Mid-migraine, 2013 and today

(Links to journal articles and peer-reviewed literature at bottom.)

Anyone with a chronic condition is well acquainted with the helpfulness of friends. For the past thirty plus years, I have lived with migraine. Because I have been open about my status as a migraineur, my social feeds are filled with the well-meaning suggestions from friends who have seen something that might just help me. A couple years ago, there was a PR flurry about a nerve stimulation device that was allegedly “very effective” for migraine relief. It looked like a crown from a low budget sci-fi movie. I can’t tell you how many times friends shared that with me. Other useful advice received from people other than my health care provider: eat an apple every day, put a cabbage leaf on your forehead, quit gluten, quit caffeine, take caffeine, do yoga, meditate.

Meditate. For some reason, the suggestion of meditation would make me crankier than anything else I regularly heard. I resented the assumption that my pain and discomfort were not the result of some specific physical trigger, but could be omed away.

But then, a friend, not only well-intentioned, but the best librarian I know, sent me a link to a TechCrunch article with stunning claims by people who were using an app for chronic pain management called Curable. Normally, I would have said “thank you” and ignored it, but I knew this friend would not send me just anything she’d seen online. So I read it. And I tried it. After two weeks, the change was remarkable. I’m writing this now, solely because of Curable.

First, let me give you a narrative history of my life with migraine.

When I was a child, I loved the TV show Bewitched. It was a sitcom from the 1960s about a witch who marries a mortal man. There are several reasons I love the show, but I felt a particular kinship with Darren’s hapless, unlikable mother, Mrs. Stevens, who, when faced with bizarre and stressful situations that she didn’t understand, would declare “Frank, I have a sick headache!” It was her card to get out of whatever shenanigans were happening. Even as an eight year old girl, I knew exactly what she was feeling. I thought of it as being carsick when I wasn’t in a car. If you’ve never been carsick, it’s really miserable. It’s an unholy combination of nausea, dizziness, and head pain. Or, maybe you’ve had a hangover. Imagine being hungover or carsick for more than half of each month. That’s what living with chronic migraine has been like for me.

I didn’t learn that what I was experiencing was migraine until I was in my mid-30s. My sister had migraines as a teen. Hers were dramatic, with projectile vomiting and trips to the emergency room. It never occurred to me that what I had was migraine until a doctor labeled it so after I gave her my “carsick when I’m not in a car” description. I left that appointment with a prescription for Frova — the first-line triptan at the time. It was life-changing. At that point in my life, I was migraining 25–30% of the time. It wasn’t always debilitating, but it certainly presented challenges to a single parent who was working and going to graduate school. Frova enabled me to have fewer challenging days. Before Frova, my migraine toolkit included a cocktail of Advil + Dramamine. This would help minimally with the pain, but would address the nausea, and frequently knock me out so I could sleep it off. Frova seemed nothing short of miraculous.

The thing is, Frova didn’t do anything to lessen the frequency or intensity of my migraines. It’s what’s known as a rescue medication. You take rescue meds when you start to feel a migraine, and hopefully, you catch it early enough for the rescue to work because one of the weird symptoms of migraine is gastric stasis — the slowing down of digestion. If you wait too long, that pill is just going to sit there and not do you any good. To bypass your sleepy gut, you can give yourself an injection (but not more than twice a month). And if that doesn’t work, you can go to the ER for an IV cocktail. There have been maybe half a dozen times that I felt sick enough to want to go to the ER, thought for sure I was having a stroke or an aneurysm, but couldn’t imagine how I would get there.

With each new medication or treatment, I might get temporary relief, crow about it for a week or so, but they’d always come roaring back. I held down a job, mostly successfully, and managed to be a reasonably engaged parent. But my life got smaller and smaller and was in a near constant state of triage. You learn to not make plans.

Let me compress the next twenty years for you. My migraines became more frequent until I entered the realm of Chronic. Chronic migraine is when you experience migraine on fifteen or more days a month. Fifteen was a good month. Sometimes, it was daily. Along with this came a catalog of attempted solutions: different triptans; eliminating caffeine, sugar, wheat, alcohol, and dairy in various combinations, exercise, yoga, several different preventatives including anti-seizure medications, anti-anxiety medication, massage, and acupuncture. I was referred to a neurologist, had two MRIs, and several rounds of physical and occupational therapy. My biggest period of relief came after a marriage counseling session in which I realized that I was done and knew that the way forward for me was divorce. I had an unheard of two-week vacation from migraine. But the divorce process was drawn-out and untidy and the migraines returned.

Fast forward to October 9, 2017 when I got a message from my friend, librarian Nicolette Sosulski, pointing to the TechCrunch article. “I do not know whether or not it works but if it has a chance…,” she wrote. The article, written by TechCrunch columnist Jon Evans, told a story very similar to mine. His wife, Susan Brown, had chronic migraine, could kinda sorta manage with medication, but had more or less removed herself from life outside of work. She’d taken the same steps I had with diet and lifestyle, but they persisted. Within two months of starting to use Curable, she was down from 18–20 migraines a month, to one or two. Brown has since told her own story on Like Mind, Like Body, Curable’s weekly podcast and has become the community’s unofficial mascot and poster child.

