Tending the Body, Tending the Mind
Many smart people have worked on the problem of migraine. Thanks to their efforts, many others have found their way swiftly out of migraine hell. For this, I am grateful.
But the truth is, despite all this effort, many still wage a day-to-day battle with the disease. After years of struggle, my own turning point came after I tried a treatment that had never been suggested to me by any of the very capable doctors, including two headache specialists and three neurologists, who had treated me.
The more I recover my health, the stranger the whole exercise seems. While the road I've traveled will be familiar to many, there are many more for whom parts of it might seem novel. A major motivation behind my taking the time to write all of this down is the hope that having another voice affirm a path that has worked, at least in my instance, will make it easier for someone else to avoid the years of pain and frustration I experienced.
Learning Cause and Effect
When migraines seem to keep coming no matter what, we migraineurs dive deep into the weird and wacky world of trigger hunting. When we're lucky, the triggers — those inputs that our bodies are reacting to in a way that prompts migraine— jump out at us, we adjust course, and the migraines go away.
Triggers, Why Must You Be So Coy?
But those of us who aren't so lucky can easily descend into a rabbit hole of paranoia. It can seem like nearly anything can trigger an attack, because odds are, it does for somebody, somewhere. When attacks are really painful or disabling, we become intensely motivated to hunt out every last possible culprit.
Diligently pursuing trigger identification is healthy. Obsessing about it is not. It is a very fine line.
My migraines progressed from occasional inconveniences to a full-time job. Along the way, I considered and rejected innumerable possible causes. I laid awake at night trying to figure out what I was doing that was so wrong it could warrant this kind of torment. I wanted migraine to have a Reason.
People all around me were living lives much like my own, and not getting sick. What did I have to do to be like them again? Why was it so hard? This sense of personal failure is hard to avoid with a disease like migraine.
Something I wish I had understood earlier is that some awful secret sauce of attack frequency plus attack severity can make your body so sensitized, so accustomed to pain, it literally is triggering its own attacks. This is not where you want to end up. I think if I had realized this was the road I was on, that this could actually happen to me, I would have spent less energy on trigger-hunting, and more on whatever dramatic steps I needed to take to control the pain and attacks.
Instead, I slid down the terrible slope from episodic migraine into chronic migraine. Maybe it was inevitable, it's hard to say. But I doubt it. I bet if I had gotten better counsel early on, and had the foresight to follow the good advice I did get, I wouldn't have ended up as sick as I became.
The way I see it, there are three reasons triggers can be so hard to isolate.
- They are cumulative.
- They may provoke our bodies at different speeds
- We have no control group as we experiment on our own bodies.
By "cumulative," I mean that maybe Suspect A — say, a cup of coffee — isn't enough to prompt a migraine attack. And maybe Suspect B — a hot afternoon at the San José Jazz Festival — isn't enough, either. And maybe Suspect C — that flickering light at the restaurant — also isn't enough by itself. But a day that starts with coffee, sweats to good music, and finishes at the restaurant is one nearly certain to trigger an attack. Similarly, if you wait to drink a glass of water until you're really, really thirsty, maybe Suspect D, dehydration, isn't enough to prompt an attack by itself. But put you at that sizzling summer concert too, and you might not need coffee or flickering lights to push you over.
Also, not all inputs are triggering to the same degree. Maybe it takes three days of ice cream for all that sugar to catch up with me, but only one glass of wine. So in addition to different combinations of triggers, they might have different values on some scale of danger we poorly understand.
You can see, then, that if you have, say, twenty trigger suspects — which is where you will easily end up if you take all the lists about triggers seriously — the mental calculations can quickly become overwhelming.
Their Timelines are Variable
It's not always easy to tell when an attack really begins. Self-knowledge is not absolute. My attacks can be sneaky. Sometimes they start with something unremarkable, like irritability, or lethargy. There are many reasons a person can be tired that have nothing to do with migraine. Maybe I'm fighting off the flu. Maybe I'm not sleeping well at night and don't even know it. Maybe I overdid it at work or play.
Then, maybe hours or even days into my sluggishness, my body will go into Dire Emergency Mode. Now, in trying to figure out what happened, do I examine my inputs before the headache really started, or do I rewind the clock way back to before the lethargy started? It's not always easy to tell. And life is full of inputs: during the course of several days, I might have done or been exposed to hundreds of different things, any one of which might have been The Culprit. Or, even more irksome, maybe it was the lethargy itself that prompted the attack. Maybe it was my failure to get as much exercise as usual, or maybe I overslept. For those of us with very long, slow migraine attack cycles, it's not always easy to tell cause from effect.
Also, there is no consensus or consistency about the interval of time between when a trigger occurs, and when the migraine really kicks off. In my own body, I've come to understand that one trigger can act quickly on my body — say, bad lighting — while another might take longer to have any effect — particularly dietary choices.
Put all these variable together, and you have a challenging chronological picture. Just another way that migraine is a pain in the neck.
I Am My Only Lab Rat
By "control," I'm talking about the idea in science that you want to have at least two different, but comparable subjects in your experiment, and at least one who you do not actually do anything novel to. In other words, you give one mouse the special cheese, with Marveldrug added to it, and the other mouse just gets regular cheese. You have them live side by side, ideally from birth, and even more ideally they are from the same mother. That way, when the Marveldrug mouse starts yodeling, you can know for sure that yodeling is not just something that the mouse would naturally do. You can look at its sibling, still squeaking in the usual way, and be more certain that a side effect of Marveldrug is yodeling.
When you are both the scientist and the experimental mouse, that certainty becomes exceedingly valuable. But you have no kindred mice to foist your daily decisions on. There is no way to compare results between the experimental subject (you) and the control (nobody).
Actually, that's not entirely true. There is a way you can compare the results of your inputs, though it is much harder and subject to misinterpretation. And that is by tracking all of those inputs over time. That is why I log a lot of things about my life extensively, and spend time with this data to try to spot patterns. In fact, I log more or less everything I've written about in this entire, ~20,000 word web page you are currently reading (and that's not including the rest of Migraine Island!). Even now, as I've got a pretty good grip on my health again, I have to keep logging. It keeps me on track, and helps me remember what I'm doing. But also, I am really hoping that the day will come soon when I heal well enough to loosen up more on some of these limitations. If I knew I no longer needed to worry so much about, say, my sleep patterns, then I could start taking in late-night jazz shows again. And THAT will be music to my ears.
So, as you continue reading, understand that when I am describing in the rest of this section what I do to stay healthy, it is because the pattern I've noticed is that NOT doing all of these things tends to trigger my migraine attacks. Any one thing might not be enough (though some probably are), but life is never full of just one thing.
My ultimate health goal is to get to the place where I am far more resilient in the face of these triggers. I would like to be able to withstand more clusters of them, for longer, without fear that I will be temporarily disabled as a result.
Tracking the Experimental Self
My self-care routine continues to develop. I know this because I track it every day using templates I create and print out for this purpose. Each day, I go to my migraine log clipboard and spend about ten minutes filling it out, usually right before I go to sleep. It is a record that helps me spot patterns in my health.
I use about half of the log to track everything I've eaten, which is a big undertaking, to be sure. The other half records my exposure to known and suspected triggers, my preventive self-care, and the details of any attacks.
The log serves not only as a record through time, but as a checklist I use to guide me, especially on muddle-headed days when I'm trying to keep an attack from going Full-Blown but I'm struggling to remember how.
When I log attacks, I use a scale of 0-5 to measure attack severity. (I hate that 10-point scale often used for pain. Really? You expect me to know the difference between an 8 and a 9? Here, let me stop writhing in pain long enough to perform the calculation and tell you. Here is a fabulous satirical take on that scale. I wear the tshirt.)Each day, I write down where I was, at my worst, on this scale:
- 0 means I had no symptoms. Lately, I have been having several 0 days per week. This is why I feel ready to say I am in recovery from chronic migraine. (Yay!!)
- 1 means I had a minor headache, sensory sensitivity, or associated symptoms. But they were mostly just irritating and didn't keep me from functioning.
- 2 means I had migraine symptoms serious enough that I struggled to function. For example, working at the computer is painful and confusing. I couldn't keep up with housework because the movement made me dizzy and weak.
- 3 means I am in the headache phase of a full-blown attack. I am bedridden. I may be able to listen to soft sounds like an audiobook, but there is very little else I can do without escalating into...
- 4 means I am semi- or temporarily un-conscious because of migraine. I am probably writhing in pain or, because it hurts to move in any way, including writhing, spending all of my energy trying to hold still. I cannot endure any stimulation, the pillow under my head somehow hurts, and eating is completely impossible. A "headache" that reaches this point generally lingers for days.
- 5 means...I have never reached a 5, and it's not the way I want to die.
Sometimes I can't decide between two points on the scale, so I split the difference. (Okay, so maybe this sort of converts my 5-point scale into a 10-point scale. I don't care. It still irritates me less.)
For years, my attacks more or less inevitably ended up as 3's, or worse. In the last few months, they have been far more likely to max out at 2, or even 1. It is difficult to overstate how significant this change is to my quality of life.
On only a handful of occasions, I've reached a 4.5. Honestly, I still feel traumatized by those experiences and I try not to think about them. The body's capacity to generate pain is truly extraordinary.
Above, you can see what a timeline of this system looks like for the last 18 months, ending in April 2015. (You can try clicking on it for a larger view.) You'll notice there are many blue points at a "3" or higher on the left side of the chart, in late 2013. Then the frequency of "3's" starts to decline, then resurges in July 2014, then starts to decline again, and all but disappears starting in December 2014.
I try to stay focused on the yellow line. This represents the 30-day moving average. My aim is to keep it under the "1" line. You can see that since December 2014, I have been mostly successful at that. Not coincidentally, this also coincides with my finally finding medicine that really, consistently, helps prevent and treat my attacks.
I keep track of things so extensively because, as I said above, I am my own experiment, minus a valid control subject. Nobody else has exactly my body, and the medical establishment hasn't solved my problem, so it is ultimately up to me to spot patterns and trends in how I take care of myself, to figure out what does and doesn't work for me.
In addition to the clipboard that I use to track my self-care choices, I also use online tools to help manage migraine. These require me to use a screen, so they aren't a good option when my light sensitivity is bad. My current medication and ergonomic setup has vastly expanded my ability to use the computer, so I'm using these kinds of tools more.
