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Posts Tagged ‘Migraine disease’

When it comes to Migraine truth, nobody tells it better than patient advocate Teri Robert. On her blog at www.PuttingOurHeadsTogether.com, she’s started a new series that I absolutely love – Migraine Pearls or Onions?

She started this feature in late January, and it’s quickly become one I watch for. Here are her “Pearls” and “Onions” so far:

Go, Teri!

‘Nuff said.

Best,
Arabella

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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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“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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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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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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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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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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