Chronic Migraine makes me feel like Dr. Jekyll and Mr. Hyde. I am two people living in the same tired body. The pull into the pain and madness of Hyde has been strong this winter, as my body and mind weathered migraine attack after migraine attack – some lasting as long as 6 days.
This winter has been a winter of snow, a winter of change, a winter of adventure. Like the 15 seasons that came before it, this winter has been a winter of migraines.
Resisting the Urge to Hibernate
I am lucky. I live in a littlecabin sandwiched between snowy domes and formidable peaks. The Sierra Nevada is my happy place – the place where I feel most connected to my healthy, vibrant self and the rich world I get to live in.
If anything is strong enough to dull the glow of my happy place, though, it’s Chronic Migraine.
I found joy in crafts, baking, my home, and my friends this winter. Even as I battled migraine attacks and snowstorms, I found joy in my body and in my environment.
While I devoted my time and energy to work, hobbies, and health, my Migraine self – my Hyde – constantly lurked in the shadows. Like most people with chronic pain, I spend huge swaths of energy steering myself away my Migraine self, my Hyde. If I don’t invest in me, if I don’t choose joy, I run the risk of becoming Hyde full-time.
Forcing myself to go for a run with a headache, popping on an ice pack and writing away on my laptop, bundling up and grabbing my skis when my body wants to be in bed for the fifth consecutive day – from the outside my battle looks like the normal life of a young person. In reality, each hour during this winter of migraines that I managed to resist hibernation is a huge victory.
Shoveling, Skiing, and Sleeping My Way Through a Winter of Migraines
These victories are even more impressive when you consider the kind of winter we’ve had. If there was ever a winter made for hibernation, it is this one.
The ski mountain that looms dramatically over my home currently reports 330″ inches of snow at the summit. That’s twenty seven and a half feet!!
In an attempt to save some cash, my housemates and I decided not to pay for snow removal for our four-car driveway. This means we shoveled (by hand!) our way out of each atmospheric river snow dump. The snow was so thick that on several occasions we left our cars at home and skied the unplowed streets.
Chronic Pain Be Damned
Living well when you’re sick every day is damn hard. I know from experience, though, that
it is well worth the effort. I have bad days and worse days and I’m tired all the time. But I am creating a life I love with people I love in a place I love – chronic pain be damned.
Really, what more could I ask for?
Today is the Vernal Equinox – the first day of Spring. I am ready for a new season, a sunnier season. This spring, I chose adventure. I strive toward health and pain-free days.
Above all, I remain committed to taking this journey one step and one day at a time.
Wild places to walk, sweat, explore, and breathe in are precious. Growing up in the suburbs, wild places that were near to me were made even more precious by their rarity.
I was surrounded by concrete and the inescapable roar of engines, but I could retreat to a wild place. I was lucky enough to grow up near the ocean and the wetlands. I run on dirt trails and watch as migratory birds pass through our coastal home. Migraines make me spend too much time in a dark room, but I am able to practice my own ecotherapy in these wetlands where I find nourishment in fresh air and clouds.
My favorite running route wound through a large field that was half strawberry field, half undeveloped chapparal. Songbirds, raptors, bunnies, and squirrels called the large area home. I ran through the field and along the channel hundreds of times, passing the same dog walkers and familiar bird species each time.
The strawberry field is now gone. The raptors perch in snags at the edges of what used to be a thriving field. The drone of engines is inescapable as tractors comb the wet earth, flattening and scraping for the neighborhood to come. It is impossible not to mourn the loss of this wild space and the wild things that called it home.
A neighborhood behind me stands mostly empty on the bluffs. The bluffs provided nesting sites for large herons and egrets. The houses are huge and mostly alike, but for some reason, no on really lives there. Who decided to replace these wild homes with more empty concrete ones?
One Less Wild Woman
This is, of course, not the first or most dramatic time I have mourned the loss of wild things. I spent summers in my early 20’s living, working, and playing in the Sierra Nevada mountains. I fell in love with rivers and mountains, lakes and peaks. I lived in a tent cabin and spent as many nights beneath the stars as I could.