The most important to my health and happiness has been HabitRPG. This is a free, fun way to stay motivated to do the things you know you have to do, even when you don't feel like it. It has a fabulous intrinsic silliness that is so valuable to facing a really daunting task like migraine management. There are also many Guilds where people chat about the habits they are making or breaking and lend each other moral support. I've been playing for over a year and it just keeps getting better and better as new features are released.
Other online tools I've found valuable include:
- Clockwork Tomato. Usually cited as a productivity tool, The Pomodoro Technique® is a registered trademark by Francesco Cirillo; it has inspired many apps. Clockwork Tomato is one of these. I like it because it is highly customizable. I use it for work productivity. In my case, frequent breaks are important to maintain my health; I discuss this below. I don't sit or work for long periods of time without frequent, physically active breaks. I use the app to remind me every twenty minutes that I need to step away from my work and stretch or exercise.
- Trello. Although I favor HabitRPG for those habits I want to do daily or frequently, I started using Trello to log individual exercise routines that change from day to day. It's an easy way to track and manipulate lists and lists of lists, and lists of lists of...you get the idea.
- Relax Melodies P. This doesn't help track migraine, but I like it so much that I'm including it anyway. This app provides a wide range of sounds that can help cancel out noise pollution. What I really appreciate is how customizable it is: I can group different sounds together, set different volumes for each, and save them for different uses. For example, for a migraine that is a "1,""2," or "3," I find listening to a combination of "Isochronic Tones 2.5," "Brown Noise," "Storm," "Monk Chant," and "Jupiter," can help keep my pain levels down. I save other combinations for other uses, like going to sleep or writing while the dog is guarding the house from ferocious, life-threatening squirrels.
- NoSquint. Changing the appearance of websites has helped my brain focus on their content. Below I describe this more. Lately, the NoSquint add-on for Firefox has been instrumental in making the Internet a more accessible place to me. It helps me quickly and easily change the color schemes of other peoples' websites so that reading them doesn't hurt my head.
The Most Important Choice
Every day, we denizens of Migraine Island must make many choices against migraine and in favor of our health. The most important of these is to choose to be other than cruel to ourselves.
Cruelty says to a one-legged athlete: you must run like everyone else to earn your place in the corridor of my respect. Cruelty says to the child: grow up, already. Cruelty says to the immigrant: I won't listen to your story until you speak my language my way.
Let's not be cruel. Neither to each other, nor to our selves.
Let's not deny our bodies the rest and healing and nurturing recovery they need. Who are we, if not our bodies? Are we only vapors of ideas, drifting about this rapidly spinning orb?
No. We are more than that. We are physical. We are animals. We are a panoply of microbes, working in concert with our billions of cells. We are a miracle of cooperation. We are the outcome of eons of evolution, and are riding that biology still.
We are wild monsters, tearing through our neighborhoods, and we long to feel the raw earth spilling through our fingers, the rough barks of trees, the rich mulch of sex, to have our ears accosted by laughter vast and full. We aspire to build, and make, and give ourselves to others, near and far. We want all the greatness we can muster. Honor this. Cherish this, you living thing, and all the effort that comes with it. Be kind to your weary, striving self.
Dare to Hear Your Striving Self
Close your eyes. Take a deep breath. Ask your body: what are you saying to me? What do I need to hear? Sometimes the message that returns to this query is a difficult one. Sometimes hundreds of miles trekked alone in the wilderness are no challenge at all, compared to a moment of stillness with one's own body. (I know: I've done both.)
Sometimes what our bodies request is more than we can provide in the present moment. That is, perhaps, the most important information to hear: when the body says I am very, very tired and I want to rest. And I want far more of it than you have ever been willing to give to me.
When this message comes to us midstream in the rapids of life, we don't want to hear it. It seems an unreasonable demand, an obstacle to avoid. But, these are our bodies we're talking about, not some salesperson encumbering us with a garish pitch. These are OUR bodies. You and me.
What does it really mean when we stop listening to our bodies? It means we aren't listening to ourselves. It means we aren't listening to the only voice that is authentically our own. It means we are practicing a form of self-denial rooted in nihilism and not-being. This is an option. But it is a grave one.
I write these words as a beginner. I write these words as one who has made years of mistakes. I write this having learned the very, very hard way that ignoring the body is ignoring the self. And ignoring the self is a way to kill it. And, unless you have a twisted, dark worldview that can hold no love for anyone, you must love the individual that you are. For failing to love yourself will lead to failures in loving everyone else. And surely, we aspire to greater than that.
The Other Choices Follow
Every day, I wake up and, against cruelty, I begin my self-care routine. There isn't much room for "cheat" days in this. A day off is a day I will probably get sick. So instead of choosing that more miserable route, I try to choose self-care.
Following a Daily Pattern
The rest of this page is devoted to describing the habits and approaches I try to take every day in order to prevent migraine attacks and to reduce their severity when they do occur.
Migraine brains like pattern, routine and predictability, so I try to provide mine with that. Unfortunately, this is incongruent with my personality, which enjoys adventure, novelty, and exploration.
I used to see this contradiction as evidence of some sort of brokenness inside me: the conflict between what I want and what is good for me. Now I don't see it in moral terms at all. I think it has more to do with the genetic traits described by Dr. Elaine Aron in her work with highly sensitive people and high sensory-seeking people. In short, some of us are both highly sensitive to sensory stimuli (it's just the way our bodies are) while also more inclined to avidly seek it out (ditto). Having both of these traits hard wired in your body is a relatively rare and perhaps troublesome combination, but even if you aren't in this cohort, you can probably identify with the competing impulses at work: the one that says "Hey! Let's go check it out!" and the one that says "Whoa, that might be a little too much."
Obviously, I can't act on my impulse for adventure if my neurology is uncooperative. Part of my chronic migraine recovery has been identifying where I can indulge my curiosity and love of new things, and where I need to play it safe, putting that impulse on hold. By entraining and patterning my body in many different ways, my hope is that my baseline of migraine vulnerability will shift in a favorable direction, and I can get back to backpacking and scuba diving and hang-gliding and lots of outdoor music festivals.
***Please note:*** I am not pretending to know whether the following list of daily disciplines is the one you should use. Migraine is very unique to the migraineur, and I am not a physician or expert of any kind. But many of the ideas on this list are similar to other peoples' experiences, and it might be worth checking them out if you haven't already. I've assembled a recommended reading list here.
Also, note that in my case at least, I did many of these things individually, or a subset of them, for some time before I really turned the corner on my disease. It turns out that my body needed 1) persistence over the course of months, and 2) ALL of these things, put together, to really start to thrive. My attempts to just nudge myself in a healthier direction weren't enough. I needed a complete overhaul, incorporating all aspects of my health in order to finally start to recover from chronic migraine. And, ultimately, nobody can be in charge of that, except myself.
The Foods I Eat
Food is tricky. It means so many things: nourishment, pleasure, social ritual, entertainment. The air where I live is now thick with divergent ideas about what to eat or not to eat, how to live our values through our food choices, how to care for each other and our planet and our farmers and our livelihoods. I'm not going to dive into most of that here, although they are worthy topics, all.
Instead, I am focusing on the more narrow question of how I have come to eat for the sake of my health. Not necessarily your health or anyone else's, but mine. I have tried elimination diets, vegan and vegetarian diets, diets that isolate one or more food groups, low-carb and ancestral diets, and others. My kitchen has become a place of wild experimentation. I have read quite a bit of advice about how to eat for migraines, most of it conflicting, and so I have no interest in promoting any particular dogma here. I trust you will take what is useful to you and ditch the rest.
Healthy v. Gourmet
Food is a place where financial resources matter. I am privileged to be able to afford to eat a wide variety of healthy foods, day after day, and to have the time to prepare them. I know many, many people do not have the kind of access to food supply and variety that I have. This is a grave social challenge that is beyond my power, at present, to solve. So I focus on remaining grateful, and try to take nothing for granted.
If your situation is different from mine and your food budget or access is very limited, I won't pretend to know what you should do. Food is so fundamental for us all. I want you to have the right to eat in your best interest. Many innovations are happening in my country to improve access to nutritious food. I hope these or similar efforts will reach you and your situation will improve.
One source of confusion around healthy eating is the conflation of gourmet and healthy. I'll admit that I spend more money on grocery shopping now than I used to before I paid very close attention to what I was eating. (Although, I used to eat out MUCH more often, so it is possible I am spending less on food overall.) But all around the world, from the dawn of humanity, people have been eating nutritious food that was affordable, too.
While high-priced food retailers are happy to convince us that we need rare, special, costly ingredients in order to be optimally healthy, we don't have to buy that line. Sure, it's fun to snack on smartly-marketed foods that maybe my great-grandparents didn't have access to. I currently can't get enough toasted coconut chips, for example. But in many cases, these foods aren't really necessary to my health or my happiness. Sometimes it is the cheapest, most overlooked foods that really pack a huge nutritional punch. My recent infatuation with the lowly rutabaga is one example of this.
Nutrition In, Health Out
Having said all that, here is how I eat now, while I am recovering from chronic migraine. Cause and correlation are two different things. It may be more correlation than cause that I am getting better while eating in the way I describe below. Usually, when I veer from this diet, I am veering from other patterns I've established in my life, too. So it's hard to know exactly which change prompts the attack: was it the lighting in the restaurant, the late night, the loud music, or the food?
At the same time, the wisdom of the old saying "You are what you eat" is undeniable. Obviously, my body is built with the raw materials I feed it. The better the raw materials, the better the body. The better the body, the better the overall health, including the health of my migraine brain.
Feminism in the Kitchen
I am not innately the domestic sort and spending a lot of time in the kitchen initially felt oppressive to the side of me that rankles at being pushed into "traditional roles." There isn't enough time in life to excel at everything, and I am more drawn to more worldly pursuits. I resented sacrificing my time doing those things for kitchen work. Also, I wasn't good at it, and didn't want to take the time to learn.
As with so many things, migraine didn't care about all that. I learned the hard way that my body needed nutritious food, and if I didn't make it, I likely wouldn't get it.
It certainly helped that my spouse has grown along with me in kitchen aptitude, and he takes responsibility for grocery shopping, food preparation, and clean-up, too. Still, he doesn't have the same dietary focus that I do, and so the burden for my food preparation is mostly my own.
The good news is, with time, the kitchen work comes more easily, takes less time, and feels less burdensome than it did in the beginning. Now I even feel pride, from time to time, in my kitchen work.
Making Things Easier
There is no substitute for practice, but here are some tools that helped ease me into a lifestyle of healthy, homemade food. If you are having struggles similar to mine and can afford it, you might consider outfitting your kitchen with some or all of these tools, and learning how to use them.
