A Migraine Onion to Excedrin, Novartis, and Their Social Media Team

Migraine-Pearls-OnionsMigraine Pearls are awarded to the "gems" in the Migraine community for valuable, shining content and support... current and accurate information... things of value. Migraine Onions, on the other hand, are awarded to "stinky" things in the Migraine community — old or inaccurate content... things that perpetuate misconceptions and stigma rather than fighting them... worthless products, eBooks, etc... and more.

While the makers of Excedrin and their advertising agency have seemed to be trying to connect with people with Migraine and other headache disorders, they've also been really messing up.

Today, they've really gone way over the top on Twitter with what I'm going to call "predatory Tweets." They're not clever. They're not cute. They're predatory. Here are two of their Tweets:

Excedrin1

Excedrin2

Onion100For these Tweets, I hereby award Excedrin, their social media team, and Novartis Consumer Health a Migraine Onion!

At this critical time in the United States... during the dirtiest, nastiest political campaign every... when our attention should be on solving the horrible issues facing us as a nation...

During this time, Excedrin's social media team posts these predatory Tweets in an attempt to boost their sales and profit from the turmoil of the Presidential campaign. These stinky Tweets also serve to perpetuate the social stigma associated with Migraine and other Headache disorders. I could go on and on, but it all comes down to:

Shame on everyone at Excedrin and Novartis Consumer Health responsible for these Tweets!

Yes, I realize that the opinion of one person and a boycott by one person isn't going to hurt Novartis Consumer Health, the makers of Excedrin, but that's exactly what I'm going to be doing. From now on, if I need or want something made by Novartis — ANY of their divisions — I'll be looking for a substitute made by another company.

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PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Migraine Pearls All Around to the Jefferson Headache Center

Migraine-Pearls-OnionsIf you're not familiar with this series, you may be wondering what pearls and onions have to do with Migraine and other Headache disorders. I'll explain.

Migraine Pearls are awarded to the "gems" in the Migraine community for valuable, shining patient care... educational content and support... current and accurate information... things of value. Migraine Onions, on the other hand, are awarded to "stinky" things in the Migraine community — old or inaccurate content... things that perpetuate misconceptions and stigma rather than fighting them... worthless products, eBooks, etc... and more.

Patty Haughton emailed me with a nomination that led to today's Migraine Pearls, so it's fitting that I quote Patty about why Dr. William Young, Jen Cho, and the entire team at the Jefferson Headache Center are hereby awarded Migraine Pearls. Patty told me:

I currently live in Delaware, 30 miles from Jefferson. I moved far away, twice, and commuted by plane and train to see Dr.Young. He has been irreplaceable and years ahead, with regard to knowledge and treatment of migraine, of any other "headache specialist " I have seen. It is Dr. Young's relationship with his patients that truly sets him apart from others in the field. He always has time for another question and never pretends to have all of the answers. I feel as if we are team addressing the migraines. He involves me in every decision.

I would like to thank Carla, Margaret, and Diane, by name, and then mention and all the support staff at Jefferson Headache Center. Carla, Margaret and Diane always greet me by name in the waiting room, even if I have not been assigned to them. They, Dr. Young and Jenn Cho, treat the whole me, not just the headache. They ask about my family and my life and remember details from visit to visit. Again, I feel a member of a team rather than just a recipient of care.

I hear patients in the waiting room who are new to the Center , mumble about the long wait times. I have never minded waiting, because when it is my turn to be seen, the visit is relaxed and anything but rushed. I have also come to the Center with somewhat urgent headache needs, and I have been seen quickly.

I didn't mention in my last email that Bill Young is much more than his patients' physician. He spends countless hours, as do you, advocating  and lobbying for research funding for headache. His efforts in outreach for awareness of and education about headache is evidenced the tremendous increase in Headache on the Hill participation.

In summary, am nominating Bill Young, Jenn Cho and their entire headache team at Jefferson Headache Center for a Pearl.

Patty's nomination struck a chord with me. Dr. Young was the first Migraine and Headache specialist I saw, and I'll be forever grateful for his knowledge, help, and compassion. One of the first things he said to me at my first appointment was, "I won't give up on you if you don't give up on me." Neither of us gave up, and with his help, we reduced my Migraine frequency from 25 to 30 days a month to just one or two. That didn't last forever, but when things changed and my Migraine frequency increased, I was far better able to cope while looking for new treatment options because of all Dr. Young had taught me.

Pearl100Congratulations to Dr. Young, Jen Cho, Carla, Margaret, and Diane, and the entire staff of the Jefferson Headache Center! You're true gems in the Migraine community, and greatly deserving of Pearls!

Patty, thank you for nominating these wonderful people!