I worked on a river and a lake. I guided hikes and campfire programs. I met people from all over the world and swam, hiked, and loved the mountains all summer. Fall, winter, and spring were spent dreaming about getting back to the Sierra. I continued to run and climb indoors, preparing my body for miles of adventures to come.
A few days after my 24th birthday I awoke with a migraine. It was a persistent one, and it seemed to launch me into a new life of chronic migraines. After several weeks in bed, I said goodbye to my job and mountain home. My migraines and I spent the next three years healing in the suburbs. It was the most trying period of my life.
One Less Wild Cat
Sometimes caring for another helps you care for yourself. A rescue kitten came into my life shortly before my 27th birthday – just last June. He was sick, blind, and needed a home. I had no intention of adopting a pet until I met little Jupiter (aka Goop). Knowing how it feels to be lonely, sick, and stuck in the dark, I couldn’t let the little guy go back to a hard, wild life despite his special needs.
The last thing my life needed was responsibility and more medical bills, but that is what I got. Like most reluctant pet parents, I wouldn’t have it any other way. Migraine days and good days alike are made better with a companion and kitten cuddles.
A New Wild Home
The domestication of both Jupiter and myself is finally coming to an end! Last week I signed the lease on a new home in the mountains, not far from where I lived before chronic migraines. The relief and gratitude I feel every morning that I wake up to smell Jeffrey pine trees and listen to nuthatches call to each other is indescribable.
The transition period is still in full force. My clothes are in boxes, and I left my kitten at my parents’ home for another week. The aspen trees are turning brilliant orange and the air is noticeably crisper. Soon the snow will come and we will settle in to a season of warmth, health, and growth.
Moving back to the mountains and creating another wild home was a dream too big to consider for years. Now, thanks to a part-time job with an understanding boss, fantastic roommates, and my always patient boyfriend, I once again feel at home. I once again feel wild.
Like Audrey Hepburn unfurling her wings in an intellectual jazz bar in Funny Face , I have been reuniting with my body and mind by making them dance. Quite literally in the case of my body, at my boyfriend’s band practice or to Beyoncé in my car. As for my mind, pirouettes twirl in the form of words and symbols. Reading, writing, creating, listening to music, and observing art all set my soul dancing.
I quit ballet rather suddenly the winter I was 12 years old. I had just graduated to full pointe classes and was at the studio for instruction or rehearsal three days a week. I received new leotards and permission to shave my legs as early Christmas gifts. The whiteblonde leg hair grew through the holes in my black tights and contrasted starkly. Thanks to puberty, my period, braces, circular Harry Potter glasses, and a new resurgence of migraines, my 12th year was crappy enough without the embarrassment of a leg-hair-ballet-tights situation. Luckily my mom was merciful, and I am not as easily embarrassed these days, so you get to hopefully find delight or commiseration in my awkward middle school self.
Dancing these days is much more relaxed – the dancing of a few beers, old friends, and a clear night sky. Or to an afternoon breeze through an open window, no witnesses to my lack of rhythm except the noisy hummingbirds outside. I watch monarch and mourning cloak butterflies in my garden dance, twirling around each other like in water. I twirl myself sometimes, around my nephew, his young friend, and a full shopping cart, trying to wrangle the three irrational beings. The music and din of market conversation is always so loud, the lights so bright, the experience such a dizzying rush that it feels like a dance performance. But we are rewarded at the finish with fruit instead of flowers.
A flash of nostalgia came over me as I picked up the yellow towel on the couch and hung it up. I remembered my nephew flinging it aside last night the moment he got out of the bath, his long hair dripping on his small, cold shoulders. I saw the same image two nights ago when we planted in his garden after his bath. He seems impervious to the cold and intent on getting dirty, too excited to put on a shirt before grabbing his small yellow hoe. We had meant to plant during the afternoon of course, but my sister, his mom, is a self proclaimed hater of the wind and the palm trees in Southern California have been extra vocal this week.
My head throbs now when I hold the yellow towel just as it did when I watched his dear shoulders guide the yellow hoe through a path in his garden. I don’t notice too much. It isn’t too bright or loud, and every day I am learning to be calmer and gentler with myself.