- Pressure Cooker: This is how I make a lot of healthy foods become "fast food." Read reviews and buy one with a reputation for safety and reliability. My mom got me mine (thanks Mom!) and I use it all the time. You do need to be vigilant when using a pressure cooker to monitor it for safety. But I haven't had any problems in years of use and it is totally worth the vigilance.
- Slow Cooker: A slow cooker enables you to do your food preparation at a very different time of day than when you need to eat. This provides greater flexibility. Also, it's really easy to use.
- Food Dehydrator: I live in California, and our farmers' markets here are AMAZING. I can buy bushels of fresh melons and apricots and persimmons and berries and many other varieties of delicious for cheap when they are in season. A food dehydrator is a way to capitalize on this bounty by dehydrating the fresh fruits so I can enjoy them year round. (A freezer helps, too.)
- Salad Spinner: Eating a lot of greens means washing a lot of greens. A salad spinner makes the process go much more quickly. (It can help save water, too since you can easily soak greens and strain them.)
- Dessert Bullet: There is this crazy little contraption on the market that quickly transforms frozen fruit into no-sacrifice dessert. It was a revelation to me and helped me break my sugar addiction by moving me away from ice cream and frozen yogurt. Fruit has sugar in it, but it also has fiber and other nutrients, so eating whole fruit, blended into creamy goodness, is a step in the right direction.
- Immersion Blender: A quick, low-fuss way to blend up a smoothie or turn a chunky soup into a smooth one.
- Herbs, Spices, and Essential Oils: These plant parts are not only full of unique nutrients, but they can make a very simple, drab meal become an adventurous one. I experiment with flavors often. I won't claim to be good at it, but it does make cooking more fun.
- Cookbooks: Having some well-indexed cookbooks in the kitchen makes it easier to use whatever ingredients you happen to have around. I prefer paper over digital because 1) our hand-held devices tend to be germ magnets, and 2) if I accidentally spill tamari sauce all over my book, I don't risk losing hundreds of dollars.
- Music: Why not have a dance party while you do your kitchen work? It's not hard with good music readily on tap, and it makes the food taste better, too.
- Vitacost or similar online marketplace: I try to encourage my local grocery store to stock local, healthy whole foods by buying them there. But I turn to the selection at an online marketplace like Vitacost for foods that are harder to find, like a variety of nuts, seeds, and healthy snacks.
By volume, most of what I eat are fresh, organic vegetables and fruits, usually bought from the local farmer's market.
My mainstay vegetables for a long time have been lots and lots of cooking and salad greens, supplemented with celery and carrots and radishes and such. Lately, I can't get enough root vegetables: sweet potatoes and yams, beets, turnips and rutabagas, taro and potatoes. These are high-energy foods with robust nutritional profiles that you can stick in the oven and ignore for an hour or so; then you have something tasty and filling to eat.
For sweets and snacks, I eat fresh or dried fruit.
I also eat a lot of raw or roasted seeds and nuts. There is this whole universe of seeds and nuts that are easy to overlook because our grocery stores promote complicated, highly processed foods they can overpackage and sell to sate our ongoing cravings for sugar, salt, and fake flavorings. Seeds I eat a lot of include pumpkin, chia, sunflower, and hemp. Nuts I eat a lot of include coconut, cashew, brazil, walnut, pistachio, and almond. My go-to breakfast as I write this includes a handful of nuts or seeds, a piece of fruit, and my Special Morning Treat.
I eat meat and dairy. Mostly, I eat organic, and whole-fat. I also eat fish, and I try to follow Seafood Watch guidelines. Not a day goes by that I don't think about the impact eating animals has both on the animals and the planet. I try to be grateful as a starting point for ethical eating. I know I am very, very fortunate to be able to choose what I eat from such a broad range of options.
I also try to view meat and dairy as optional and supplemental to plant-based foods. I don't eat them every day. But there are nutrients abundant in animal food sources that my body especially needs and are hard to get from other places. Also, my ancestors ate animals and I believe my body evolved to eat them too. So I eat them, and meanwhile I try to be as mindful and responsible about it as I can be.
In recent weeks I've been avoiding eggs. I had been eating eggs for breakfast, but then I noticed a minor headache coming on most afternoons. So I cut the eggs out and the afternoon headaches disappeared too. It's proof of nothing, but it's what I have to work with, so I'm skipping eggs for now.
There was a time when I ate a lot of legumes (beans, peanuts, soy). These are nourishing, high-protein, high-carbohydrate foods that have been instrumental in our species' development around the world. They are good foods.
Lately, though, there has been more chatter about the fact that legumes can be difficult to digest, and the potential relevance of this to the inflammatory factors with migraine and other challenging diseases. (Dr. Josh Turknett's book is one example of this.) So I eat more animal proteins than legumes now, and meanwhile my body is healing. Again, I don't know that it is causal, but there may be a correlation. As a result, I'm not in a hurry to go back to a heavy-legume diet, although for environmental reasons I believe that would be a better place to be. It is on my list of transitions to try to make after more time has passed since I was very, very sick.
I am strictly gluten-free. (I don't eat wheat, anything derived from wheat, or related grains.) Again, maybe this is just superstition or the popular fad. Or maybe being gluten-free eliminates a lot of other tempting foods that are bad for me for reasons other than the gluten. I will introduce gluten again to my diet after I feel more secure in my health. But meanwhile, the worst of the transition to gluten-free is over, my health has improved, and it's a lifestyle I am now comfortable maintaining more or less indefinitely.
The only grain I currently eat in any significant quantity is rice (usually brown rice). I have nothing against oats, corn, buckwheat, millet, and amaranth, all of which I've enjoyed in the past. Quinoa I used to eat a lot of, but I noticed that even after I thought I rinsed it thoroughly, it sometimes made my stomach feel burbly. (Unprocessed quinoa had a natural soap-like substance on it that needs to be rinsed off to avoid this effect.) Quinoa is a great food and I hope to add it and the other grains (seeds, really, some of them) back into my diet, but again, I'm not in a hurry because my health has finally stabilized and I'm not sure where the magic is. Organic brown rice is readily available to me, it's easy to make, and it's versatile. So it meets my needs.
However, overall, not even rice has a prominent place in my diet. I prefer to get my food energy mostly from the other sources described above.
The Bad Guys
Then there are the categories of foods I pay close attention to, because I try to avoid them. These are simple sugars, "mystery ingredients," and caffeine and alcohol.
I used to have a sugar addiction, it's true. Frozen yogurt, in particular. My mouth still salivates, just thinking about it. It's easy to be an addict in my culture because so many foods have added sugar. But now, I avoid added sugar with rare exception. The reasons are twofold.
First, I want to get as many nutrients (e.g. vitamins, minerals, phytochemicals, proteins and amino acids, and healthy fats) as possible in my diet without eating more food energy (calories) than my body needs. High-sugar foods tend to be low in other nutrients, so when eating high-sugar foods you are basically choosing sugar over other things that may be more valuable to your health.
Second, I'm pretty clear that I don't benefit from letting my blood sugar levels spike. I'm not even close to diabetic, but my observation is that my migraine brain gets too excited by lots of sugar and is more vulnerable to attacks. As a result, I generally avoid processed sugar.
Having transitioned to a simpler, whole-food diet, I have lost the taste for most foods that have a lot of added sugar. I will eat it in minute quantities or, rarely, in larger amounts, such as in full-fat ice cream (The fat at least helps slow down my sugar uptake. Also, YUM.)
When I say I monitor my sugar intake, this means more than added sugars. I don't drink fruit juices, and I'm careful about eating fruit on an empty stomach. I LOVE fruit and eat a lot of it, I just try to eat it in a way that my body isn't going to get a sugar spike and crash. This is especially an issue for me really high-sugar fruits like melons and canned fruits like pears or peaches. The former I eat, but either in small portions or when I know I've got some heartier fare digesting in my belly. The latter I really only eat when I run out of fresh or dehydrated fruits. (The process of cooking fruits for canning makes their sugars hit the bloodstream faster and removes some of their nutrients.)
Avoiding sugar spikes also means I don't buy products simply because they are labeled "gluten free." Just because a processed food has that label doesn't mean it's good for me. As a general rule, the less processed a food is, the slower it digests. Slow digestion is, for me, generally a good thing. So I generally skip crackers, cookies, pretzels, and other baked goods that are gluten free because I want to get my food energy from rougher, more nutritionally dense sources.
I do make exceptions. Most importantly, migraine can make the digestive track stop working. (Thus the nausea or, more commonly, loss of appetite.) But low blood sugar is also hard on my migraine brain. So the trick when recovering from a migraine attack is to start nourishing my body again gently, however I can. I find this is a good time to eat a little bit of white rice or rice crackers, or cooked vegetables or fruit. I will even try a little bit of something that is denser, like cheese. And then, if I've been feeling blue while recovering from an attack, Sam will sometimes fetch me some ice cream. I'm not sure it's good for me, but it does put a smile on my face.
"Mystery ingredients" is what I call anything added to food that I either cannot identify or that required significant processing by a food manufacturer. This is a catch-all category of food colorings, "natural" and other flavorings, preservatives, artificial sweeteners, and multi-syllable ingredients that most of us eaters would be hard-pressed to find on a farm or in the wild. These things aren't necessarily bad, but they also aren't necessarily things my body evolved to eat. Some of these things have long been rumored to excite neurons in a way unhelpful to migraineurs. (MSG aka monosodium glutamate aka yeast extract aka "natural flavoring" has been a suspect for a long time on this front. The basis for this is that glutamate is connected to certain processes in the brain involved in migraine. The science is far from settled on this, and it is indeed found naturally in some foods, but it seems to me it's one of those things I just don't need to eat at the concentration which makes it effective as an added flavoring. This rules out a lot of restaurants, unfortunately.)
I don't know which of these mystery ingredients matter and which don't (it seems nobody really does), but given how touchy my brain is, it is easiest just to steer clear of them all, and focus on simple, whole foods with recognizable ingredients. Once I learned how to prepare my own foods (a major undertaking, to be sure), this approach has the added benefit of making shopping and tracking easier. I basically avoid most of what is on offer in most grocery stores, spending my time in the produce section and the sections devoted to animal foods. And, when it comes to logging what I eat, it is much easier to track short, recognizable ingredients, than "foods" with long labels I would need a chemistry degree to understand.
