Good morning, and happy Sunday to my Migraine and Headache family. As always, I wish we could have a day when nobody in our community has a Migraine or Headache, but since that's just a beautiful wish, I'll hope that the day is treating all of you as well as possible.
All of the months leading up to the recent Presidential election were... well, I'd say difficult, but that's an understatement. I can't think of a word that adequately describes it. By the time election day arrived, I'm sure many of us with Migraine were impacted by the stress. I know I certainly was. Although stress itself isn't a Migraine trigger for me, there are other triggers I have to watch out for during stressful times - dehydration, skipping meals, messed up sleep.
I first voted in the Presidential election of 1972, the year I turned 18, and the first time 18 year old citizens could vote. I was excited about it because I love my country, and I see voting as both a privilege and a responsibility.
In the years since then, I've never seen anything as shameful as the rhetoric spewed forth during this last election. Never. Although still proud of our country, I was truly ashamed of many people. The issues were nearly lost in the vitriolic stream of name-calling and worse. It didn't stop with the candidates, and it didn't end with the election.
The FREEDOM OF SPEECH that we enjoy and that allows us to state our views doesn't give us the right to devolve into UNpeaceful protests, property damage, and threats. The election is over, and everyone on both sides should be moving forward and being gracious toward others. Our country and our citizens face many enormous challenges, and we'll only overcome them if we work together.
Anyway, I came across a video yesterday that I think everyone will love. Please note that the song is performed entirely a cappella. Even the snare drum sounds are made by one of the vocalists. Please, sit back, relax, enjoy the song, and remember why you're proud to be an American.
Happy Sunday to my Migraine and Headache family. It's inevitable that some of you have a Migraine or Headache today, but I hope you're having as good a day as possible. 😍
This past week, I had occasion to think quite a bit about people who think of themselves as a victim of Migraine disease. Some even call themselves victims.
Before I go on, let's look at the definition of victim from Dictionary.com:
Victim: "a person who suffers from a destructive or injurious action or agency."
If you consider what we experience during a migraine attack as suffering and consider Migraine disease an injurious agency, I guess a case could be made for calling Migraineurs victims of Migraine disease. However, I truly dislike the connotations of the word "victim," don't like or want to feel like a victim, and don't want to be seen as one by others.
"Victim" is a word I'd just as soon wipe from my vocabulary. A far better word is "victor," which is defined by Dictionary.com as:
"As person who has overcome or defeated an adversary."
Please think about it for a moment. We have a choice. We can choose to let ourselves be victIMs of Migraine disease, or we can choose to be victORs.
When I had my first Migraine 50+ years ago, there weren't many Migraine treatment options, but that has changed dramatically over the years. Today...
We have abortive medications that work to stop the Migrainous process and the symptoms of the Migraine attacks - triptans such as Imitrex (sumatriptan), Maxalt (rizatriptan), Zomig (zolmitriptan), etc.; ergotamines such as DHE and Migranal; and the Midrin equivalent medications. Some of the triptans are now FDA approved for children as young as six.
There are so many preventive treatment options that it would take in excess of 25 years to give each of them a 90-day trial.
There are doctors who specialize in the treatment of Migraine and other Headache disorders.
Anna Eidt is one of my chronic Migraine heroes. She inspires me with her positive and cheerful attitude, her gentle nature, her contagious smile, and her talent.
I was looking through her blog the other day and came across a post entitled A Letter to Anyone Who Feels Less Lovable Because of Migraine. Anna begins the post taking about two things she'd learned:
A couple of years back, I conducted an online survey for people with migraine and their caretakers/partners about managing relationships with migraine in the picture. I learned two things from this survey. The first is that I actually have no idea how to compile and meaningfully interpret the data I collected (I’ll work on that some day). The second is that migraine really puts all relationships to the test, and many people out there are living with partners who blame them for their pain and loss of abilities. As unhealthy and abusive as this may be, some feel/are stuck in these relationships because they are dependent on their partner as their sole caretaker or breadwinner.
This probably shouldn’t have been a surprise, but it was an important reminder of how lucky I am, and how infinitely important it is that people with migraine never stop seeking the support they need...
Anna was the winner in this year's Migraine Moment Film Contest back in June. If you haven't seen her video, please take a few minutes to view it. Note that she also wrote and performed the song that plays throughout the video. She's a very talented lady! See Must-See Migraine Video with a Song to Get Stuck in Your Head.
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!