Do you have someone you'd like to nominate for a Migraine Pearl or a Migraine Onion? If you do, I'd love to hear from you. You can email me by clicking the "Email Me" button in the right column of this blog.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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A Migraine Onion to Bel Marra Health

Migraine-Pearls-OnionsMigraine Pearls are awarded to the "gems" in the Migraine community for valuable, shining content and support... current and accurate information... things of value. Migraine Onions, on the other hand, are awarded to "stinky" things in the Migraine community — old or inaccurate content... things that perpetuate misconceptions and stigma rather than fighting them... worthless products, eBooks, etc... and more.

With the Internet, we have access to more information about Migraine than every before. Unfortunately, there's altogether too much inaccurate information about Migraine published online.

Today, I'm awarding a Migraine Onion to Bel Marra Health, a site they say they "established in 2004 as a solution to the community’s pressing health issues." More specifically, the Onion goes to Bel Marra and one of their "medical writers," Emily Lunardo, for the article, "Ocular migraine (retinal migraine) causes, symptoms, and treatment."

What's so bad about the article? Let me list some of the problems:

  • Every field of medicine has a method of standardizing diagnoses. That keeps things organized and let's people make sense of things. In the field of "headache medicine," the International Headache Society's International Classification of Headache Disorders (ICHD) is the gold standard. It's now in its third edition (ICHD-3).
  • The diagnosis of "ocular Migraine" doesn't exist in ICHD-3.
  • Retinal Migraine is a recognized diagnosis in ICHD-3, BUT the Bel Marra article is horribly inaccurate in its description of retinal Migraine and its symptoms.
    • Bel Marra said, "Ocular migraine (retinal migraine) is a temporary disturbance of vision, affecting one or both eyes." ICHD-3 says, "Aura consisting of fully reversible monocular (in one eye) positive and/or negative visual phenomena (e.g. scintillations, scotomata or blindness)..."
    • Bel Marra said, "Generally, ocular migraines will resolve on their own within 30 minutes without medications." This is inaccurate. The aura symptoms last five to 60 minutes.
    • Bel Marra said, "If an episode of ocular migraine is followed by a headache experienced on one side of the head, this is known as migraine with aura, and the visual disturbances are then known as the aura, rather than ocular migraine." Again, inaccurate. Retinal Migraine can and does occur with headache. The ICHD-3 says, "the aura is accompanied, or followed within 60 minutes, by headache."

Onion100I could go on and list more errors in the article, but I'm not going to. The article is so flawed by inaccuracies that it truly should just be avoided. The article stinks.

This kind of misinformation being published on line is absurd. There's no reason for it. Ms. Lunardo is supposed to be a medical writer. I'd suggest that she take whatever she was paid for this and invest it in some educational resources. Of course, the very resource that could have helped with the accuracy of this piece, the ICHD-3, is available ONLINE AND FREE! There's just no excuse for this shoddy piece.

In addition to awarding this onion, I call on Bel Marra Health to either remove this article from their web site or have it corrected.

If you'd like accurate, physician reviewed information about retinal Migraine, see Retinal Migraine - The Basics.

Do you have someone you'd like to nominate for a Migraine Pearl or a Migraine Onion? If you do, I'd love to hear from you. You can email me by clicking the "Email Me" button in the right column of this blog.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Migraine Pearls to Dr. Todd Schwedt and Dr. David Dodick

Migraine-Pearls-OnionsMigraine Pearls are awarded to the "gems" in the Migraine community for valuable, shining content and support... current and accurate information... things of value. Migraine Onions, on the other hand, are awarded to "stinky" things in the Migraine community — old or inaccurate content... things that perpetuate misconceptions and stigma rather than fighting them... worthless products, eBooks, etc... and more.

Today, I want to award some Migraine Pearls and shine a spotlight on Migraine specialists who also engage in Migraine research. It's been my pleasure and honor to meet and get to know some of these doctors over the years, and their dedication is amazing, inspiring, and something for which I'll be eternally grateful. 

These doctors not only treat patients, but go a step further toward helping to address the problems that their patients face by conducting research — AND they must often be successful in finding the funding to support that research before they can conduct it. Some of these ladies and gentlemen have dedicated their entire careers to doing everything they can to improve our lives. Adding research to a doctor's already busy schedule can also mean that they sacrifice family and personal time to spend more time working.

Dr. Todd Schwedt and Dr. David Dodick — both of whom practice "Headache medicine" at the Mayo Clinic's Headache Center in Scottsdale, Arizona — are two such doctors who have recently sought and received funding, and are about to embark on an important study. One of the biggest problems facing some chronic Migraine patients and the doctors who treat them is which treatment strategy to choose for patients who have both chronic Migraine and medication overuse Headache. There are two primary strategies at present, but neither proof nor consensus indicate which strategy is more effective and efficient and less difficult and stressful on patients. Dr. Schwedt put together a comprehensive grant proposal and applied for funding from the Patient Centered Outcomes Research Institute (PCORI). PCORI approved the application and is funding a five-year study titled Determining the Optimal Treatment Strategy for Patients Who Have Chronic Migraine with Medication Overuse with a grant just over $7.7 million.