Caffeine and Alcohol
I have also had coffee and chocolate addictions. Fortunately I've never been addicted to alcohol, but I used to enjoy a drink or two a couple of times a week. All this has changed. My current headache specialist insisted I give up coffee (and Excedrin-type medicines, which have added caffeine). I kicked and screamed about it, and then I buckled down and broke the habit. (Gradually, because caffeine withdrawal can provoke headache.) Like any addict, I was miserable for a while, but now coffee has very little role in my life. I will have a cup maybe once or twice a month.
Chocolate is another matter. A lot of people report chocolate triggering migraines. But I LOVE chocolate. Dark, dark chocolate I can savor slowly. There was a time when it seemed to be the only indulgence consistently within my reach. So giving it up entirely felt like the last nail in the coffin of my joy. (Did I mention I love chocolate?)
The good news is, I didn't have to give it up. I made a bargain with myself. I get to eat chocolate, every day I want to, under the following parameters: 1) it's a modest amount, 2) it's only in the morning, when other people get their coffee or tea (since it has caffeine in it), and 3) I only get it when I am up and out of bed on time. The advantage of this approach is that, duh, I get to eat chocolate. Also, I am avoiding the upset to my sleep cycle I may experience if I have caffeine later in the day. And, not incidentally, it provides a terrific incentive to get out of bed in the morning. I have become a veritable early riser. I wake up, and right as I'm tempted to roll over and drift back into sleep, I remember: my Special Morning Treat is waiting for me. And I have to get up now in order to enjoy it. And next thing you know, I'm down in the kitchen, savoring some.
I've gone weeks without chocolate and not noticed a difference in my attacks, and some of my healthiest days have included it. So, for now, I am holding on to chocolate. (I pity the poor doctor who tries to take this away from me, too.)
Early on in my migraine journey, I realized that alcohol was a major trigger for me. So I quit drinking. It wasn't hard, though I had to learn other (better) ways to relax. Now, I have on two occasions in the last six months had half a glass of white wine without triggering a major attack. So maybe I can drink white wine in small quantities. But I don't really need to, and it still seems risky, so I generally prefer to abstain.
Eating and Drinking All the Time
In addition to the above, I find I do best when I eat regularly timed meals and never get too hungry. So I try to always have a nutritious, low-sugar snack at hand. Nuts, seeds, vegetables, and some fruits are all good for this and help hold me over until my next meal.
Same goes for a glass of water: dehydration is a reliable trigger for many people, including me. I drink a lot of the stuff.
Similarly, I find I sleep much better and am more likely to wake up healthy if I eat a high-fat snack right before lights out. Cheese, nuts, coconut milk (not coconut water, which is tasty but not high-fat) with carob, or a mini-portion of whatever I just had for dinner are good ways of achieving this.
Then when I wake up, usually ravenous, and dive straight into breakfast. I am an eating machine.
The Icing on the Whole-food, GF, Sugarless Cake
If all of this seems like a lot of rules to follow, it is. Shifting into this lifestyle was an enormous, difficult project with many setbacks, frustrations, and modifications along the way. I felt lonely and freakish much of the time. But what is great is that I did, finally, manage to make the shift, and now I have a lot less worry about whether I am going to trigger a migraine accidentally with something I eat. Also, I lost weight, I'm happy with my skin, my other parts are all operational, my long-term health prospects are good, and I have oodles of energy I didn't have before. So it was well worth it, and I'm not in any hurry to return to my old eating habits.
Rhythms of Light and Motion
As an animal, I respond to light and motion. Understanding how I respond best has helped me get off of Migraine Island.
Oh, To Be a Full-Time Hiker Again
In late 2011, I decided I needed something positive in my life to work toward that would help motivate me to keep healthier habits. I chose backpacking, because it also indulged my love of nature, adventure, and the outdoors.
I wasn't athletic or strong when I made this choice, but I threw myself into training and equipping myself for some serious hiking. Throughout that winter and spring, I pushed myself physically to get into shape. I began to go on longer and longer day hikes, and then overnight hikes, either with a friend or by myself.
Then I quit my job to thru-hike the John Muir Trail (JMT). This is widely considered to be one of the world's most glorious thru-hikes: over 200 miles stretching across the spine of California's Sierra Nevada mountain range. I walked, mostly by myself, from Yosemite Valley to the top of Mt. Whitney, the continental U.S.'s highest peak.
It was the best experience of my life. Stunning beauty surrounded me each and every day. It was three weeks of heaven.
(If you read Cheryl Stayed's "Wild," and are wondering where the JMT is relative to her adventure, it is the section of the Pacific Crest Trail — PCT — in California that she skipped due to heavy snowfall. Most of the JMT is above 10,000 feet in elevation; making it the highest stretch of the PCT. I was luckier: while snow was extremely heavy the year before my adventure, and California's drought followed close behind, the year I hiked the JMT had optimal snowpack and weather conditions for hiking. And no, her book didn't inspire me: I didn't read it until after my hike. But it was a good read, if grimace-worthy to a backpacker...she couldn't even lift her own pack when she started out? Really? Good grief.)
I continued to have migraine attacks — sometimes twice per week — all the way up until I started the JMT. I was far, far from sure that it was a good idea to attempt the hike, and even less sure that I would finish the whole thing. I went anyway. I needed to prove to myself that I would not spend the rest of my life cowering indoors. That my world was bigger than that. That I had only begun to live as largely as I aspired to.
Then, I had one, only one, migraine in the three weeks I was out there, mostly alone, in the wilderness. The attack itself was a new, and somehow beautiful, experience. I felt that in some, mysterious way, the natural world itself nurtured me back to health, and rapidly, at that.
I came back from my trip rejuvenated and hopeful and went straight back to work at a new job. It had a lot in common with my previous work: I spent hours each day at a computer, sitting at a desk, in an office with fluorescent lights and friendly people. I analyzed and wrote about complicated things. I endured a lot of bureaucracy and meetings.
This time, though, my health started to slide precipitously. At first, I thought it was just my body adjusting back to a more sedentary life. I tried to keep up my workout routine, but I wasn't successful. Before I knew it, the attacks were worse than ever, and I had a diagnosis of chronic migraine. After struggling for over a year, I reached a point where I simply could not imagine a future for myself maintaining the status quo of sitting in an office all day while my health was collapsing. So I decided to step away from that lifestyle and focus on my health and my writing.
Why am I telling you all this? Because, in some way, everything else I've written about migraine in these pages is simply a report on my efforts to replicate the success I had as a full-time backpacker, only in a way that can also accommodate greater social and community engagement, and that pesky little thing called a livelihood.
The Power of Light
There is an emerging field of science called chronobiology, which studies the natural rhythms of the body. I have a lot more to learn, but here's some of what I do know about it so far:
- Animals, including humans, are saturated with biological processes deeply tied to the rising and setting of the sun.
- These processes can be affected by exposure to other sources of light too, and can be "entrained" to mimic stable rhythms of light coming and going.
- In the absence of a consistent pattern of light, things in bodies can start to unravel.
Might this put a new spin on the label "light sensitive"?
Before exploring this further, let me say here that I've always had trouble with this term. Calling what I experience during the worst throws of migraine "light sensitivity" is kind of like telling burn victims they were feeling "fire sensitivity." I am "sensitive" to light during migraine in much the same way we are all "sensitive" to exploding organs, and the carving away of the skin. They all hurt in a way that the word "sensitive" really can't do justice to.
Backpackers sometimes talk about "hiker's midnight," which is basically sunset. After that, a thru-hiker often finds it impossible to stay awake for long. Part of this is fatigue, which can be profound after weeks of hiking all day. But I suspect it also has to do with the fact that when we are under the day-star all day, our bodies naturally want to follow it to bed.
When I was on the trail, I tended to pop wide awake at dawn, and fall asleep as soon as it got dark. Contrast this with my habit up to that point: NIGHT OWL. Since childhood, sluggish and irritable in the morning, which started for me as late as I could get away with.
No more. In recent months, for the first time in my life, other than when I was a full-time backpacker, I am a morning person. I still have trouble putting myself to bed at night, but I've figured out how to make it more likely I'll get there, and get to sleep.
When I don't, when I start to slide back to being a night owl, my health erodes. Now that I see the pattern, it is easier to motivate to go to bed. (The morning chocolate helps, too.)
I hasten to say here this is NOT a matter of virtue. The dominant culture in the U.S. has a bias in favor of morning people. There is this perception that they are somehow more moral, more industrious, more trustworthy than the rest of us. I think that's rot. I'm the same person I was before becoming a morning person, with the same strengths and weaknesses. I've always worked hard, and usually had good results.
However, in my case, getting up earlier has coincided with being much healthier overall. Being healthier does mean I'm more productive — not because I'm more virtuous, but because I'm less sick and thus more able to get things done.
Staying in Sync
Here is what I try to do to keep my circadian clock in sync, day after day:
I get out of bed shortly after I wake up in the morning.Even if it is too early. Laying around in bed seems to do funky things to my biorhythms. I try to avoid it if I can.
I get outside for at least twenty minutes in the morning.Sometimes this is a casual stroll when Sam takes the dog for a walk. Other times, I turn it into my daily cardio (see below). Either way, the point is that all the outdoor light is reinforcing my body's internal rhythms in a helpful way. I learned from chronobiologists that earlier exposure to light can shift the body's rhythms forward in time, e.g. if I'm outside much earlier than usual, I might get sleepier sooner that night and wake more easily at the same, early time the next morning. I keep this principle in mind.
I keep consistent sleep and wake times.This isn't always easy or even possible, but it is what I try to do. It helps if my sleep and wake times are wide enough apart that I can expect to get the full 8+ hours of sleep I need to feel strong.
I keep lights dim at night.This includes computer and other screens. I avoid stimulating, flashing lights like I might get if, say, I watch an action movie right before bed. If I am reading in bed before falling in sleep, I use a red-tinted bulb, which is easier on my migraine brain generally and also helps me relax into sleep.
Light Quality, or, My Achilles Heel
I like to think I have a very strong environmental ethic and take pains to live as sustainably as I can muster. So it is with great reluctance that I finally reached the following conclusion:
Before you write me off as a crazy eccentric, hear me out. I know this can sound silly. First of all, fluorescent lights have been around for a long time, and we haven't all suddenly become migraineurs. Secondly, not all fluorescent lights are the same. You've got the long skinny ones, the short twisty ones, the ones that nearly anyone can see flickering, the fancy, new ones...They all use slightly different technology, and it's a pretty diverse market.
