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Posts Tagged ‘Teri Robert’

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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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

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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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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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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

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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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