Choose Your Own Migraine Adventure
A game in which no choice will get you to where you want to go
When you have a chronic condition you must always hold out hope it will get better, which can blind you to the reality that in fact your condition may be worsening. As an optimist, I tend to inadvertently deny how poor the reality of my condition may be. But, like a mountain range with peaks and valleys, I understand that I am currently in a valley and am trying to play the long-game, to climb to a peak sooner rather than later. This writing was inspired by something I initially thought about years ago, when I was cycling through bouts of daily migraine for months at a time. I now find myself having similar reflections as I spend more time in bed and limited in many ways by pain and disability.
Having chronic migraine is like reading one of those books where the end of each event or chapter presents the reader with a choice. If you are not familiar, it goes something like this: A few pages into a book of fiction, at the bottom of the page, you are given two options. If you want the character to do A, turn to page 45. If you want the character to do B, turn to page 103. These books used to frustrate me as a child, because I always wanted to read all the possibilities. But of course, with so many options and criss-crossing story lines, I became overwhelmed and never succeeded.
As an adult playing a similar game in my real life, I find it just as frustrating. On any given day when I have a migraine I am presented with a choice. I can A, take medicine or B, try something non-medicinal to relieve the pain. If I choose to take medicine, it may or may not work, and I am guaranteed to experience medication side effects which interfere with my day, perhaps even more than the headache has. If I try something else, it may work, albeit less effectively but without side effects.
But let’s keep playing this game, because day one with migraine is just the first decision point in this story book. On day two the migraine returns. I still have the same choices available, only this time I know that the first option I tried was not completely successful since the headache came back. Maybe this time I will try a different A or B option. Other A options include: take a triptan + NSAID + anti-nausea medicine (up to 2 times a week), take Benadryl + prescription NSAID (only at night), or take a 5-day steroid rescue (only allowed 2–3 times a year). For me personally, other options that fall into the B category include one or more of the following: exercise, drink fluids, eat a meal, take a bath with essential oil, self-massage, breathing and relaxation exercises, take CBD, lay down and relax with a cold forehead compress, apply heat to my neck, take a nap, call a friend on the phone, watch something distracting to make me laugh, listen to a podcast, bake, or paint. There are also C options which are less desirable but should not be forgotten: schedule an outpatient IV infusion (if I can wait a few days), or go to the ED for IV medication. Both of these options leave me sedated, require a second person to accompany me, and cost hours to days of productive time, not to mention an expensive co-pay. And of course option D: Desperately call my doctor and plead for help in the form of some option not listed above.
Unlike the story book, these options are not mutually exclusive. In fact, some of the best chronic pain combatants, in my experience, include many of the above in combination. For example, this week I did the following: A, took meds. B, did self-massage, exercised, drank fluids, took a bath, did breathing exercises, laid down to relax, called a friend, watched something distracting that did make me laugh, listened to podcasts, painted. C, scheduled an infusion, and D, contacted my doctor.
But every choice has consequences, which alter the story line. If I decide to take meds, I know the side effects will leave me feeling mentally and physically “off” for hours, if not the rest of the day. Sometimes I lie down to nap, only to wake up hours later hungry, thirsty, and with a worse headache. Or, when I watch something to distract me, staring at the bright screen worsens the migraine. Many times I take medicine which cuts the headache within 30 minutes, only for it to return later that day while I am still feeling the medication’s side effects. It is the relentless, unpredictable nature of a chronic condition like migraine, coming in waves from disability to mere nuisance to completely gone, that chips away at any semblance of a sequential storybook life.
Beyond the immediate “I have a migraine, what do I do to make it go away?” question, are the more nuanced decisions I make every day in the name of prevention. I have reached a level of acceptance and understanding of my condition where I now consider potential migrainous consequences of any actions I choose before they occur.
Prior to becoming debilitated by migraine, I was an average young 20-something. I regularly went out with friends, drank alcohol, saw live shows, stayed up late, slept on friends’ couches, and even made spontaneous decisions to do any or all of the above. After numerous unplanned, horrendous migraines during what should have been “fun” events — like the time I got a severe migraine at a friend’s birthday camping weekend, and had to spend the night and next day trying to sleep in her car while everyone else celebrated around a fire and enjoyed the outdoors — I have learned that I must plan for the worst.
I now have back up plans for my back up plans. A couple of recent experiences highlight how this affects not only my day-to-day life, but also my interactions with others. This past fall I planned to go rock climbing with a friend on a high alpine peak in Colorado. I put so much time and effort into planning for the actual climb that I did not fully consider the potential consequences of a migraine, beyond bringing my medicine. Sure enough, as we hiked to around 11,000' elevation with heavy packs, I felt the altitude and my head started to hurt. We bivyed under a large boulder that night, and despite falling asleep later than planned, I did not change my alarm clock because we needed to get an early start the next morning. I awoke to my alarm at 5:30 a.m., groggy and with an intensely throbbing head. I immediately realized, “Wow, there is no way I can climb feeling this way.” I solemnly told my partner the news, but remained optimistic, “Maybe it will go away after I eat something and we start moving again,” I told him. The migraine did not go away, and feeling mentally and physically compromised I made the call to turn around and bail on our objective.
