If Only Migraine Were An Equation That Made Sense!
Migraine is NOT an equation! Coming from someone who hates math and has a total mind block against anything that even hints of an equation, that may not seem like an unusual thought to those who know me. However, I am often amazed at the number of “miracle cures” and unrealistic promises that are based on an equation theory. A theory that says the left side must always equal the right side. Why is it that for a disease that impacts 1 billion people globally there is still a pervasive and inaccurate thought pattern. If we were only to do X, Y and Z then VOILA… we would be magically cured?! Or at the very least, better able to “cope.”
Migraine isn’t a NEW disease
If only it were that simple! The reality is that migraine is a complex neurological disease about which extraordinarily little is known. Bear in mind that migraine is not a new disease! In fact, it has been around for thousands of years. Not only was it described by Hippocrates in 400 B.C. but also, even earlier, by the ancient Egyptians. So why the disconnect? What is it about migraine that results in so much misinformation? Why does it attract so many offers of snake-oil products to help, heal, and cure? And is there anything that we can do about that to help bring about change?
A new frontier for treatment
It has been incredible to see over the past two years a new frontier in the treatment of migraine disease. We have seen the first new preventive medications designed SPECIFICALLY for migraine (Aimovig, Ajovy, Emgality and Vyepti). In addition, we have seen the first new abortive medications for over two decades (ReyVow, Ubrelvy and Nurtec). Not only has that restored hope for countless people who live with migraine, but there are many more options in the clinical pipeline. Some in the same classes as are already available but several which are based on new and innovative research.
Migraine doesn’t have EASY answers
However, even with all that much-needed change and new options there remains a pervasive cloud of misinformation. The reality is that there is still a lot that is unknown about what actually causes this disease. Even less is known about who will respond to what treatments or… who will have intolerable side effects. In short, research has a long way to go and in the meantime, there are no easy answers.
Migraine attracts snake-oil promises
There is something about the unknown that makes human nature want to fix the problem. In general, that’s a great thing! Brilliant entrepreneurship and genius scientific discoveries have made radical differences in human lives for centuries. However, trailing doggedly behind those who are scientifically-focused have been unending lines of snake-oil salespeople. Unproven cures and unrealistic promises about products that are likely to do little more than empty your pocket-book.
An endless cycle trying to find something that works
Some of these products can even aggravate the disease they claim to treat or cause additional problems. That, of course, then sends us on a new search for things to help, and so the cycle goes on. In the past, this has meant such bizarre options as tying a mole to your head, putting electric eels in a bath, or even drilling a hole in your head. While you may shake your head at the craziness of these options, modern-day miracle cures often aren’t a huge improvement. They range from putting a banana peel on your forehead or drinking pickle juice to having an ice-cold bath or taking a nice long run – yes, while your head is exploding!
Migraine is not a lost cause
The array of often unhelpful products can be overwhelming and discouraging to many who struggle desperately to survive with migraine disease. However, there is hope. Not only is there hope, but we can ALL make a difference and help bring about change. I often think about the campaign to find a much-needed cure for breast cancer where incredibly courageous women started taking off their wigs and showing the world the devastation of that disease. This helped open the eyes of the world!
Taking off our masks
What would happen if those of us who live with migraine actually started taking off our masks? Masks that we often wear like essential protective armor to hide what is going on in our lives. What would happen if we started speaking out with one voice about the devastation of this disease...about the impact not only on individual’s lives but on society as a whole? What would be the result if we stood together as ambassadors of change? It is time for each and every one of us to be armed with accurate information and speak out as advocates for change. Let’s find the courage to show what this disease is really like and say, “No more! Migraine is not an equation, there are no simple answers. We are not invisible, and it is time for us to be heard.”
What are some of the craziest things you’ve heard of to “cure” migraine? Do you tend to wear a mask to hide the impact of this disease in your life? How hard or easy is it for you to be an ambassador of change for a disease that is so misunderstood?
How much has your migraine disease changed or evolved over time?