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

• Migraine Pearls or Onions? 1/20/11
  Onion: The article “Headaches, Migraines Easily Handled,” by Debbie Nicholson
  Pearl: Her Facebook friends who joined her in posting comments on that article.
• Migraine Pearls or Onions? 1/26/11
  Pearl: The Migraine Research Foundation
  Onion: the e-book The Migraine Relief Guide
• Migraine Pearls on Onions? 2/7/11
  Pearl: The American Headache Society
  Onion: The article “Headache and Migraine Migraine Medication Types,” by Cricket Webber at BellaOnline
• Migraine Pearls or Onions? 2/15/11
  Pearl: The National Headache Foundation
  Onion: A jerk at the pharmacy.
• Migraine Pearls or Onions 2/23/11
  Pearl: Go Red for Women, the American Heart Association
  Onion: Dr. Andrew Jones of the Women’s Health Institute

Go, Teri!

‘Nuff said.

Best,
Arabella ♥

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:

• From Somebody Heal Me: Percy Harvin’s Situation Exposes Burden of Chronic Migraines
• From Against the ‘Graine: Setting Goals
• From Headache and Migraine News Blog: 1% Thursday, Think 3D
• From the Alliance for Headache Disorders Advocacy: Migraine and Stigma
• From Migraine Blues: Women with Migraine = Drama Queen
• From Migraine Is a Disease: Migraine Triggers, Treatment, Management: Superb Video

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:

• From Migraine & Other Headache Disorders: Migraines and Suicide.
• From Putting Our Heads Together: Migraines, Suffering, Suicide, and Hope.

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 ♥

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 ♥

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 ♥

I recently told you about Dr. D.  and referred you to a blog where Nancy Bonk had written about her “cure.” (See Dr. D. and His Migraine “Cure.”)

This morning, I notice that Dr. D. has found Nancy’s blog and posted a comment. In that comment, she claims that the reason people keep suffering from “headaches” is “because they were not evaluated properly.”  She also scolds Nancy for being sarcastic.

Seriously?! Instead of scolding about sarcasm, she should be glad Nancy didn’t really cut loose on her.

We have a chance now to speak to Dr. D. and what she says about Migraines. On her blog, she doesn’t accept all comments. I know of some people who posted comments that were never published. Teri Robert posted a comment after that and ended it by saying, “I know that you’ve declined to post other comments. Be brave and truthful, and post this one, please.” She postsed her comment, but of course she used it too. She replied to her, and parts of her reply are down-right insulting to Migraineurs. Here’s part of her reply to Teri:

From that I have learned that people stop trying and keep on suffering once they are told they have a “genetic” problem. In fact many cases of migraines are not genetic at all. I believe if we stop feeding people with the word “genetic” and keep on telling them there is no cure and there is nothing they can do, we will end up with a much healthier and happier population. I wish I can contribute to it.

What? “People stop trying and keep on suffering once they are told they have a “genetic” problem? She’s so full of it! And, what would she have doctors do? Lie to us? I, for one, question what she’s learned if that’s what she got from it.

Instead of continuing my rant, I’m going to ask you to do something. PLEASE go to the comments on Nancy’s blog and reply to Dr. D. Tell her that we do NOT stop trying and anything else you want to say to her.

Will you do that? I hope so. Go to Doubtful “Cure” for Migraines Forever and click the Reply button under Dr. D.’s comment.

Best,
Arabella ♥

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 ♥

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 ♥

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 ♥

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 ♥

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 ♥