I am trying to be patient with my body, giving it the time and space it needs to heal, and making an effort to enjoy every moment spent with my family.
My shoulders were even smaller than my six-year-old-nephew’s are now when I experienced my first migraine attack. I was three years old and just recovering from a nasty bout with the chicken pox when I experienced excruciating nausea and head pain. To this day I remember not wanting to watch Beauty and the Beast because the television hurt my eyes and how that fact scared me. At that period in my life, like so many budding bookworms in the early 90s, it was a serious emergency if I was too sick to watch Belle tell off Gaston.
I Now Pronounce You Diagnosed
Once I vomited (my greatest fear at that young time) the pain subsided a bit and I was able to sleep, but the attacks were not over. I experienced two more in the following weeks which meant a trip to Dr. Dias, my favorite pediatrician, a gentle Indian man with soft hands and incredibly blue eyes.
I have heard my mother tell the story of my toddler migraine attacks to several neurologists and doctors over the years, and she always includes this exchange:
Mom: Please don’t tell me she has migraines.
Dr. Dias: I can tell you these aren’t migraines, but they are migraines.
I now pronounce you diagnosed.
I don’t remember much about being three but most of it revolved around the back yard and my little sister and playing in the sprinklers. It’s easy as an adult to conjure up feelings of goodwill, love, and empathy alongside an image your toddler self. When you picture your young self ill or frightened the desire to comfort is strong and natural. But as we get older, thanks to society or nature or both, that desire fades and sacrificing our health for success, money, convenience, the happiness of others, fill-in-the-blank, is the norm. Whether you’re stuck inside with a chronic illness 23 hours a day or just doing what you need to do to make your day a little easier, each of us could benefit from looking in on that young self every once in a while.
Long must you suffer, not knowing what,
Until suddenly, from a piece of fruit hatefully bitten,
The taste of the suffering enters you.
And then you already almost love what you savor. No one
Will talk it out of you again.
-Rainer Maria Rilke
Even after a brief stay at elevation the air on the coast feels impossibly thick. The city streets seem too wide, the sky not blue enough, the horizon too far away. It doesn’t take long for the mountains to get under your skin. After only a few hours at elevation your blood thickens and your body produces more red blood cells. You become more efficient at using oxygen so that even this thin air feels more nourishing than her coastal cousin.
I was away less than two weeks this time, but it was long enough for me to reconnect to places and people that I love and miss and also meet and discover new ones. It was long enough for me to feel the freshly melted snow carry my hair downstream. It was long enough to sweat, climb, and bleed in the early summer sun. It was long enough to reawaken muscles and corners of my body and soul that have too long been ignored. It was long enough for me to remember what it feels like to be healthy again.
During the 12 days I spent in the Eastern Sierra I had four migraines. Each of those migraines lasted less than twenty four hours, not including the postdrome stage (also known as the migraine hangover.) To some this may seem like a lot, but compared to the baseline of daily, constant migraine that was my reality for way too many months, it is remarkable. Even just a day – an afternoon – of respite from pain is celebrated. You cannot truly appreciate the feeling of the sun on your skin until you have experienced true darkness.
Happy Migraine and Headache Awareness Month 2016!
This is my first year participating in this campaign and I am thrilled that the theme chosen for this year’s awareness month focuses on living well with migraines rather than solely awareness aimed at the general public. This year’s theme is Rule Your Headache Disorder with a special message to be actively engaged in your treatment and lifestyle choices. Like many migrainuers, I know from experience that ignoring my headache disorder, letting my doctor call the shots, or slacking off with lifestyle modifications can very quickly lead to a situation where I feel out of control. Alternatively, learning about migraines, keeping communication open with my doctor, and continuing my commitment to lifestyle modifications puts me in a position to best rule my headache disorder.
Combat Pain with Creativity
Active engagement in our treatment plan extends far beyond the doctor’s office, just as the tentacles of migraines disease reach far beyond our own bodies. Each and every migrainuer is different and experiences migraines differently, but diet, sleep, exercise, and, my favorite, stress management are all important pieces of the management puzzle. Keeping stress at a minimum is crucial both between and during migraine attacks, but it is difficult to say the least, especially when you are dealing with severe pain and nausea.
