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Posts Tagged ‘Migraines’

For those of you who experience Migraines, are any of you NOT affected by the stigma attacked to Migraine disease? I doubt it. The stigma is pervasive, even in today’s supposedly better educated and informed society.

We get it at work, at school, even at home and at church.

Now there’s research showing how that stigma affects us. It’s pretty startling, and it’s pretty sad. A new Migraine podcast posted today on www.MigraineCast.com is part one of two about Migraine and stigma. This podcast has two Migraine specialists who conducted the research and are willing to speak openly and honestly about stigma.

For some truth about Migraine and stigma, check out Migraine and Stigma, Part 1, on MigraineCast.

Best,
Arabella

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Migraines or not, I like peace and tranquility in my life. I tend to be somewhat Zen about things, believing in a higher power and in Karma. What I send out into the universe will be returned to me.

When I started this blog dedicated to the truth about Migraine disease, I knew there would be times when it messed with my peace and tranquility. Times when I’d take a lot of heat for what I said here. I decided I could do it, that I just wouldn’t take things personally. But, because I’ve seen other people sorely abused by the people who become angry with them, I also made a decision. A decision that I would write this blog under a nom de plume, a pen name. I don’t want people emailing me at my personal email address, searching the internet for my home address or phone number, fussing at me on a personal level. A couple of bloggers I asked about this thought it was a great way to keep things from getting too personal. So, although the information on the “about” page is correct, nobody knows my true name.

You may wonder why I’m telling you this now. I’m telling you now because I also want to say a few things about what I blog and how people respond. My goal is to talk about treatments and theories I see online and am concerned about, not the people behind them. To post about writings that are truthful and correct or are mistaken, incorrect, or just old science. But, people take things very personally sometimes, and they lash out at people who write something they don’t like. Because I get so many spammers trying to post comments to this blog, all comments have to be approved by me before they’re published. People who want to comments don’t have to share my thinking or agree with me, but they do have to exercise common courtesy. Nasty comments are not approved; they are deleted along  with the spam.

The internet has been great for us. It’s been an explosion of information available, far more than ever before. On the other hand, it has its drawbacks. I’m glad I decided to write under a nom de plums, but dislike the reasons I feel I need to. For all the personal information available, the internet is still very impersonal in a way. People will write things to other people that they’d probably never say to someone’s face. They’ll express anger at a level that would probably considered assault and have people calling the police were they to express it in person.

In the end, this is my blog, and I’ll post or not post comments as I see fit. If you understand that, great! If you don’t understand it or don’t like it, please go read someone else’s blog and just skip mine.

Best,
Arabella

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“Yes, Migraines are curable.” Well, we know better, but that’s the first sentence of a blog that Nancy Bonk wrote about today on MyMigraineConnection.

Dr. D. is an ND, a naturopathic doctor. From looking at her site, it would seem that Dr. D. considers herself an expert on a number of topics ranging from “Digestion and Elimination” to “Aging and Antioxidants” to “Everything Else.” Okey dokey. I’ll not comment further on that.

Anyway, Dr. D. disagrees with the really great doctors who have devoted entire careers to treating and/or researching Migraine disease. She says Migraines are not genetic, that they are curable.

I’m not going to steal Nancy’s thunder here. So, please go read what Nancy wrote in Doubtful “Cure” for Migraines Forever.

Oh, and… Go, Nancy!

Best,
Arabella

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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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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.

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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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The claim is “Migraines Down 75%, Medications Down 95%, My Drug-Free Insider Secret.”

Julieann, the author of this e-book, talks about “managing Migraines instead of suffering with them.” Sounds good, doesn’t it?

Author and patient advocate Teri Robert shelled out the bucks to buy this e-book and review it.

I’m not going to steal Teri’s thunder by revealing what she had to say. I hope you’ll take a few minutes and read it for yourself. Please check out Review: Migraines Managed by Teri Robert.

To Teri – Thanks for doing this for all of us!

Best,
Arabella

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