Sunday Thoughts on Living with Migraine: I Need Your Advice

SundayThoughtsGood afternoon, and happy Sunday to my extended Migraine and Headache family!

June will soon be upon us, and it's Migraine and Headache Awareness Month. As I've been making plans for Awareness Month, I've been thinking about what we did in previous years, and find myself a bit stumped. So, today, I'm turning to you for some advice.

Every year, several organizations and individual advocates devise Awareness Month activities hoping to engage as many Migraine and Headache patients as possible. The purpose of these activities is to raise awareness of Headache disorders in the general public and reduce the social stigma associated with them. These activities include:

  • printing an awareness sign, taking a picture of yourself with it, and posting it to social media
  • the sale of awareness month shirts and other items
  • daily prompts for writing blogs and posting to social media outlets such as Facebook and Twitter.

The problem is the low rate of participation in these activities, and this is where I turn to you for advice. Would you pretty please, with a cherry on top, either post a comment below or use the email button in the right column of this blog to share your thoughts with me? I'd love to hear your thoughts on why Awareness Month participation is low. Do we need different or additional activities? If so, what might they be? Do you have ideas about why participation is low?

I'd be remiss if I didn't take this opportunity to thank everyone who has participated in Awareness Month activities in previous years, so thank you! Together, maybe we can find ways to get more people involved this year and in the future.

Live well,

 because a migraine is NOT "just a headache"
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Matt Harvey Owes People with Migraine an Apology

DiseaseNotExcuseIn case you haven't seen this news, New York Mets player Matt Harvey called in sick from Saturday's game, saying he couldn't play because he had a Migraine.

The events leading up to his calling in sick aren't totally clear, but what is clear is that he was out past curfew Friday night, drinking champagne, vodka, and tequila. Saturday morning, he was out playing golf. For missing Saturday's game, Harvey was suspended for three games, which cost him $84,016.

One report quotes a friend of Harvey's as saying that he did have a Migraine Saturday afternoon, but Harvey didn't mention having one when he publicly apologized for his behavior yesterday. Harvey apologized repeatedly and profusely to his team mates and to Mets fans.

Did Harvey have a Migraine Saturday? I don't know, but if he did, I have to wonder if it was triggered by the partying Friday night, a lack of sleep, and/or the golfing Saturday morning. What I do know is that Mets rules include a curfew the night before a game, and he definitely broke that. I also know that a responsible person with Migraine disease would have been at home getting plenty of rest Friday night and taking care of himself in order to avoid a Migraine and be prepared for the game.

While Harvey apologized to his team mates and Mets fans yesterday, he left out another group of people to whom he should have apologized — people living with Migraine. We live with more than enough social stigma and more than enough doubt when one of us needs to miss work because of a Migraine. Harvey's very public behavior reflects badly on all of us. It's a very public example of someone who used Migraine as an excuse.

Mr. Harvey, Migraine is a disease, NOT an excuse. You owe us a very big, very public apology.

To all of you reading this who have Twitter accounts, please tweet this post, use the hashtag #Migraine, and tag Mr. Harvey. His Twitter ID is @MattHarvey33.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"
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Enter the Frames of Mind Migraine Art Contest

Frames-of-MindThe American Migraine Foundation and Allergan are collaborating on an exciting new campaign that gives people with Migraine an outlet for their creativity that will be used to raise awareness about Migraine disease.

Frames of Mind is an interactive campaign to promote awareness of the impact that Migraine can have on patients' everyday lives. People living with this often debilitating condition are encouraged to submit original artwork depicting how the symptoms of migraine personally affect them.

Dr. David Dodick, Chairman of the American Migraine Foundation said,

"We are excited to collaborate with Allergan on this eye-opening campaign that we hope will unify the migraine community. While the symptoms of Migraine can occur in a myriad of unique ways, we hope to underscore the common needs of this community and empower patients to better manage their condition, advocate for access to care and appropriate treatment options, and inspire funding for research into the causes and better treatments for Migraine."

People living with Migraine are encouraged to create art submissions that visually depict how the various symptoms of Migraine affect them — both physically and emotionally. Digital, high resolution versions of the original works of art should then be submitted via email to FramesOfMind@toniclc.com, noting the artist's name, location, and contact information.