So, for all they do — for their own patients and everyone with Migraine disease — I award Migraine Pearls to Dr. Todd Schwedt and Dr. David Dodick.

To Dr. Schwedt and Dr. Dodick, thank you so very much!

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Nominations for Migraine Pearls and Onions Open

Migraine-Pearls-OnionsHave you seen a truly great article or blog post about Migraine? Do you have a hero in the Migraine community — someone you admire for their strength or helping others?

On the other end of the spectrum, have you come across a horribly incorrect article or blog post? Have you come across a web site full of misinformation or one that's only there to sell a questionable product or service?

I think you get the idea. Migraine Pearls are shiny and beautiful. Migraine Onions are nasty and stinky. Do you have a nomination for a Migraine Pearl or Migraine Onion? If so, please share it with me. You can leave a comment at the bottom of this post, or you can click on the email button in the right column to email your nomination to me.

Let's work together to acknowledge great content or people with a Pearl or let others know about sites and other content that can't be trusted with an Onion. We need to work together for many reasons, not the least of which is that it can be hard to distinguish accurate content from inaccurate content, especially for those who are in pain while searching and for those who are new to learning about Migraine disease.

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PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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A Migraine Onion to Woman's World Magazine

PearlsOrOnions125It's been a while since I did a Migraine Pearl or Migraine Onion post, so maybe it's about time. Migraine Pearls are awarded to people and organizations who get it right and help people living with Migraine disease. Migraine Onions go go people and organizations who make living with Migraine more difficult by publishing incorrect information, perpetuating myths and stigma, etc.

Today, I'm awarding a Migraine Onion to Woman's World Magazine. On July 19, 2016, they published an article by Debbie Strong, How to Cure a Migraine in 7 Easy Steps. I came across it through a Google News Alert, which means it was probably well read. There were a couple of issues with this article — calling Migraines "headaches" and suggesting to readers that they ask their doctors about Zecuity. The problem with asking doctors about Zecuity is that it was voluntarily removed from the market by the manufacturer for safety reasons on June 16, a bit more than a month before the article was published.

When I read the article, I emailed Woman's World so they could correct the article. No, they might not agree not to call Migraines "headaches," but surely (I thought), they'd remove the recommendation to talk to doctors about Zecuity. Here's a copy of the email I sent on July 23, 2016:

Good afternoon,
 
I’m writing to you about Debbie Strong’s article, “How to Cure a Migraine in 7 Easy Steps.” (http://www.womansworld.com/posts/cure-a-migraine-108453)
 
A couple of points:
  • Migraines really shouldn’t be referred to as headaches. A headache alone is insufficient for a diagnosis of Migraine. There must be other accompanying symptoms. If there’s a headache during a Migraine attack, it’s only one symptom. Migraine attacks can and do occur with no headache.
  • Zecuity was voluntarily pulled from the market by Teva on June 16 for safety reasons. See http://www.healthcentral.com/migraine/c/123/180351/zecuity-migraine-voluntarily.
Thank you.
 
I truly thought they'd at least remove the Zecuity recommendation, even if they didn't reply to me, but they didn't. The article remains as it was originally published. So, this article really stinks. Phew! It deserves an onion.
 
Should anyone from Woman's World see this post — Do you not feel you have a responsibility to your readers? Shouldn't your content be accurate? Why on earth would you not remove the Zecuity recommendation.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Migraine Pearls or Onions? 10/23/12

PearlsOrOnions125An amazing amount of great information about Migraine and other headache disorders can be found on the Internet. Unfortunately, an amazing amoung of MISinformation can be found as well.

The information we find online can be bright, polished, and valuable — like a pearl — or it can be... well, rough and stinky — like an onion.

This feature of my blog, "Migraine Pearls or Onions?" highlights both the gleaming "Migraine Pearls" I come across and the malodorous "Migraine Onions."

Pearl100Today's Pearl goes to The Migraine Project . Spearheaded by award-winning filmmakers Susanna Styron and Jacki Ochs, The Migraine Project is developing Out of My Head, a feature documentary film that takes a good, hard, real look at Migraine and living with it. Thsi important film is meant to inspire greater compassion for Migraineurs and increased support for research within the scientific community.

They also do some great Tweeing, and through Twitter, brought today's Onion to my attention!

Onion100Today's Onion goes to The Florida Agenda and Andy Kress for the article Migraine No More. At the end of the article, Kress's credentials are listed as certified fitness trainer, yoga instructor, and nutritional counselor. He lists no sources for his information, and I see nothing on the site that would indicate that the content is physician reviewed.

