A couple of days ago, I came across a link to a wonderful podcast with my friend and colleague Dr. Robert Shapiro talking about Migraine. For those of you who aren't familiar with Dr. Shapiro, you're in for a treat with this podcast. In addition to his credentials listed on the Relief site, Dr. Shapiro is a UCNS certified Migraine and Headache specialist and a herculean advocate. He's one of the founders of the Alliance for Headache Disorders Advocacy and continues to be a leader within the organization. I've honestly never seen anyone who could take journal articles, reports, and other materials and analyze them as well as he does. He makes all the mind-numbing statistics make sense!
Robert Shapiro, MD, PhD, is Professor of Neurological Sciences at the University of Vermont College of Medicine, where he is Director of the Division of Headache Medicine. Dr. Shapiro is well known for his work in the migraine field, and in this RELIEF podcast he discusses the problem of migraine, what causes it and how to treat it, and his advocacy work aiming to raise awareness of the condition.
Happy 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.
So, 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.
Yesterday, a friend brought my attention to a Tweet about a "Real Migraine Cure." Here's a screenshot of it:
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.
Migraine 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:
For 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.
I've designed some limited edition Migraine awareness shirts and a mug available now through TeeSpring. The goal of this campaign is to raise awareness, not$$, so I've set the prices at the lowest allowable by Teespring:
The Hanes tagless short-sleeved teeshirt is $14.25.
The Gildan 8 oz. heavy blend hoddie is $23.99
The Gildan 6.1 oz. long-sleeved tee is $16.99
The mug is $9.99.
Items ordered will be printed and shipped when the campaign expires on Tuesday, October 25. They will be shipped directly to you from TeeSpring and should arrive in four to seven business days.
These items would make super holiday gifts, and this design won't be sold again.
Although I've set the prices on these items as low as I can, there will be a bit of residual profit coming my way - maybe $20. Regardless of what the amount is, I will donate it to the American Migraine Foundation.
I hope you'll consider using these items to raise Migraine awareness!
As I was reading posts in a Facebook Migraine group yesterday, I came across a post from a woman who was talking about feeling guilty when she's too sick with a Migraine to get out of bed and do things with her son. Her post certainly resonated with me because I too have felt that guilt about being unable to get out of bed and do things with my family. There have been times when we visited our children and grandchildren, who no longer live in our area, and I've laid in my hotel room bed crying - not from physical pain, but from the guilt and emotional pain.
There's a related issue here too. Our kids can be frightened by our Migraines, and they can feel a form of guilt themselves because they want to help us, but don't know how to help.
After thinking about these issues for a while, I thought I'd offer some suggestions that come from years of living with Migraine and times when I looked for solutions:
Find ways for children to help.Finding little ways for our kids to help us during a Migraine attack can help ease their feelings of being powerless. Depending on their ages, there are a variety of ways kids can help us:
Older kids can help with younger ones.
Older children can also help if errands need to be run or prescriptions need to be picked up.
Children can help by bringing us things such as a fresh cold pack, tissues, something to drink, etc.
Children who are old enough to read can help us take our minds off our Migraines by softly reading to us.
We can turn the tables a bit, and ask kids to help by softly telling us a story.
Find quiet activities that kids can do while staying close.Our Migraines are less frightening and disquieting to our kids when they can see and be near us. For younger kids, it can be helpful to keep a box or bag of things handy. Here are some suggestions:
Jigsaw puzzles.Get two pieces of sturdy plastic, cardboard, or wood for kids to use as a platform for jigsaw puzzles that are large enough to need more than one session to complete. Between sessions, the platform piece can be covered with the second piece and stored for the next session.
Puzzle books.Books of crossword and other types of puzzles can keep some kids occupied for significant periods of time.
Coloring books.With the current trend for adult coloring books, this can be an activity for kids in a wide range of ages. Keeping a "special" box of crayons, colored pencils, or markers to use during these sessions can make it more fun.
Writing stories or poems.Once children are old enough to read and write, writing can keep them occupied and encourage creativity. There's a huge variety of blank journals available that can give them a special place for their writings.
Teach kids about Migraine disease.Things that are mysterious and things we don't understand are far more frightening than things we know about. For help talking with children about Migraine, see How to Explain Migraine to Children, an article written at a level that children who are grade-school-age and above can understand. Another reason to teach kids about Migraine is the fact that they may inherit the disease. If Migraine is present in one side of the family, children have a 50% chance of inheriting it. That increases to 75% if Migraine is present in both sides of the family.
The bottom line:
The guilt we feel about not being able to do the things we want to do with and for our families is entirely natural, but it's a negative expenditure of emotional energy - energy that's best spent in positive ways.
Instead of letting Migraine win and beating ourselves up with the guilt, let's find ways that work to help our children work their way through their own guilt and fears, help us through our Migraines, have activities that can keep them engaged and close to us when we have a Migraine, and help them learn about Migraine. These things can be good for both our children and for us. Migraine truly is a family affair. It impacts the entire family. By dumping the guilt and employing creative planning, we can ensure that the impact isn't always totally negative.
Dr. Dave Hnida is quite right in what he says below about the headache of a Migraine attack sometimes being one of the least severe symptoms and Migraine attacks sometimes occurring with no headache.
The problem is his use of the term "complex Migraine." The gold standard for diagnosing and classifying Migraine and other Headache disorders is the International Headache Society's International Classification of Headache Disorders, currently in its third edition (ICHD-3). Use of the ICHD-3 keeps everyone "on the same page" and using the same diagnoses. This is essential when a patient needs to see someone other than their own doctor because it allows the patient to tell health care professionals their specific Migraine or Headache diagnosis.
"Complex Migraine" is not a recognized ICHD-3 diagnosis, but it's often used as a descriptive term. The problem with that is that it's used differently by different people — Dr. Hnida's description, although good, doesn't necessarily match how other people, including doctors, describe it.
The term “complex migraine” describes something that can scare us doctors like few other conditions.
Now, your first thought might that we are simply talking about a severe or unusual headache, after all, the word “migraine” is in there. But headache can be one of the least severe symptoms, and in fact, may not even be present at all.
But what unnerves doctors—and obviously the patient—are the other symptoms.
If you have some time on Saturday, there's an easy way everyone can help us raise awareness with these events - Tweeting and reTweeting! People at these events are going to be Tweeting, some with photos of the events, and other people reTweeting is a great way to raise awareness for Migraine and other Headache disorders as well as the two organizations.