Several months later I made backcountry skiing plans with a friend and another partner. At this point my migraines had already increased in frequency and so I warned my friend the night before, “Just so you know, there is a chance I will get a migraine on the car ride over and won’t be able to ski.” “What do you want to do about that?” he asked. “Well,” I said, “I have to have a backup plan, or two.” We chatted some more and decided on plan #1: If I felt okay or had a low-level migraine, I could start skiing and maybe the exercise would help. If it did not, I could go back to the car and hang out or nap until the others returned. This led to plan #2: bring a really warm sleeping bag to sleep in the car in case I can’t ski at all and have to spend hours waiting for my friends to return. My friend thought I was crazy for even considering this, which he made clear by saying, “Sleeping in a frozen car with a migraine sounds absolutely terrible. Are you sure you want to come?” But he does not know what I have learned through years of experience with chronic pain: if I let migraines limit me before they even begin, then I will never truly live. I made the decision long ago to not let migraines run my life, and so I told him, “Yes, I am sure.” I did not get a migraine in the car ride up, and we had a fun and satisfying day out skiing.
I have learned to accept that friends, family, and acquaintances will not understand the decisions I make every day because of this chronic condition. Although I do not purposely mask my condition, I also do not go out of my way to reveal it. If it comes up naturally in conversation, usually about my diet, then I share openly that yes I have chronic migraines and that is why I am eating this way. If someone is curious and asks follow-up questions regarding migraine, I answer as honestly as I can, but this rarely happens. I have had countless friends — some of whom I’ve known for years — say after a first time witnessing me go through a debilitating migraine episode, “Wow I had no idea migraines affect your life so drastically!” My response is always a matter-of-fact, “Yeah, they do.”
Now that I have shared some of the more intricate subtleties that factor into the migraine adventure game, we can continue.
On day three the migraine returns after choosing A, to take meds on day one, and on day two to A, take meds again and B, try a combination of non-medicinal treatments. Now, I have more limited options remaining, and my physical and mental stamina are beginning to wane. I not only have to decide what to do to treat the migraine, but also when to do it. Do I go into work late and hope that an hour more sleep will help? Or do I try to make it through a whole day of work and nap when I get home? Another option is to try some gentle exercise, which typically has to wait until after the work day is over. I could stay home and follow a video online, or I could meet a friend at the climbing gym and hope the endorphins, socializing, and distraction help. This has backfired in the past, and on this day I leave the gym with a worse migraine than I entered with.
Days four, five, and six go by with on-and-off migraines that I combat with B options, since I am limited to the most effective abortive meds two times a week. Now, on day seven, I can once again take an abortive, but must first decide if I want to take the medicine immediately when I notice the migraine beginning, or wait to see if it increases with enough intensity to warrant using this precious dose.
One reason to not take the the medicine right away is something I hear my patients say frequently in the hospital: If I wait on pain meds now, I can always take them later. If I take them now, then I won’t be able to take them again for another X hours, and will be forced to suffer if the pain gets worse. In my case, if I wait longer between doses, then I can take the medicine every 2–3 days and get intermittent relief. Alternatively, if I take medicine two days in a row I have to wait a full five days before I can take it again.
It is this reasoning that gets pain patients in trouble with their doctors, and I know both sides of this disagreement very well. Having studied neuroscience and occupational therapy, and read countless journal articles about pain, current science tells us to always take pain meds early, to stop the pain pathway before the nerves become overstimulated and harder to turn off. But yet, my suffering self, who has seen too many days of pain with no medication available to stop it, wants to always have the option to take medicine. This self operates on emotions, not logic or science, and feels reassured knowing a definitive option exists that will offer relief within 20 minutes. Whereas the logical self says, “Play the long game!” “Take the meds right now!” “Don’t let your brain get into a state of continuous migraine!” Deep down I also want the elusive comfort of having a guaranteed “out” from a migraine.
At the end of the day, I understand that I will never be able to predict the future. Though I try my best in this present moment to mitigate future consequences by making informed decisions, no one decision will ever be truly right. In some ways, this experience has been humbling. It has taught me to live in and enjoy the present moment, especially if it is pain-free, without the added unnecessary stress of worrying about the future. In other ways it has been a burden beyond imagination. I envy friends and acquaintances who live their lives with no chronic health problems, no prescription medications, no unpredictable and debilitating pain that can turn a once-fun outing into a cruel nightmare on a whim. I long for the days when I could decide at 9 pm to stay up late and crash at a friends house, without a second thought. Now, if I spend even a night away from home, I must make sure my prescriptions are filled, meds are packed, and other B options are available, just in case.
The lifestyle I have chosen for myself has been carefully crafted after many missteps and unplanned detours. And yet, no matter how much I try, I can never know where I will be, or how I will feel one year, one month, one week, or one day from now. I cannot forget the delicate balancing act that goes into managing this disease, in which any wrong turn may set me back several steps or completely change the course of my life. The best, most empathetic friends understand this, and have granted me the flexibility to change or cancel plans last-minute, or have multiple back up plans and ways to build A, B, and C into the time we spend together. I need a whole lot of that right now, as I lie here in bed, contemplating the next choice in this migraine game.