One of the best and most fun ways to combat pain and relieve stress is through the creative process. Coloring, cooking, walking, reading, writing, painting, photographing, birding, listening to music… Any tasks that involves focus and imagination quiets down the part of the brain that controls stress, the amygdala, and causes a stress-relieving response throughout the entire body.
“Fostering imagination as an adult is one of the most meaningful things to do for your mental health,especially if you are dealing with the high levels of stress that comes with chronic pain. Illnesses changes lives, abilities, and perspectives, and creative activities help tap into a deeper part of ourselves. It is precisely the creative and playful part of ourselves that we need to connect most to in order to process the experience of pain and best cope with it.”
A special thank you goes out to Teri Robert for her work with Healthcentral for Migraine and Headache Awareness Month. Be sure to wear purple all month to show your support and keep your eyes open for headache and migraine hashtags on social media.
It has been only four months since my last post, but in some ways it feels I’ve lived half a lifetime since then. Winter, or what passes for winter in mild southern California, has fully given way to spring. The finches at our backyard feeder are in full breeding pluming with vibrant red breasts and their mating songs are a welcome addition to the mostly mechanical sounds of the neighborhood. Mourning cloak and monarch butterflies are so abundant that one could (and sometimes I do) spend an entire afternoon watching them dance in the gentle breeze, occasionally landing on a milkweed leaf or a palm frond or even finding a partner or two to pirouette with.
As for me, I have been working very hard to steer my own winter towards spring. Unfortunately, my migraines have progressed from chronic migraine (15 or more migraine attacks a month) to chronic daily migraine. In essence, I no longer go through the four phases of a migraine attack, and I have symptoms of a migraine at all times, including but not limited to: light and sound sensitivity, head pain, fatigue, body aches, nausea, chills, neck pain, irritability, alloydnia (skin painful to the touch), vertigo, and tinnitus. Some days or parts of days are better than others, but I haven’t had completely migraine free days yet. I include my individual symptoms not in an attempt to garner sympathy, but as a gentle reminder to any of my readers lucky enough not to experience migraines themselves that they are so much more than just a headache!
Anticonvonsulants for Migraine Prevention and Their Pesky Side Effects
Because of my worsening migraines, I decided to drop out of the clinical trial that I was enrolled in so that I could fully focus on getting my migraines under control and take the preventative medications that conflicted with the trial. Unfortunately, the headache specialist at UCLA Neurology Clinic whom I trusted and had been working with for the past 18 months took another job and left the hospital right around the same time that my health got worse. She prescribed me a large dose of Depakote, an anticonvulsant that is used to treat both migraines and central nervous system sensitivity and is one of the few I had not previously tried, before she left. She warned me about hair loss and weight gain, but luckily I did not experience either.
I did, however, experience some pretty severe brain fog and tremors when I was later prescribed a second anticonvulsant, Topiramate (or Topamax), by my new headache doctor. Almost every chronic migraine sufferer is familiar with Topamax, as it is one of the most effective and commonly prescribed migraine preventative medications. The brain fog associated with it, however, can be so horrible that it is un-lovingly referred to in the migraine community as Dopomax. The side effects of the two anti-seizure meds on top of the daily migraines added up to an utterly miserable mess of me.
Propofol and Occipital Nerve Blocks for Refractory Migraine
By the time I met with my new neurologist I had been in bed for three months, had lost ten pounds, and was ready to try more aggressive treatment. She rcommended we try an outpatient procedure during which I would be anesthetized with propofol. While knocked out I would also receive nerve blocks to treat the damaged occipital nerves that begin at the base of the skull, wrap around the head and end at the eyes and may be causing some of my pain.
Studies have shown that propofol infusions can help some patients with migraines that do not respond to treatment, but I, sadly, was not one of those patients. The staff at the surgery center was so wonderfully kind to me, and my insomnia leading up to the procedure was so terrible that I think it was worth it just for the experience of a deep drug-induced sleep. Although, I could have done without the bill.
“Your struggle is your strength. If you can resist becoming negative, bitter or hopeless, in time, your struggles will give you everything.”