I get all that. I get, too, that they "shouldn't" be my #1 enemy. And believe me, I don't want them to be. For one thing, they are everywhere now. Nearly all shops, restaurants, doctors' offices, and homes are fluorescent-lit, at least somewhere, if not everywhere. What's more, many, many digital devices have what is essentially fluorescent back-lighting.
This is, for me, one of the most isolating things about my migraine experience. The energy-saving, practical, trend-setting light source that has made the world a better place for so many, for ME has made it an obstacle course of landmines and booby traps. Really. That's how I've come to think about my navigation in the indoor world.
How could this be? I don't really know. Some people say that it is the flickering. Others say it is the fact that these lights tend to be on the blue end of the light spectrum, and that is harder on many migraine brains. I've read some technical explanations about how this is possible that leave me scratching my migrainous head. Some day, maybe I will learn enough about the physics of light to really be able to understand it. But until then, I am focused simply on avoiding these lights as best I can.
How do I know fluorescents are a trigger for me? The same way everybody else finds out about their migraine triggers: close observation over time, and a little experimentation. Actually, my partner Sam gets a lot of credit here. Migraines started to take over my life after I moved into a house where virtually all of the light fixtures had fluorescent bulbs in them. It hadn't even occurred to me to suspect them, but Sam did and started reading up on other peoples' experiences. Why didn't I do it myself? Because it hurt me too much to look at my computer screen. Why was that? Um...it was fluorescent back-lit.
Now I recognize that that mental buzzing sensation I get in certain lighting situations is not normal and signals the beginning of a migraine attack, unless I find a way to stop it. Sometimes, it feels a little like there is someone screaming wordlessly just out of my visual range — maybe in the next room over. I know that screeching sound is not aimed at me, and maybe I even know the person will be OK. No one around me seems bothered. But, still. It is unsettling for someone to be making such noises nearby. It's hard not to be distracted by it, uneasy, and a little worried you should maybe try to intervene in some way.
My sensitivity is, unfortunately, variable. I say unfortunately because it would be nice if for once, only once, something were simple about migraine. No such luck. I've noticed that not all fluorescent lights are equally bad for me, and I am more or less sensitive to them depending on what else is going on in my trigger and health profiles.
You See An Eccentric. I See the World Peacefully.
The most limiting aspect of my "allergy" to fluorescent lights is that it means I need to exert a degree of control over my environment that is fussy at its best and impossible at its worst. Here are some of the ways I exercise this control.
If I can visually see them flicker, I get the hell away.You know the ones: you can see them too. They probably even irritate you. Granted, I seem to notice flicker more than the average person, but the point is that what is a minor irritation to a person with a less sensitive brain is a major, major impediment to me being able even to think and communicate normally. Really. It can be that bad. It's like they are electrocuting my brain, which, given how migraine affects the electrical processes of the nervous system, is actually sort of what is happening. And that is before the headache phase kicks in.
When fluorescents are in a room, I gravitate toward a window.The natural light seems to help drown out the negative effects of the fluorescent light. However, I also am sensitive to glare, so this can backfire.
I am that weirdo who wears sunglasses indoors.Yep, that's me. It's not because I have a hangover or am a celebrity avoiding ravenous fans. It's because light in public indoor spaces is so very perilous for me.
I also wear hats and visors indoors.Granted, even on a good day my fashion sense is...questionable. But such matters are so trivial compared with my health. A brimmed hat can go a long way toward protecting me from a migraine attack.
Fans, shorting bulbs, and glare can also be culprits.The former two also can create flicker. Rapidly oscillating fans sometimes do this when they are in front of a light source; in other locations, they are fine. Glare is one of the reasons why clean, shiny, bright grocery stores can be really difficult for me. In addition to bad lighting, the glare bouncing off all those reflective surfaces can be triggering. Same goes for the reflective surfaces of cars while driving on sunny days.
Distance matters, so sometimes fading into a darker corner will be help enough.This may also be why I can usually tolerate the screens in movie theaters better than a TV at close range. Or maybe it's just because the source of the light is so different. I really don't know.
When all else fails, I will close and cover my eyes, or ask for the lights to go off.Even though it shouldn't, this embarrasses me and it takes an uncomfortable amount of self-advocacy to make this request. One former boss had the decency to flip off the overhead lights for me whenever I entered our conference room (which had a bank of windows on one side, unlike other parts of the office) — before I even had to ask. She also ignored office politics to secure me a private office where I could rely more heavily on natural lighting. Needless to say, I stuck around under her leadership as long as I could. But ultimately, my health forced me to leave, in part because it simply wasn't practicable to eliminate all my exposure to fluorescents in the course of the work day.
The Glowing Age
The above section described my challenges with room lighting. I follow additional precautions when it comes to using glowing screens. Thanks to the internet, digital devices matter more and more to modern life, and I want to be able to use them too.
I am extremely picky about the screens I use.It helps to be married to a really geeky partner who enjoys researching and acquiring new technologies. But the difference is so dramatic between a screen with back-lighting I tolerate well and back-lighting I tolerate poorly, that now when I fire up an old computer monitor, I can hardly believe I was able to use it at all. My current monitor is a BenQ model that allows you to dramatically reduce the intensity of blue light. The difference for me is palpable. I am amazed that most people can tolerate a "normal" blue light monitor just fine. It's the difference between me having to look immediately away from a screen, and being able to work on it fine for hours at a time.
I minimize the brightness of even my low-blue-light screen.In addition to fiddling with monitor controls for this outcome, I am currently typing this web page into a text editor I have adjusted so that it has soft yellow type against a dark gray background. For regular writing, I use LibreOffice and create a similar color configuation of soft gray on dark gray. The default background of my monitor screen is black, and all windows that open on my computer screen default to a dark gray with lighter gray text.
When browsing, I frequently use the NoSquint add-on for the Firefox browser to tweak the color settings of individual web sites when I'm reading online. This isn't about me being precious. It's more about whether I can use some websites at all. I use an Ubuntu operating system and a Firefox browser for my work. I don't know easy it is now to make these modifications with other systems and applications. I do know that web accessibility standards suggest my class of problems are not unique.
I frequently wear ugly orange-lensed glasses while working, to limit the light intensity and blue-light exposure even further.Sigh. I guess my candidacy for Sexiest Woman Alive is officially DOA. At least my hubby says I'm cute.
Whenever I can, I get my reading done on paper or a no-black-light e-reader.It has significant limitations, particularly with respect to its touch screen, but the Onyx Boox Lynx offers an e-reader with optional backlight that runs an Android operating system. Combined with a bluetooth keyboard, it has enabled me to stay digital during times I would otherwise be completely shut out of the Internet. I also use a typewriter, later scanning the pages to PDF and then converting them to text. And much of what I write is by hand.
I do wonder sometimes whether we wouldn't all be better off with less challenging lighting in our midst. Even before I started getting migraine attacks, I noticed my energy would fade a lot faster under fluorescents or in front of a screen, than in other contexts. In one dramatic example, I went out of my way to study for the bar exam using an independent study course with recorded lectures: this way I could spend my days reading in Golden Gate Park while all of my law school classmates, so far as I knew, were cramming together in a vast, fluorescent-lit basement. (Also, my program was cheaper.) Looking back, I marvel that I made such a risky decision (which, fortunately, paid off). I just had this intuition that I would do better on my own surrounded by nature, though I couldn't have really told you why.
Lately, there have been a wider variety of energy efficient bulbs available on the market. We're still experimenting here in my household, but there is cause for optimism. The broader the selection of bulbs and screens, the better for people like me — and maybe everyone else, too.
The Body Loves to Move
Another thing that stands out about my JMT thru-hiking experience is, duh, I got a lot of exercise. I averaged about thirteen miles of steep, high-altitude terrain, each day.
Exercise provides many health benefits, including the release of natural pain-killers in the body. So, as part of my recovery from chronic migraine, I prioritized getting back into shape as another way to mimic that experience.
Needless to say, being sick most of the time made it very hard, if not impossible, to keep up a regular workout routine. Migraine has a way of making every. Single. Thing. Hurt. Too often, movement of any kind can be excrutiating, nauseating, and generally ill-advised.
It was probably a chicken-and-egg situation: not exercising is bad for my body, so I got sick; being sick is bad for exercise, so I got out of shape. Ultimately, it didn't really matter which caused which for me. I had to find a way to break the cycle.
Unfortunately, severe and chronic migraine changed my body in ways I had never anticipated. Like many people, I had a long history of painful knots in the soft tissues of my neck and shoulders. Somewhere along the way, I began to notice that these knots had become part of my migraine experience. It is another chicken-and-egg situation: sometimes it seemed the pain started in the knots, and other times it seemed the pain only spread to the knots after starting as a headache. Either way, the knots hurt.
The situation got dire when I started to notice than nearly any energetic use of my arms or back seemed to light the knots on fire, and this became a feature of Migraine Island. This is not the situation you want when you are trying to get more exercise. I was literally immobilized by pain.
I tried various home remedies, including self-administered trigger-point therapy, occasional massages, and upping my magnesium intake, but eventually it reached the point where I knew I needed help. So I started going to physical therapy.
Physical Therapy = Awesome
Happily, I found a very experienced, knowledgeable, and kind physical therapist, Kate Nickerson of Quinn Orthopedic Physical Therapy. She was willing and able to accommodate both my sensitivity to fluorescent lights and my sensory sensitivity generally, especially during those days I was well enough to move around but not at 100%.
She made an observation that turned out to be very important: my posture was terrible. This came as a surprise to me. Over the years, I had received many comments that I had extremely good posture. (I spent a lot of time in ballet classes as a little girl.) I had taken for granted this was the way I still carried myself. But her observation prompted me to take a hard look at myself.
When I did, I saw somebody who had come to spend many of her days literally cowering in pain. As in, hunching over myself, as animals do who are trying to protect their vulnerabilities. What I had assumed was still good posture had deteriorated into something more Quasimodo-like.
Perhaps not coincidentally, carrying a backpack (correctly) is the perfect antidote to walking as a hunchback. You keep most of the wait on your hips with the strap that goes around your waist. Then, the straps you use to stabilize the pack over your shoulders essentially pull your shoulders back into an upright posture. (If you are hunched over while hiking, you might want to consider lightening your pack or building your core strength to support it better, or, more likely, both.)
So I have to wonder, again, if doing a lot of backpacking might have been one of the things that kept my knots from being so inflamed while I was pushing myself physically.