So, what is Curable? It’s pretty simple. Curable CEO John Gribbin, says this on his LinkedIn profile: “Curable is on a mission to cure the world’s chronic pain through software.” The premise is that many chronic pain conditions, including back pain, fibromyalgia, and migraine, are exacerbated by, if not largely due to, pathways for pain that are created over months and years by fear, trauma, and a myriad of genetic and environmental factors.

Adrian Louw, founder and CEO of the International Pain & Spine institute explains it this way. He states that it is wrong to talk to people in pain about their biomechanical symptoms. “Not only does this model not work, but it actually increases fear and anxiety. Words like ‘bulging,’ ‘herniated,’ ‘rupture,’ and ‘tear’ increase anxiety and make people less interested in movement, which is essential for recovery.” (This was very true for me, when I was dealing with back pain.) Rather, he says, some people who are in chronic pain are not reacting to biomechanical issues, but have extra-sensitive “alarm systems” that never quite get back to normal levels after an illness or injury.

So, instead of focusing on fixing tissues, the better route is to introduce a variety of strategies to help soothe and retrain the nervous system. This, in a nutshell, is what Curable assists with.

The Curable app offers a three-pronged approach to retraining your brain and shutting down some of those pain pathways. The app uses meditation, mindbody exercises, and writing exercises to help the user address their underlying pain issues.

I reached out to a group of users and developers of Curable, asking for help with the “sciencey” stuff for this article because, a) there’s so much out there, and; b) I was worried about sounding like a flake. When I start talking about Curable to people, I feel vaguely evangelical.

I was surprised and delighted to get an email from Curable founder and CEO John Gribbin, who gave me great links to the “sciencey” stuff I’d asked about, including the news that several institutions have offered to conduct peer-reviewed research on the app in the next year. Because I have a lot of friends who are skeptics and work in science and medicine, I asked John what his Evidence Based Medicine elevator speech was. He admitted that he holds back with the hard science and explains that he leads with acknowledging the biopsychosocial aspect of pain, and then delineates the methods available for derailing chronic pain, including meditation and Cognitive Behavioral Therapy (CBT).

When I started using the app, it was web-based, but now there’s a native app for iOS and Android. When you start using the app, you are introduced to “Clara” an avatar voiced by a real person (with a very calming voice) who takes you through the lessons and exercises. The first few lessons are free, and the very first one is “How Emotions Create Pain.” It’s a very accessible explanation of how emotions can alter what happens in our cells. The free part includes recovery stories and more background information about the tools you’ll be using.

Screenshot of Curable app (Curablehealth.com)

To be very clear, Curable acknowledges that there are different kinds of pain, including pathological (like a tumor), physiological (muscle tension, blood flow, which do not create permanent damage), and the kind of pain that occurs as a response to what you are emotionally feeling. Curable makes no claims to fix everything. Users are encouraged to keep working with their doctors and take whatever medicine is needed. It’s not a cold turkey program.

After the first few lessons, you can subscribe, either monthly or for a year. Then you choose which packet you’d like to start with — meditation, mindbody/brain training exercises, or writing exercises. There are three to four exercises in each level and you set your own pace. As soon as you are done with one exercise, another is available. When you are done with a packet, you can do a different level of the same type of exercise, or try something different. Most of the exercises are at or under 10 minutes. Clara encourages you to repeat them as often as you find helpful or to go back a level or two if you’re not making progress.

One of the big things I did, in addition to the exercises, was to decide that I was not allowed to use migraine as an excuse for anything. I couldn’t call in sick with a migraine. I couldn’t blow off doing the dishes, couldn’t cancel a social event. If I got sick enough that I needed to cancel something, I was not allowed to say that I had a migraine — only that I was unable to do whatever it was. Even if I was only talking to myself. Thinking about my pain in a different way forced me to be honest with myself about how I’d come to use migraine as a get-out-of-jail-free card for various things that I found challenging. Migraine was a great, long-time pal for my social anxiety.

Remember, I first learned of the app on October 9. I was migraining more than twenty days a month, sometimes every day. By October 28, I was down to about one or two a week, and even those had lost their punch. I got along without medication when I could, which was most of the time. When I was feeling crummy, instead of taking to my bed or couch, I would make myself get up and clean the kitchen or hop on the treadmill and usually push past the migraine that was brewing. It’s late January as I write this, and although my migraines have not disappeared, my life is a lot different.

As other users of Curable remind each other quite often, recovery is not a straight line. It’s not a failure to have a bad day, just a detour.

Curable is not full of kumbaya affirmations. It’s hard work. You will be asked to be honest with yourself. Users talk about avoiding the writing exercises because they can bring up some unpleasant episodes in our lives. But those exercises end up being some of the most powerful and can work as breakthroughs for those who feel stalled out.

I’ve shared the app with friends with chronic pain conditions, and have gotten very little feedback. I don’t want to be THAT GUY, shoving another cockamamie cure in someone’s face. It’s hard enough to function well with chronic pain without someone suggesting you’re doing it all wrong. My bottom line when I decided to try it was that it would do no harm, and would much less expensive than medication, alternative modalities, and co-pays.

To be transparent, I have talked to a few of the people who develop and work on Curable through a Facebook group. I pay for the app myself and am not compensated in any way. Everyone associated with the project has been kind, supportive, and accessible, and they have all struggled with chronic pain issues. If you’ve got nothing to lose, I can’t recommend it enough.