that bring on migraines helps a lot. Know what causes your migraines and avoid it and you will be able to live almost without them in future.

Seriously?! Wouldn’t it be nice if it were that simple? There are many, many triggers that cannot be avoided. I’m sure you already know that, but obviously, the idiot who write the article either doesn’t know or just doesn’t care.

Even with the best trigger identification and management, there are millions and millions of use who will NOT “be able to live almost without them in the future.”

Ordinarily, I’d give you the link to the article, but this time, I’m not going to. The coward who write the article has “closed” comments, so we can’t even give him or her any feedback. Some people look to see how many times their articles are read, and typically, when articles are read many times, those who wrote them thing that means the article is good. Since I won’t feed into that kind of thinking on this one, no link.

Please, please, pretty please, if you want to write articles about Migraines, do your research so your articles are accurate. Articles such as this one are no help whatsoever.

Best,
Arabella

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There’s a site that I’ve been watching in horror for a while now. It’s called “Migraine Symptoms Guide,” and is described as “Information on migraine causes, symptoms and treatments.”

One of the articles on it is “What is an Ocular Migraine?” I think we’ve covered before that the term “ocular Migraine” is used fairly commonly around the Internet, BUT when you see it, you’ll never know just by seeing the term what people are talking about. You see, it’s one of those “types of Migraines” that uninformed people talk about, but it’s not an “official” form of Migraine. For the sake of clarity, the gold standard for diagnosing and classifying the various headache disorders, including Migraine, is the International Headache Society’s International Classification of Headache Disorders, Second Edition (ICHD=II).

I held off on writing about this particular article because Teri Robert had posted a couple of comments, and I wanted to see what the response might be. The first time she commented, Teri explained about the classification system and pointed out another error in their article. They had stated that “there is no treatment for these Migraines. The author posted a reply thanking Teri for the clarification and saying, “We have updated the article accordingly. Indeed, they had NOT. All they had done was add a couple of sentences about preventive treatment, preventive treatment without any research to support it at that.

Teri patiently posted a second comment that not only said that they’d missed her main point about “ocular Migraine,” but went so far as to give them a listing of the types of Migraine outlined in the ICHD-II. As I write this, their article remains unchanged.

Enter Teri’s colleague at MyMigraineConnection.com, Nancy Bonk. On Wednesday, Nancy wrote a fantastic post, “Ocular Migraine” – Not, and Why Not. Nancy wrote quite clearly and unequivocally that there really is no such thing as “ocular Migraine” and why using the term is such a bad idea. Yours truly went to the Migraine Symptoms Guide site/blog and posted a comment with a link to Nancy’s blog post.

Now, here’s the kicker! I just read the comments posted to Nancy’s blog. There’s one from the person who wrote the ocular Migraine article! Because of Nancy’s post, she’s “totally reworking the article.” Yes! Good job, Nancy!!

There is, however, something a bit sad about her comment to Nancy. It’s sad that she didn’t heed the TWO comments Teri left her. It’s sad that she totally ignored those, and she only felt moved to do something after I posted the link to Nancy’s blog post.  Was it ego that made her ignore Teri’s comments? Is it such ignorance of the leaders in the field that she didn’t recognize Teri? Whatever the reason was, it’s sad that this article is still online. I can’t tell when it was first written, only that the first comment on it was posted on January 16. If Scarlett, who wrote the article, were genuinely concerned about its inaccuracies, she’d take it down until it was reworked and corrected. AND, if she’s serious about wanting it to be accurate, she’ll do better research this time. Oh, Scarlett, maybe you should try talking to Teri OR reading her book.

Now, I’ve spent a good bit of time talking about ONE article on Migraine Symptoms Guide. When you go to the main page of the site/blog now, you find the article, “Different Types of Migraine.” I wish I could say that article is better, but it’s not. It lists more types of Migraine that aren’t accurate diagnostic terms:

  • Exertion Migraine: That’s not a type of Migraine. Exertion can trigger ANY form of Migraine.
  • Ophthalmoplegic Migraines: Nope. Check the ICHD-II. It’s not there.
  • Basilar Artery Migraine: Has been called Basilar -Type Migraine for 10 years or so now, and the description is inaccurate.
  • Abdominal Migraine: Description is wrong. Says, “This is the only kind of Migraine that doesn’t involve pain in the head.” Absolutely wrong. You can have lots of different types of Migraine without the headache. When that happens, the DESCRIPTIVE term is “acephalgic” or “silent.”

If the people who write this site/blog were docs, we might call them “quacks.” I don’t think they are, so let’s just say they’re pathetically misinformed and don’t know good research from well… I won’t go there.

Best,
Arabella

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Greetings, dear readers!

Today, I get to report what I consider to be yet another “cure” scam without doing much work. Over on MyMigraineConnection.com, Teri Robert is reporting on “No More Migraine,” yet another cure e-book, from SufferingFromMigraine.com.

It seems that John Benak claims that taking a certain brand of a certain vitamin complex has cured his Migraines. It also seems that he’s so all-knowing that he says it’s safe for everyone, including children. It also seems that he feels that being down on his luck and out of a job entitles him to scam people. What a creep!

But, rather than go into more detail here, I’ll send you to the truth as written by Ms. Robert. Please take a look at her review of “No More Migraine.”

Best,
Arabella

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