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Archive for the ‘Migraine disease’ 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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Roberta posted a comment on my post, Dr. Seymour Diamond Comments on Sultaneh’s Migraine “Cure,” asking why I won’t publish comments that Sultaneh submits to my blog. Since there may be others who have the same question, I’ll answer it here.

Dear Roberta,

If Sultaneh submitted comments that were constructive and polite, I’d publish them to my blog. His posts though are usually rants about how he was wronged, spam with links to promote his “cure,” or quite nasty comments about other people. His comments about other people go beyond nasty. Some of them are defamatory and potentially libelous.  Therefore, I refuse to publish his comments because that gives him another platform to continue his malicious and unproductive behavior. Earlier today, he posted a comment calling me a “liar.” Why would I publish such a comment. Why would any blogger? Not only that, he attempts to post comment after comment. He’s posted three so far today.

No, since Sultaneh seems to be incapable of being polite, his comments will not be posted on my blog.

Best,
Arabella

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There is a vast amount of information about Migraines on the internet. We know that some of it is excellent, and some of it is, bluntly, crap.

Writing only about the bad info and the schemes and scams is taxing and boring. Since the name of this blog is “Migraine Truth,” I reserve the right to break the boredom by writing about truly good information from time to time.

Today is one of those days when I’m going to share a wonderful site with you, MigraineCast. MigraineCast is a site of podcasts about Migraines and related issues. I’ve followed MigraineCast since it first went online in 2007. There hadn’t been any new podcasts for some time, until this week. Wednesday, a new podcast was published, The Migraine Research Foundation and Their Sweepstakes.

I was thrilled to see the podcast was up and listened to it immediately. Quickly, I emailed Teri Robert, the creator and producer of MigraineCast to ask if MigraineCast is coming back on a regular basis. Teri replied:

Yes, Arabella, MigraineCast is back. It’s doubtful that I can keep up with doing weekly podcasts  as I used to, but there will be at least one new podcast per month. I’m going to be doing things a bit differently, and having guests for many of the podcasts. The guests will include Migraine specialists, researchers, people from nonprofit organizations, patients who are on their own journeys toward better Migraine management and more…

YES! This is great news for all of us with Migraines. MigraineCast podcasts have always been excellent, and it’s good to have them back. I hope you’ll visit www.MigraineCast.com and listen to some of the podcasts. You can listen to them directly from MigraineCast.com or find them in iTunes. There are directions on the site.

Best,
Arabella

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On his blog, Dr. Brad Shook is proclaiming “Migraines are Curable!” He based this blog entry on a new research paper by Migraine expert Dr. R. Allan Purdy.

Although the title of Dr. Purdy’s article is “Migraine us curable,” Dr. Purdy is not saying that the disease is curable at this time. In fact, he states:

“At present there is no evidence that migraine is a curable disorder or disease and any thoughts in that direction have proven futile to date. Given that migraine clinically and pathophysiologically is a complex neurovascular phenomenon, it is of interest to explore its potential curability.”

To his credit, when I pointed this out to Shook by commenting on his blog, he did respond. However, he still states,

“This means the cause of you migraines may be from the loss of regulation of nerves around blood vessels in your head, which are regulated by your brain and brain stem!  So if this proposed cause holds true, if you  fix your brain you  fix your migraine!  I have observed in practice, that this, “brain problem” is in fact the cause of many migraines.  There are other causes that have to be considered, and sometimes there is not an answer.”

He would also like readers of his blog to visit him to find their “cure.”

Truthfully, I don’t have a strong enough background in reading journal articles to really understand all of Dr. Purdy’s paper. I also don’t have the contacts in the Migraine medical community to ask for help. So, I have asked your friend and mine, Teri Robert, to take a look at Dr. Purdy’s paper, reach out to some of her contacts (if necessary), and comment on it. Teri’s mother (also a Migraineur) passed away last weekend, so her plate is quite full at the moment. She told me that she will, as soon as she can, take a look at Dr. Purdy’s paper and Dr. Shook’s blog and get back to me. I will definitely let you know what she says and post a link if she should decide to write about this issue herself.

In the meantime, I have to say that Dr. Shook’s blog title is misleading at best. Were he truly concerned about the health of his patients and potential patients, he wouldn’t be proclaiming that “Migraines are Curable!” when this disease is definitely NOT curable at this time.

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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