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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

Migraine Truth This Week

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

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

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

Good morning, Migraine sufferers and other readers!

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

“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

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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