Select submissions chosen by notable migraine experts will be displayed at the 59th Annual Scientific Meeting of the American Headache Society from June 8 – June 11, 2017 at the Westin Boston Waterfront in Boston and other Migraine-related events throughout the remainder of 2017. Additionally, art submissions will be displayed on the My Chronic Migraine Facebook Page.

David Nicholson, Chief R&D Officer at Allergan, commented:

"Allergan is dedicated to supporting the millions of Americans living with the debilitating effects of Migraine and educating the public about this condition in order to encourage proper diagnosis and treatment. In addition to our focus on advancing research and treatment options, we are committed to offering education and support that will make a true difference in the lives of this patient community."

The timing of this campaign is perfect since the works of art will begin being displayed during Migraine and Headache Awareness Month.

Where does your artistic talent lie? Painting, sketching, sculpting, photography? Whatever talent you have, now's the time to use it to help promote Migraine awareness. Get your submissions in now to FramesOfMind@toniclc.com.

FramesofMind_callforEntries

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"
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Migraine, Spammers, and Twitter - Time to Act

Smiley-thumbs-downI follow the Twitter hashtag for Migraine — #Migraine — so I can keep up with news about Migraine disease, read interesting articles and blog posts, and offer my support to people that Tweet when they have a Migraine. Unfortunately, those of us who follow that hashtag are seeing more and more spam Tweets. The most annoying are those that Tweet links for a Migraine "cure." 

Some of these spammers only Tweet to try to sell us on their "cure." Others think they're being clever. They'll Tweet a few times to share facts about Migraine, then Tweet their "cure" Tweet.

Let's be very clear here. Migraine is a genetic neurological disease for which, at this time, there is NO CURE. Spammers and charlatans are Tweeting to get us to pay for eBooks, supplements, instructions for breathing exercises, and more. And here's a truly sad point — Some people are so very desperate for relief that they'll pay to try these so-called "cures." If these spammers weren't profiting from their Tweets, they'd stop.

Even if these spammers were willing to spend the money to advertise, laws about truth in advertising would block their way. But, they can continue with their misleading and predatory Tweets because Twitter doesn't stop them. There's one particular Migraine cure spammer on Twitter whose Tweets I have reported hundreds of times, to no avail.

I'm infuriated that these spammers continue to prey on my extended Migraine and Headache family, so I've decided to take action. I've set up a petition on Change.org addressed to Jack Dorsey (@jack), the CEO of Twitter, and Anthony Noto (@anthonynoto), the COO of Twitter.

Today, I'm asking everyone who reads this two do two things, each of which takes just a few seconds of your time:

  1. Please sign the petition. There's a box below to do that.
  2. Please share the link to this post or the link to the petition with everyone you can think of.
       
 

I hope you'll join me. It's going to take many, many signatures on the petition to get the attention of Twitter executives, and I can't get them by myself. Please, please, join me?

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Sunday Thoughts on Living with Migraine – Show Me the Science

Fall-SundayHappy Sunday to my extended Migraine and Headache family. I hope your heads are being kind to you today and that you're having as good a day as possible.

Yesterday, I published a review of an eBook that a friend had brought to my attention because the author claimed to have cured her Migraines and was offering advice to others as a possible cure for theirs. To her credit, she did say, "I can’t guarantee your migraines will be cured, because everyone’s migraines are different," but the claim of her cure was made. (See 5 Steps to Solving Your Migraine Mystery - A Review.)

Because of that review, I received a message on Facebook, asking me to review another book about Migraine. In that book, the author claims to have discovered the cause of Migraine. I don't put much stock in that statement because scientists have theories, but the best of them say that the cause is still not definitively identified or fully understood.

Over the years, so many people have told me that they have the cure for Migraine disease, that they've discovered the true cause, or made other claims such as having developed miraculous treatments. I couldn't even begin to count how many people have come to me with their claims or how many other claims I've come across because other people pointed them out or I came across them myself.

Medical-scienceSo, how do we determine what claims to consider and which ones to dismiss? This is where we need to employ simple logic. Some people would say, "Show me the money!" I say, "Show me the science!" I want to see science-based evidence if someone tells me they have an effective treatment. Testimonials aren't going to convince me. Nothing works for everyone, and the placebo rate in clinical trials is often around 30%. So, show me published data from a double-blind, placebo-controlled clinical trial that shows the treatment to be more effective than placebo.