Additionally, Kate noticed that my C-6 vertebra had kind of sunk down behind my C-7 vertebra. In other words, my neck was sort of collapsing into my shoulders. My C-7 vertebra protruded more than it should as a result. I don't know how much of this is genetic, but we set out to fix it using gentle techniques.
I credit Kate with getting me to the place where I can exercise again without fear. I am still rebuilding my strength, and I still have pain and tension in my neck and shoulders, but it keeps diminishing as I stick to the program of stretching, exercising, and hands-on work.
My Recovery Routine
What does exercise look like for me during recovery from chronic migraine? Not the way it used to. Someday, it would be amazing to get to throw myself into stronger, bolder movement, like the African dance and and climbing I've enjoyed in the past, but I'm not there yet. However, I am settling into patterns of movement and activity that I believe I can sustain indefinitely. Here is what that looks like:
I pace myself.I used to have this mentality that anything worth doing, was worth doing to the max. That tended to mean spending every ounce of my strength and reserve, giving whatever I had to get it done.
This method doesn't work for chronic illness (or, maybe, life). Pacing does. I have to pace myself so that whatever I achieve today will leave strength for tomorrow. This goes beyond exercise, but exercise is an obvious example of when I really must stick to the principle. Because now, deep fatigue makes me far more vulnerable to an attack.
I don't sit or concentrate on one thing for extended periods of time.I'm that highly-focused person who, left on her own, will work straight-through from morning to night without a break, forgetting even to eat, and then pay dearly for it. I've never had a short attention span (except when overcaffeinated).
When I'm concentrating on something, I use a timer that goes off every twenty minutes. (See Clockwork Tomato, above.) Then I have to step physically away from it and stretch or move about.
I also use a standing desk — first, one I cobbled together from furniture I already had. More recently, I invested in a high-quality hydraulic one, which I can easily move up and down to preset heights according to my energy level. The key for me is standing, instead of sitting, whenever I can. I aim to frequently change the position of my body, to give it a break from whatever position I was holding it in.
Every twenty minutes might seem like too many interruptions, and I'll admit that I sometimes resent them. But, in my case at least, these interruptions have become part of my workflow and actually serve to energize me, enabling me to get more done. These breaks also are when I tend to get my best ideas.
All told, sitting and prolonged staring are things I try to do as little as possible. Feeling healthy makes any minor inconvenience totally worth it.
I sprinkle my strength-training and stretching activities throughout the day.Granted, this isn't the best way to build endurance, but by exercising in small spurts throughout the day, I eliminate the excuses that have kept me from exercising at all. "I don't have time right now," sounds sillier when the lunges I'm avoiding only take two minutes. "I don't have the energy for a workout" becomes less relevant when the task before me is simply to do a calf stretch. Also, I believe there is inherent value in simply moving my body often. It helps maintain consistent energy throughout the day.
I alternate arm and leg days, so I can strength-train almost every day.Yep, almost every day. But it doesn't feel burdensome because I do a little here, a little there, pacing myself as I go.
I don't do it if it hurts where I am most vulnerable.That includes my head and the trigger points in my neck and shoulders. I also have an old wrist injury that can flare up if I'm not careful. Sometimes, I just need to change positions, or wait for a better time. But making this promise to myself helps me relax a little and trust that I can grow stronger without triggering an attack.
I get at least a little cardio every day.On weaker days, I might only manage a slow stroll. Increasingly, I take a brisk walk or bike ride, or dance around the house. It only counts as cardio if I can feel my heart pumping harder and I sweat a little. I aim for at least twenty minutes.
I skip the gym and use home exercise equipment.My difficulty with fluorescent lighting makes most gym experiences tricky. Also, getting to the gym can be an obstacle. So a few years ago, I started adapting what I had around the home, and investing in additional tools I can easily use. Here is what I use virtually every day, starting with the cheapest:
- A floor. A great place for stretching, core/abdominal work, and just about everything else.
- A wall. I use this for modified push-ups, wall sits, and stretching my feet, calves, and neck.
- Stairs. I've used the stairs in my home for calf raises and stretches, modified lunges, and cardio. (A great conditioning exercise for backpacking is to fill up your pack with more weight than you plan to carry, using water jugs for example, and then mosey on up and down the stairs until you can't really do it safely anymore.)
- Stretchy bands or bungies. I currently use these to strengthen my shoulders and back. The upside of bands is they are more versatile than handheld weights, which I've also used, but the downside is that you don't necessarily know how much resistance you are using, and they don't last as long.
- Foam roller for deep, fantastic stretches. Also useful for balance work.
- Bosu Ball. This is basically a big ball, cut in half, on a flat, stable stand. There are a zillion things you can do with this piece of equipment, including:
- Balance work (valuable on rocky, uneven trails!)
- Core work (including abdominal strength)
- Deeper stretches (e.g. quad stretches)
- Cardio (dancing on a Bosu Ball is a fabulous workout)
- Making traditional exercises, like squats and lunges, more challenging and interesting.
- A crazy dog. Yep, a dog. In addition to having a nearly limitless drive and need for walks and bike rides, our rescued mongrel, like many, excels at tug-of-war and fetch and straining at her leash after squirrels. In other words, she is a ready-made cardio workout and exercises my core, shoulders, and arms. She is the most expensive thing on this list, no doubt about it, but she pays Sam and I back many times over with love, joy, endless entertainment, and warmer feet in the winter.
Put it all together, and you've got a life full of energy and motion. I'm basically always sore somewhere, but that's OK. My muscle tone is gradually coming back, and I'm starting to dream that maybe someday, I'll get to have a new backpacking adventure
An important part of health and movement for most of us is our sexual health. Hitting the "reset" button with orgasm can be a fabulous way to give all internal systems a boost. Sex does profound things in our many parts, including our brains. It releases those powerful natural chemicals that help kill pain and elevate mood. Also, it's a good way to affirm a partnership. Ain't love grand?
Migraine can definitely affect a sexual partnership. The sick person can be worried about getting sicker because of the exertion, and the not-sick person can be worried about hurting the sick person. Worry isn't good for sex. But a generous spirit, outrageously candid communication, and a willingness to adjust course as needed are useful tools in navigating these challenges.
For women in particular, sexual hormones can play a major role in migraine attacks. So I keep track of my cycle along with everything else on my paper health log.
Medicine and Treatments
Triptans, antiseizure meds, blood pressure meds, antidepressants, antinausea meds, NSAIDs, Botox, trigger point injections, the Cefaly device, biofeedback, pain management classes, and various nutritional supplements including Migravent: doctors have prescribed all of these to me, and more, and I have tried nearly everything they've told me to try. (Understand, this is only a list of things I've been prescribed; I've pursued even more all on my own.) The only things I've refused to try outright have been opioids and barbiturates, because there is a pretty solid body of evidence that these habit-forming substances tend to be bad news for migraineurs.
Some of these treatments were helpful, like the triptans, the antinausea medicine ondansetron, and the NSAID diclofenac (generic, or Cambia, which is more expensive but is more effective during mild nausea). I still turn to them from time to time.
Unfortunately, none of the prophylaxis (preventative) meds seemed to work for me. The most dramatic example of them not working was my attempt to adjust to topiramate, an antiseizure medication often prescribed for chronic migraine. I gather it works for some people, but I simply could not tolerate it at anything approaching an effective dose, in spite of over a month of trying. Meanwhile, I continued not only to have attacks, but Sam took to calling me "Zombie Brenna" when I could hardly find my way out of bed and was basically a sluggish dullard for those several weeks.
My Most Pivotal Moment
The single most pivotal moment in my recovery from chronic migraine was the day last year I finally turned to one of the oldest known migraine treatments. It has been around for millenia, as been prescribed across continents, and was doctors' first choice for migraine treatment in this country until the middle of last century, when it was rashly criminalized.
I had avoided it for a long time because of stigma, because of its legal status, and because I simply did not believe its use could really be anything other than recreational. Then, in my own most desperate and darkest hour, at the urging of my worried husband, I finally turned to medical cannabis. Yes, marijuana. Weed.
The first thing I noticed about cannabis' effect on my migraines is that the light sensitivity that had defined my migraine experience for so long became almost a non-issue. I cannot overstate how radically this impacted my day to day life. Now, during all but the most severe migraine attacks, I can safely, healthfully, and reliably work. With a light on. Like, seeing. It is a total game-changer for me.
The second thing I noticed is that even when I am in the headache phase of an attack, the pain is vastly diminished. It's still a migraine, I am still tender in ways I am not at other times, I still have a headache, but it just isn't that big a deal. Nausea is hardly a factor. Together with the other measures I take to safeguard my health during these times, like keeping lighting and noise down, getting extra rest, and being generally gentle and careful with myself, cannabis has made it possible for me to function during migraine in ways I never dreamed I could.
Finally, the most encouraging sign is that my headaches are becoming not only less severe, but less frequent. I now face a future where the prospect of putting chronic migraine permanently behind me — a lasting escape from Migraine Island — seems not only possible, but likely, so long as I stick to the habits I've described in these pages. A year ago, I was beside myself with frustration and rapidly diminishing hope. Today, I am hopeful, and I have good reason to be. I actually believe it is realistic that as I slowly recover, the chronic migraines will eventually become episodic again, and may some day be only rare visitors, easily managed, an occasional inconvenience. It is an amazing place to be.
Old Medicine, New Understanding
It turns out that cannabis is a remarkable plant that modern scientists are studying with great enthusiasm all over the world. I feel like a baby beginner in the world of medical cannabis use — I'm about six months in as I write this — and it would be premature for me to trumpet specific strains and doses and methods of use. I'm still experimenting. But here is what I feel comfortable saying so far:
Getting Stoned is OptionalUsing medical marijuana is different from getting stoned. The entire time I have worked on this website, I have done so with low doses of cannabis in my system, enough to deliver its neuroprotective and pain management properties, but not enough to impair my judgment, motor skills, or mental processing. I'm not giggling or munching or saying "dude."
Many Treatments in One
Cannabis is actually comprised of many medicinal compounds. These are called cannabinoids and terpenes, and bundled together they make one powerful plant. The two that get the most attention are THC, which is psychoactive (gets you "high"), and CBD (cannabidiol), which is not. THC is effective for pain management for many different medical conditions, and also combats nausea. CBD has strong anti-inflammatory properties. Both of these uses are valuable to me as a chronic migraineur, so I pay attention to the availability of both when I go to the local dispensary to buy my medicine. Additionally, there is a synergistic relationship between THC and CBD: higher CBD to THC ratios in a plant seem to offset the psychoactivity associated with THC. In other words, you tend to get less "high" from THC when there is more CBD in your system. On the other hand, too much CBD reportedly can cause headaches, all on its own. So it is a balancing act.
