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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

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

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

If you’ve read many Migraine blogs or participated in some of the online Migraine forums, you’re bound to have heard of Dr. Ali Sultaneh. Sultaneh is a Syrian surgeon who has been claiming to be able to permanently cure Migraines with a surgical technique he developed.

Sadly, Sultaneh is probably better known for his vitriolic rhetoric than any contribution to Migraine research and treatment. He has been repeatedly asked to leave forum not only for spamming, but also for his vicious and defamatory attacks on people who dare disagree with him. He’s also become well known for complaining that other doctors have “stolen” his surgical technique, a technique that he didn’t bother to patent.

Interestingly, while doing a Google search for Migraine surgery, I came across a 2002 article about Sultaneh and his procedure on WebMD. For the article, reporter Salynn Boyles talked with both Sultaneh and Dr. Seymour Diamond, Founder of the Diamond Headache Center in Chicago. Now retired, Dr. Diamond is well knows for his expert treatment of headache disorders including Migraine, research, and authoring many research papers and books in the field of headache disorders. In the article, Diamond is quoted as saying:

We have learned in recent years that migraines occur in the deep blood vessels that surround the brain and within the brain, not on the superficial scalp arteries that [Sultaneh] is talking about. This dubious surgical approach just doesn’t match what we know happens with these headaches.

Sultaneh has written me several times, mostly to defame health care professionals and lay experts in the field. I admit to having been more than a bit sarcastic about him. It’s hard not to when rather than doing something useful, he has been whining, griping, and lashing out at people who have done nothing to him.

Still, I seriously find myself feeling sorry for him. I think we all hope that, at the end of our lives, we’ll have accomplished something, left behind something that’s of significance. Unless Sultaneh stops making defamatory and libelous comments about others and gets back to the business of practicing medicine, his legacy is likely to be of no significance at all. It’s truly sad.

Best,
Arabella

Source: Boyles, Salynn. “Experimental Surgery Being Used to Treat Migraines.” WebMD. March 19, 2002.

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

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

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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