Some of the people who have come to me with their claims have a second claim — a claim that the world doesn't know about their discovery because pharmaceutical companies are conspiring to keep their discoveries hidden to protect their profits. Some have even said that doctors who specialize in the treatment of Migraine and other Headache disorders are conspiring to keep their discoveries hidden because they would have any patients if the discoveries came to light.

Again, let's employ some basic logic. Let's just say there are conspiracies to keep these discoveries hidden. In today's world of communication, technology, and social media, it wouldn't work. There are any number of journalists who would jump at such a story — and a chance at a Pulitzer for reporting such a heinous conspiracy. The world would know in pretty much no time at all.

There are many possible motivations for someone to claim they have the cure to Migraine disease, and not all of them are villainous. Some people write that they've cured their own Migraines. Science says there's no cure yet for this genetic neurological disease. BUT, trigger identification and management can be very effective for some people. When you read some of these stories, you notice that many of them talk about a lot of lifestyle changes — avoiding certain foods, sleep patterns, proper hydration, etc. These all represent avoidable Migraine triggers. Thus, some people who offer their "cure" advice to other people may have eliminated their triggers to the point of having very, very few Migraines. They may truly believe they're "cured."

In any case, using logic and looking for the science can help us sort our way through many of the claims that are being made in the Migraine community.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

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5 Steps to Solving Your Migraine Mystery - A Review

5-Steps-0-StarsYesterday, a friend brought my attention to a Tweet about a "Real Migraine Cure." Here's a screenshot of it:

Real-Migraine-Cure-Tweet

One of the problems with self-publishing is that anyone can publish anything they want without any checks and balances. In self-publishing, there's no publishing house, editor, fact checker, or anyone else to hold people accountable. Still, there are some self-published books and eBooks that are worth a read. Even when the titles are overblown, sometimes there are tidbits of decent information in them.

So, I followed the link and downloaded 5 Steps to Solving Your Migraine Mystery by Dawn Gregory and started reading it. I'm sorry to say that I found no redeeming sections in this book. The outrageous statements made about "curing" Migraine disease far outweighed everything else in the eBook.

Here are some of the most egregious statements in this eBook:

  • Kick your drug habit: If you are one of the lucky few who have finally found a medication that manages your migraines, giving it up is going to seem nearly impossible. But if you want to fully restore your health, you are going to have to do it eventually.
  • Medication is a poison.
  • It is your choice, but you will never be truly healthy while you are using medication. That’s not a conjecture, it’s a definition. Healthy people don’t need medication.
  • Curing migraines is possible, if you are pro-­active, knowledgeable, and determined to make it happen.

Gregory does say, "I can’t guarantee your migraines will be cured, because everyone’s migraines are different," but even that statement isn't redeeming. At this time, there simply is no cure for Migraine disease. That's what evidence-based science tells us, and I put my trust in evidence-based science.

Would you love to solve your Migraine mystery? Would you love to cure your Migraines and be rid of Migraine disease? I certainly would! But we live in the real world where Migraine is a genetic neurological disease for which there is no cure yet. Consider this — Based on today's statistics at www.census.gov, nearly 41 million people have Migraine just in the United States. Migraine is a leading cause of disability, lowered quality of live, lost productivity, and more. If someone had a true cure for Migraine, it would be in headlines all over the world, and the person who discovered it would be receiving a Nobel prize for Medicine.

In the biography on her web site, Gregory says that she had Migraines for 18 years and "created the Real Migraine Cure to share what I’ve learned about migraines and help you cure your migraines once and for all." At the same time, she has a blog where she continues to blog about topics including new Migraine treatments in development. She also provides links to web sites and blogs, including this one. All in all, I don't understand her insistence that Migraine can be cured. Nor do I understand making the blanket statement, "Medication is poison."

This eBook was free, but she does have a Migraine book for sale on Amazon. In any case, she doesn't seem to be trying to make a big profit from the suffering of others as some people do. Perhaps she's just misguided. As far as 5 Steps to Solving Your Migraine Mystery goes, however, I must give it 0 out of 5 stars. It's just not worth reading. In fact, it has the potential to add to the social stigma of Migraine because of its incorrect claims of a possible cure.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

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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.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

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