No Skunks Here.
You don't have to smoke weed to get its medicinal effects. So far, I've been take it orally: in a low-dose sublingual spray, or as an oil or tincture in food or drink. I also use a salve that provides excellent short-term pain relief when rubbed into my scalp during headache, or the knots of my shoulders and back when those are flaring up. I would like to try vaping, but I'm not quite there yet. (I did smoke a joint with friends maybe a handful of times recreationally in my twenties, before the migraines started. It wasn't a habit I ever got into. It is pretty smelly stuff, is legally sketchy, and inhaling smoke of any kind has its risks. That's not to say it wasn't fun.)
Respect and Caution.
Cannabis is a powerful drug, and accordingly, deserves both respect and caution. Ever noticed that just about anything worth doing can be done abusively, too? And, of course, what works for one person doesn't necessarily work for another.
Although the U.S. government has spent a lot of money demonizing cannabis (and destroying lives and communities in the process), most of the charges against the plant simply don't stick on closer examination. It's simply not as dangerous as we have been told. This is one reason the legalization movement has picked up so much momentum in recent years.
All the same, I doubt it is appropriate for young people whose bodies are still developing, unless they face dire medical situations. Large doses can impair judgment and lead to bad decision-making. And there is a risk of dependency, though it is minute compared to drugs like alcohol and nicotine, or even the many over-the-counter medicines marketed for migraine treatment, which often cause "rebound" or overuse headaches.
I've been encouraged by people at my dispensary to take breaks from cannabis every few weeks to let all the cannabinoids work their way out of my system, in order to avoid developing a tolerance. Taking a break is also a good way to find out whether I really still need the medicine to prevent migraines. (So far, I do.)
Innate to Us
Our bodies have "endocannabinoid systems" that are innately receptive to cannabinoids, because we make some of them ourselves! That's right: we produce endocannabinoids in our bodies. They are involved in many biological processes that help keep things in our bodies on an even keel. You hear the word "homeostasis" to describe this: keeping us from veering far from our baseline of balanced health. In the case of migraine, I am particularly interested in the neuroprotective qualities of cannabinoids: they appear to actually help insulate some of our brain structures and processes from harm.
This is why cannabis has medicinal value: its components are already in us, in differing quantities. There is even a theory among some scientists that conditions like migraine actually result from a cannabinoid deficiency. That is, more pot could help prevent disease. If that sounds crazy to you, you can understand why it would take me years of pain to get around to trying this particular drug. It was literally my last resort. But what if much of the agony we chronically ill people go through happens just because we failed to get enough marijuana into us to modulate our systems? Kind of shifts the conversation, right? (Note that I don't know whether this endocannaboid deficiency theory is true. But I do know I can read about it in medical journals, and it has some traction in the scientific community.)
This may be one of the reasons that different medical conditions seem to benefit more or less from different strains of cannabis, and in radically different quantities for different people. Since there are dozens of different substances in cannabis that have a biological effect on us, the different groupings of these substances, which define the different strains, can yield different results. For example, some strains are supposed to work better for neuropathic pain, some for depression, some for epilepsy, some for anxiety, some for cancer pain, some for fybromyalgia, etc. I know hardly anything about these nuances. But it's something I will probably explore if cannabis remains a fixture in my life.
Purity is an Issue.
These health benefits can be negated if dangerous contaminates are introduced to cannabis during its growth or processing. These can include pesticides and industrial chemicals that may be toxic, especially when breathed into the lungs during smoking. This is one reason why organic grows from a reputable source are the best way to go.
Such toxins are hard to identify by the patient without laboratory analysis. My dispensary says that all the cannabis it provides has had a full lab work-up to detect such contaminants. I believe them, but it's something I keep in mind and one of several reasons I hope I am never forced to buy my medicine in the street market.
I Need My Government's Help.
As a vulnerable, chronically sick person, I could really use my government's help.
It's kind of like this: imagine you have been sick for years, seemingly beyond the ability of doctors to help, and one day you find out there is this entirely separate pharmacy you had never known existed before. You hear a rumor that it is full of medications that might safely help you. But your doctor won't go near the place, and can't or won't answer your questions about it. Also, your government has a track record of persecuting people who access this medicine.
You have a choice between also turning a blind eye to the existence of this pharmacy, or trying to access its medicines, that might just restore you to health. What do you do?
If you are me, desperate and despairing as I was only six months ago, you bite the bullet and go there yourself. You cast your lot with many other sick people, listening to their stories of healing, and learning from them, too. You hope their collective wisdom about what medicine to take, how much, when, and how, will be useful. You hope it is accurate information, although you have no real way of knowing for sure, short of trying it for yourself.
And what does it mean when one of the most effective medicines for some diseases are almost entirely outside the orbit of the medical establishment? It means that even good doctors lose relevance to their patients' healing. And, it means that the scientific rigor doctors are trained to provide is omitted from the treatment process. Having no other choice, we patients are left to proceed with self-treatment, scanning the pages of medical journals for clues we can scarcely understand.
Government should discourage, not cause, this situation. I would like my government to get out of the way, stop persecuting people for providing or using or prescribing safe, effective medicine, and help us get it the right way instead. Help us better understand and control for issues of dosage, strain efficacy, purity and availability of medicine, and safety of use. Remove needless obstacles and correct the ignorance former officials have promulgated.
Help us get the right kind of medicine for our bodies, working with, not against, the amazing network of providers who have weathered needless persecution, including waves of criminal prosecution.
I have a prescription in a state where cannabis' medical use is permitted, but it's still harder than it should be to navigate treatment. My health insurance does not cover this safest, most effective medicine that I've found for my condition. (Even though it is cheaper than many other, less effective therapies.) I should be able to get on an airplane with it, just like diabetics have their insulin, anxious people have their Ativan, and drinkers have their alcohol. And we patients should never have to live in fear that laws still on the books will be enlivened again by politicians willing to stoke hysteria and fear for the sake of their ambition.
Finally, My Hard Work Can Pay Off
The single most effective treatment I have found for my migraines, with no runner-up even close from the field of the twenty or so I've been prescribed, is marijuana. It not only dramatically diminishes the severity of attacks, but it appears to be helping to prevent them, too.
Many other treatments and practices are helpful and even necessary for me, as I've outlined in these pages. But it took the relief from my acutest symptoms that only marijuana has been able to provide, in order for the beneficial effects of everything else I'm doing for my body to fully kick in.
Marijuana won't make my muscles stronger or my posture better or keep me fully nourished, rested, and energized. But it has made all of the effort I have put into self-care finally, finally start to pay off.
Many other treatments can be helpful for migraine, according to both science and anecdote. Here are some I've tried. Some have helped me, and some have not.
Meditation and Mindfulness
Meditation and other mindfulness practices are very valuable to me now, but I resisted them for a long time. The reason is that I did not think spriritual enlightenment was the answer to my physical problem. Sometimes, well-meaning but ultimately uninformed people believe and communicate that a health problem is "all in your head" and that changing your mindset will eradicate the disease.
I knew myself well enough to know my disease was not a function of some spiritual or emotional deficit, and I resented the implication. It can come across as anti-science, judgmental, and victim-blaming. I may not be a great person, but I'm pretty sure all kinds, including both saints and villains, get migraines.
Similarly, I had a track record of performing quite well in stressful situations, such as the California bar exam, work as a poverty lawyer, and round-the-clock campaign work for a member of Congress. Throughout all of these seasons, I did not have migraines. So when I heard people equate migraine headaches with poor stress-management, I struggled to not take offense and sometimes lost that battle. I knew how to handle stress just fine, thank you very much.
It didn't help that by far the most stressful experience of my life has been sliding into chronic migraine hell. Only those with comparably serious chronic illness can appreciate what reserves of interior strength it takes to keep moving forward in life when you are very sick, day after day, with no prospect of relief on the horizon. I was a young woman, facing the possibility of the rest of my life in the throws of pain and neurologic disability, my dreams dashed, my hope slipping away.
So when I heard people suggesting my approach to stress was what was causing migraines, it was everything I could do not to scream the objection that migraines were the CAUSE, not the effect, of almost all of the stress in my life.
The truth is, migraine can and has struck me in my happiest, my most enlightened, my most relaxed, my saddest, and my most stressed out moments, and many of the moments in between.
It was the scientific argument for meditation that changed my mind. I needed to hear someone (OK, maybe several someones) say clearly that the reason it was worth doing had nothing to do with the state of my soul or the condition of my character. Nothing, at all. It is just another kind of medicine, no more, no less. It is a medicine you deliver to yourself by promoting certain kinds of activity in the brain and central nervous system. Once I understood that, I could embrace these practices, and even find them enjoyable.
Meditation is valuable in the migraine struggle, not because it makes you a better person, which it might, and not because it changes your personality, though it might do that too. It is valuable because it helps rewire your brain in ways that buffer it against migraine. Other, more knowledgeable people have written extensively about this, so I won't say more here. But I've come to view meditation much like I view physical exercise: it helps to keep me strong, to give me a little bit of a better edge for my health and against my disease. It's not a cure-all, or a sign of virtue, but it is a valuable tool for health maintenance.
Massage and Acupuncture
Massage has been very helpful to my pain management. I don't mean a relaxing massage like you might think of from a spa; I'm talking massage that gets deep into the soft tissues of my neck and back to restore blood flow to muscles that have been toxically tight for a long time. These kinds of massages can actually be painful and even leave bruises, but at their best, they have been as effective for the temporary relief of some kinds of pain as any other treatment I have tried. Different massage therapists have different techniques: I gravitate towards the ones that are familiar with trigger point therapy, Rolfing, acupressure, or other deep-tissue techniques. Conversely, I have politely terminated massages where the practitioner did not have good intuition as to what my body needed. I have little tolerance for "fluff" massages when I am in pain.
Some people swear by acupuncture. I have tried both scalp acupuncture and acupuncture on other parts of the body. The latter I did for several weeks. I did not notice a benefit. I also took herbs given me by the practitioner with no noticeable benefit. It also involved frequent appointments that I had difficulty keeping at the time due to migraine.
The Cefaly Device
My headache specialist prescribed this bizarre device. Basically, it's like a little tiara you wear across your scalp that electrocutes you. Yep, you read that right. It's a small electrical current, powered only by two AA batteries, so it's not as big a deal as it sounds, but still, it's hard not to notice when you're getting zapped.