This is undoubtedly one of the most ill-informed articles about Migraine that I have ever seen. It's just plain shameful that such blatant misinformation has been published.

Not only is there a great deal of misinformation in this article, much of it is of the "blame-the-patient" variety that not only adds to the miasma of bad information, but also adds to the stigma surrounding Migraine.

Allow me to quote and rebut some of the more egregious sections:

  • "...being under the harsh grip of this painful tension headache..."
    Make up your mind, already. Are you talking about Migraines or tension-type headaches? Migraines are most definitely not tension headaches. Tension-type headache is an entirely different headache disorder.
  • "... does not have to be so for intelligent, methodical, and perfection-minded people who suffer from it."
    So, what's he saying? That only this type of person has Migraines, or that other people have to continue suffering?
  • "Ironically, migraine sufferers often unknowingly bring this problem on themselves through their busy daily lifestyles. Most cases are caused by low blood sugar, infection, allergies, over-intake of certain drugs and chemicals, over working, low energy from loss of appetite, improper sleep and over-consumption of tobacco, alcohol, and sex."
    First of all, many of us DO know our triggers and avoid them assiduously. However, the author failed to mention many triggers that are unavoidable such as barometric pressure changes, hormonal fluctuations, and others.
  • "Having a balanced diet along with a balanced lifestyle is a sure-fire way to eliminate the unbearable symptoms that migraines can cause."
    If only! There are many, many Migraineurs who work diligently to have a very balanced diet and as balanced a lifestyle as Migraine permits, but that has NOT eliminated their "unbearable symptoms." This is oversimplification at its worst.

I could go on, but I'll spare you. You get the idea by now. My plea to Mr. Kress is that he either not write about Migraine or learn a bit about it before he writes more. If I were a betting person, I'd bet that he wouldn't appreciate someone publishing articles full of misinformation about fitness, yoga, or nutrition.

There is a place to post comments about this article if you're so inclined. Maybe a few comments would encourage them to correct the article. Who knows? It's happened before on other sites.

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Migraine Pearls or Onions? 7/26/12

PearlsOrOnions125How much of your Migraine information do you get online? There's a prodigious amount of it, but that doesn't mean it's all accurate and unbiased. Online information can be bright, polished, and valuable - like a pearl - or it can be... well, rough and stinky - like an onion.

This feature, "Migraine Pearls or Onions?" highlights both the gleaming Migraine pearls I come acorss and the malodorous "Migraine Onions."

Pearl100Today's Pearl goes to ACHE, the American Headache Society (AHS) Committee for Headache Education, for the Fred Sheftell, MD, Education Center. The goal of the Center is to provide patient education materials. The Center has grown significantly over the last year, adding a large amount of new content and instituting ACHE Tuesdays. On ACHE Tuesday, a new piece of patient education content is spotlighted, which not only brings attention to that piece of content, but also to the importance of patient education and the validation of educated patients. As more and more patients come to the realization that we can achieve better health and better health care by being better educated about our health, it's significant to see a professional society such as the AHS recognizing this as well.

Onion100Today's Onion goes to Curt Hendrix and the MigreLief blog for the blog entry Alice in Wonderland Type Migraines. Why? Because some of it, beginning with the title, is inaccurate.

There's no such diagnosis as Alice in Wonderland Type Migraine. Alice in Wonderland Syndrome (AIWS) is a type of Migraine Aura. People who experience AIWS have one of the forms of Migraine with Aura.

In his opening, Hendrix says:

Many of you who either suffer from chronic migraine headaches or have a close friend or loved one, who has them are familiar with the visual disturbances that can occur prior to the migraine pain, known as auras.

Another inaccuracy. You don't have to have chronic Migraine to experience aura. People with episodic Migraine can experience aura also. And I'm not even going to get into the inaccuracy of referring to Migraines as headaches.

Hendrix developed MigreLief, a dietary supplement for Migraine prevention. I know some people for whom it works pretty well; that's not what this is about. What this is about is if Hendrix is going to publish information on the Internet, targeted at Migraineurs, from whom he wants to make money, it should be accurate. I attempted to post a comment to that blog on July 15. It's still not posted, but awaiting moderation. Somehow, I doubt it will ever be approved.

To Mr. Hendrix, I would say, "Get it right or don't write it in the first place."

We need to learn about our Migraines and our treatments, and online information can be a valuable source. BUT, we need to take care that the information we choose is accurate and unbiased. Consider the source for the information you're reading, when it was written, and whether the author cites the sources for his or her information.

Do you have nominations for Migraine Pearls or Onions? If so, please post a comment!

Live well,

PurpleRibbonTiny
 

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Last updated July 26, 2012.