Earlier this week, I wrote about living with Migraine and being positive in 2017. Fortuitously, I came across a wonderful article from The New York Times this afternoon. Here's a brief excerpt:
Here’s a New Year’s challenge for the mind: Make this the year that you quiet all those negative thoughts swirling around your brain.
All humans have a tendency to be a bit more like Eeyore than Tigger, to ruminate more on bad experiences than positive ones. It’s an evolutionary adaptation that helps us avoid danger and react quickly in a crisis.
But constant negativity can also get in the way of happiness, add to our stress and worry level and ultimately damage our health. And some people are more prone to negative thinking than others...
“We were built to overlearn from negative experiences, but under learn from positive ones,” said Rick Hanson, a psychologist and senior fellow at the Greater Good Science Center at the University of California, Berkeley.
But with practice you can learn to disrupt and tame negative cycles.
There is great power in how we think. Thinking positively or negatively can shape every area of our lives, making things better or worse.
Yes, we still need more research to fully understand Migraine; and, yes, we need better treatments. The good news is that there are four Migraine medications in clinical trials now that look very promising. These medications will bring an enormous positive change to the treatment of Migraine. In the meantime, we can help ourselves tremendously by remaining hopeful and positive.
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.
Anyone interested in new Migraine treatments will be interested in this article...
It often starts with the aura.
Zig-zagging lines come into view, everyday light becomes searingly bright, and vision starts to slip. These are signals that a debilitating migraine is on its way.
“It’s like you’re possessed,” said Lorie Novak, who has suffered from chronic migraines since childhood. “I almost feel separate from my body, like it’s just this painful shell around me that’s not me.”
Novak, now in her 60s, is one of the roughly 35 million Americans who suffer from migraines. There are few effective treatments, and no new drugs have been developed since the early 1990s
Sigh. This is a perfect example of why we shouldn't trust everything we read on the Internet. This salt "cure" has been circulating online for some time now, and it's just so wrong. In fact, it has the potential to be harmful to some people. In this case, they reference lime juice and salt, but whether lime or lemon juice are promoted this way, it's flat-out wrong.
If 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.
Congratulations 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.
Here's an interesting update on a new acute treatment for Migraine that's currently in Phase III clinical trials. If this medication comes to market, it would be an important new option for those who can't take triptans and ergotamines...
CoLucid Pharmaceuticals announced positive data from the pivotal SAMURAI study, evaluating lasmiditan oral tablets for the acute treatment of migraine in adults, with or without aura.
Happy Sunday to my Migraine family! As always, I hope you're doing well and that your head is being kind to you.
In a Facebook group, I just replied to a woman who had posted about an eight-day Migraine. Yikes! If I'm reading her original post and her subsequent responses correctly, she hasn't called her doctor about that Migraine.What has me thinking so much about this topic is that it's not unusual to see people posting about long Migraines.
I'm not sure why, but for some reason, it always surprises me when people have a Migraine that's been going on for days, but they haven't called their doctor. So, I'm theorizing about why people don't call their doctor when they find themselves in this situation. Maybe it's because...
they don't realize that it's not "normal" for a Migraine to last longer than 72 hours.
they don't realize that we should have access to rescue medications to use when our first-line abortive medications fail.
Whatever the reasons, my heart goes out to people who have these horribly long Migraines, and don't seem to have anything to do about them. Here are a few points about long Migraines and their treatment:
A Migraine attack generally lasts from four to 72 hours.
When a Migraine lasts longer than 72 hours, it's termed "Status Migrainousus," and we should contact our doctors for help breaking the Migraine.
Our doctors should be willing to work with us on a plan for times when our first-line abortive medications don't work.
It is not unreasonable for us to expect our doctors to provide us with rescue medications as part of our plan for times when our first-line medications don't work.
The emergency room and urgent care facilities are not good options for Migraine treatment. We're far better off getting help from our own doctors.
The bottom line here is that I hate to see people suffering and perhaps even taking risks. Asking our doctors to work with us on emergency plans and to prescribe rescue treatments isn't at all out of line. It's a very reasonable request, and one that the Migraine specialists I know are happy to discuss with their patients. There may be times when every option we have at home fails, and we can't reach our doctors, but those times should be very rare. With our doctor's help, we should have the tools we need to care for ourselves and, when those fail, be able to reach out to our own doctors for help. That said, we do need to not wait until evenings or weekends to call if we can call during office hours. If your doctor isn't willing to discuss an emergency plan and rescue treatments with you, consider a new doctor. It's your health at stake. It can be difficult, but we all need to be our own best advocates, recognize our needs, and take reasonable steps to see that those needs are met.