At first, it hurt and felt really weird. It put me in a minor altered state, almost like I imagine hypnosis to be. But on Migraine Island, we try many strange things, and the idea behind the FDA-approved device makes a kind of sense: by zapping yourself frequently over your trigeminal nerve, the nerve becomes less sensitive. A less sensitive trigeminal nerve could be one that is less likely to feel migraine pain. Besides, it's not like it hurt as much as migraine.
Over time, I did notice that the device hurt less and less, and was less and less distracting. For example, I can now enjoy reading while wearing it. Also, on more than one occasion, using it during a mild headache helped lessen the headache pain. However, I was not able to tolerate it during more severe attacks.
I would still use the device except that after a few months of use, it seems to have developed a short. I need to send it back to the manufacturer and see what they will do with it.
My doctor told me during my last appointment that the current thinking is that it could take five months of use for it to really work its magic. The verdict is out for me whether it is having a significant effect, but I am willing to keep at it.
Botox, or How My Poisoning Went
Some people swear by Botox for chronic migraines, and it is so heavily marketed that I can hardly visit the internet without an ad telling me I should use Botox for one reason or another.
As you may know, it is a series of 31 or so injections of a neurotoxin, aka POISON, into your face, scalp and neck. The general idea is that by temporarily paralyzing yourself in these places, they can't create headache pain. Then, when you stop being paralyzed a few weeks later, you get another round of injections. If this sounds a little crazy to you, we are on the same page.
Like so many things related to migraine, this did not deter me. I was desperate and highly credible doctors told me to give it a go, so I did. Unfortunately, my appointment was on a day when I already had a migraine. But I was determined to be tough about it. I had done a lot of needles during acupuncture, I figured I would be fine. Besides, what was the point of rescheduling when I would probably just have another headache the next time, too?
Sam drove me to the clinic and, after asking the nurse to turn off all the lights in the examination room, we awaited my fate.
Here's a tip: don't get Botox while you have a headache.
The doctor could see I was in a bad way, but I insisted we get it over with. She kicked Sam out of the room, mumbling something about how it might be upsetting for him to watch. It was the right thing to do. I was hyperventilating with pain by the time the doctor finished, and bleeding in places, and what had been a migraine that was moderate enough that I could still walk swiftly became one of the worst attacks of my life.
When I recovered a few days later, I noticed a little facial paralysis here and there, but no effect on my subsequent migraine experience.
Since then, I've been encouraged by my doctor to give it another go. Although having a migraine during Botox administration is not supposed to impact its efficacy, I guess occasionally it can start working only after the second, or even third, time around.
I'm not in a hurry to try it again, especially since I found a medicine that is both effective and nontoxic.
Strong evidence supports the potential efficacy of some nutritional supplements for some people who battle migraine. These include the herb butterbur, the vitamin B-2 (riboflavin), and the mineral magnesium. I've tried all of these, and others including feverfew and CoQ10. The only one that had a noticable effect for me is magnesium. I can believe the others are helpful for some; they just didn't seem to help me.
Magnesium is a mineral your body uses in relatively large quantities, and it plays a vital role in getting muscles to relax after they've been tensed. When I notice persistent muscle tension or have exerted myself more than usual, I will sip on a glass of magnesium beverage in the evening. I try not to do it in competition with a meal because it can hinder the absorption of other minerals. This sometimes helps me to relax and sleep more restfully. (Magnesium is also known for its laxative effect; watch your dose!)
Even though I cannot say they've made a difference for me, I am in the habit of taking vitamin D, a multi-B-vitamin supplement, and more recently a supplement with probiotics and nutritional enzymes.
I started taking vitamin D after my bloodwork last year evidenced a vitamin D deficiency — no surprise since sunlight is a primary source and I was spending much of my time cowering in the dark.
The B vitamins are essential for the health of the central nervous system, and what you don't absorb you just excrete in your urine. So taking one makes me feel like I'm covering all the bases.
The probiotics and such are all the rage right now in some health circles. I'm not sure the fad will persist, but since science keeps learning very interesting things about gut fauna (the micro-organisms, including probiotics, that live in our digestive tracts and work symbiotically with our bodies to nourish us), I figure I might as well stick with it for a while.
In every case, I use ConsumerLab.com to help me choose which supplements to buy. For an annual fee, you can access extensive reports that explain the results of independent lab testing of different brands' products, and also summarize the current scientific literature on the efficacy of their ingredients. The market for supplements is mostly unregulated, and from time to time toxic substances like lead and arsenic show up in these products. A watchdog like ConsumerLab helps protect consumers like me.
As I detailed in The Rules, migraine is a Head Game. Figuring out how to navigate the disease — especially when it knocks you off your feet again, and again, and again, seemingly every time you try to get back on them — can require enormous mental strength and resilience. Here are some of the ways I work every day to keep my head game strong.
As a younger adult, I worked too hard and played too little. I am committed to not making that mistake again.
I define play as anything that makes me feel bouncy and energized and expansive inside. It is a very broad category of activities that I can adjust to fit my health condition during all but my very worst days. My favorite forms of play involve words and wilderness and art. Games are fun, too.
Play is so important because it is a portal to our other selves: the ones where the challenges of the present moment fade from view, however temporarily. It is escapism, and it also is a way we discover possibilities we either forgot about or never knew before. As a working creative, play is intrinsic to what I do.
For migraine, I especially need play because there is so much hardship and suffering lurking in the disease. Sometimes just watching someone else play is enough. It reminds me that life can always have more than dimension, no matter how trapped I feel.
Meaningful work is very important to my sanity. I always knew this about myself, but my dog taught me even more about it. When my dog goes too long without a job to do, she goes extra crazy. We've lost furniture, drapes, and clothing to this phenomenon.
As frustrating as her destruction can be, there's really no point in getting angry with her about it. She is wired to work, eager for direction, craving Importance. And it is our responsibility to get her needs met, since we humans separated our pets from their wild ancestors, who unlike our dog, can meet their own needs.
Much like my dog, when I don't have a meaningful project to work on, I get antsy and, if I'm not careful, self-destructive. I'm not saying this is a good thing; it just is. In my case, a meaningful project is one that has a social impact consistent with my values, and is challenging enough to be interesting but not so hard that I can't achieve success.
A little over a year ago, I had to take a step away from my work to focus on my health. This filled me with a kind of anxiety I had not experienced before: but, but, what will I do? Even though the answer was obvious — I will work at getting healthier, instead — it didn't seem to be enough. I really struggled with it. I was like my dog when she got spayed. In her will to do, she tore off the very cone around her neck that was meant to protect her from herself.
Happily, I am again engaged in meaningful work and it isn't costing me my health. But I learned something along the way that signals an opportunity for personal growth. I could grow in contentment, in needing less busyness to be at peace.
Let me just say up front that I am not good at this. Neither is my wonderful partner. We are both people who spend a lot of time chasing ideas in our heads, and don't always notice the debris we've accumulated around us in the process. In the last year, we've been trying to have people over more often, in part because the fear of embarrassment from a messy house is a great motivator to clean. Ugly, but true.
I think the focus on keeping house can be distinctly anti-feminist: women tend to be held accountable for such things in a way that is really not fair. Just because I was born with ladyparts doesn't mean I can be entrusted with a scrub brush. There is actually zero connection between those two things. For this reason, my housekeeping aspirations remain pretty modest overall.
At the same time, I notice that my migraine brain REALLY dislikes clutter. Making decisions is so very hard for me during migraine attacks, and navigating a houseful of clutter is basically an extremely long list of decisions about what to pay attention to and what to ignore. So over the course of the last year I've been trying to be more diligent about reducing clutter.
This takes cooperation, and it hasn't been the easiest thing in our partnership. I fail at keeping up my end of the deal quite a bit, but as time progresses and we both work on it, I can see that the house as a whole is looking a little better, and maintaining it is less difficult.
It helps to do some cleaning and decluttering every day to keep the mess-monsters away. This is one of the areas where HabitRPG has been very helpful.
I'm not going to be the person that tells you everything will work out if only you stay positive. I think that is hogwash. Let's look at all the injustice and hardship in the world. Do we really think that all the millions or even billions of people without access to adequate nutrition, education, or safe homes could change their situation with just a little positivity? I don't think that. I think they can't wish into existence food, schools, and shelter. And I think it's irresponsible to suggest they can.
At the same time, it is true that sometimes perspective can make a big difference. Just like I take a multi-B-vitamin to cover all the bases, and skipped that dessert last time I went out to eat, and do my physical therapy as diligently as I can, I choose positivity as something that can have a net beneficial effect on my health. I'm not religious or dogmatic about it, and I'm certainly not always successful. But it is something I do for myself, to help my body in its struggle.
Truthfully, I often need a cheerleading squad all the time shouting "You can do this. You can do this. You will find a way through." But due to practical considerations, this squad must live mostly in my own head. Along with migraine. (It's a little crowded in here.)
Here are some of the cheers my private squad has come up with:
- I made a little banner that hangs near my desk. It literally says: YOU CAN DO THIS.
- When I read or hear something that inspires me, I try to write it down on a little slip of paper. I put all of these little slips in a box, and draw a few to read each day.
- Music has a strong influence on my mood. So I avoid listening to tunes that bring me down.
- Some relationships are not positive. I try to limit contact and protect myself from their damage.
- When I catch myself comparing myself to somebody in an envious way, I ask: what does this mean about my self-care? What do I really want that they have. It turns out it's usually not the superficial stuff. When, for example, I feel envious of other lawyers of my generation who have really found their stride, I can usually recognize that the thing I envy is not the legal career which, after all, I stepped back from even before I got sick. It is the sense of satisfaction they exude in a difficult job well done. And that is something that is still available to me.
- I have mementos from positive ways my life has touched others. I turn to these from time to time to help me remember it hasn't all been in vain.
- I figure out a way to get laughing. Laughter, laughter, laughter. Up, down, all around. Laughter is wonderful. It truly is fantastic medicine.
A Partner's Perspective
More Migraine Island!
- The Rules on Migraine Island
What we can expect while we're stuck here.
- Life in the Shadows
Ever wondered how living under siege *really* feels for someone else?
- Tending the Body, Tending the Mind
Migraine can be transformative. It's even possible for that transformation to be positive.
- A Partner's Perspective
...or, Wait, She's Married Through All of This??
- Hope for the Future
How do we move forward from here?