Our next try was an injection of DHE, a drug commonly used to abort migraines. Administered via injection or IV in a doctor’s office it has a high success rate at stopping ongoing migraines, particularly in people with episodic migraines. It was not my silver bullet, to neither mine nor my doctor’s surprise. At that point my migraine had been daily for five months, and I no longer expected to wake up in the morning without a migraine.
The real MVP in the DHE trial was my beautiful little sister who took me to the appointment and managed to comfort me with one hand while I car vomited and change lanes with the other on the 405 freeway at 70 miles per hour. Without her strength and empathy the miserable experience would have been much more miserable.
Cognitive Behavioral Therapy & Looking Forward
I am primarily housebound, as there are not too many places one can go when one’s symptoms are exacerbated by light, sound, and movement. I am working with a Cognitive Behavioral Therapist who deals exclusively with the elderly or the ill and we are constantly looking for new ways to adapt my skin and mind to my surroundings, so I can experience as much life as possible even with a migraine. Steadily and slowly I’m learning mindfulness, gratitude, gentleness, and pacing. It is a physically and emotionally trying journey and I sometimes leave her office overwhelmed with even more tips and suggestions of things I “should” be doing. Even so, I am working very hard and I have already seen quite a bit of progress on this road I am traveling that will hopefully lead me to remission or acceptance. But that is for another post.
I am slowly titrating off of the anticonvulsants that did not bring me relief under the guidance of my doctor and am so grateful to bid adieu to the tremors and the worse of the brain fog. I have implemented dozens of small lifestyle and supplement changes, which I plan to write more about in my upcoming posts if my head allows. Until then, I am focused on listening to my body, practicing healthy habits, educating myself as much as possible about my disease, and trying to suck as much joy as possible out of this beautiful and only life I have been given.
Just before sunset I put on my neglected running shoes and went for a walk. As the sun set over the wetlands, my mom and I watched the dabbling ducks dive for the last meal of the day. We watched the ibises and the egrets fly home in groups of threes and fours. We watched the colors change in the sky and on the water, and we just walked.
After more than two months in bed with pain so big standing up made it worse, walking in the cold fresh air felt like a baptism. It is hard to feel full of life when you are stuck in bed, day in and day out. It is hard to feel full of life when every movement, sound, and light hurts. It is hard to feel full of life when your whole world feels as big as as your bed on a good day and as big as your body on a bad day. Just being outside, feeling my muscles and joints reawaken, I felt like I had been given a completely different body.
Even better, I felt like I had been given hope. The chronic illness journey involves constantly toeing the line between hope and fear. Naturally, any time my health gets worse or I experience a prolonged migraine attack my thoughts turn more easily to fear. Fear of getting worse or never getting better, fear of side effects and complications, fear of judgement and abandonment. These are the days when hope is at its most powerful but is the most difficult to draw upon.
As I move further along on my chronic pain journey I am getting better at finding joy and hope during periods of illness. I expect this to be a continuous challenge filled with ups and downs befitting the cyclical nature of grief and gratitude. When the pain subsides, though, the joy is overwhelming. All of a sudden the hope and gratitude that I have struggled to hold onto come easily. Watching the sun set and the birds dance I am reminded that my place in the world is so much more important than my illness. I am reminded that I am so much more important than my illness.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting
over and over announcing your place
in the family of things. – Mary Oliver
I have had a migraine for the past THIRTY SIX days. Surprisingly, I have not yet gone insane. I have been more or less glued to my ultra cozy bed in my dark room. Trying to make myself as comfortable as possible has become my full time job. My muscles ache, my head is pounding, the room is spinning, my ears are ringing, and my stomach is churning. I feel like I have been violently struck in the head every day for the past 36 days.
Seriously, even my hair hurts. Thanks to the magic of the central nervous systems, migraines manifest themselves in a variety of bizarre symptoms like allodynia. Allodynia is the experience of pain from touch that should not be painful. When I have a migraine, the pain nerve cells in my brain and spine get over-excited. The sensory signals in my central nervous system get mixed up and cause normal touch to produce an abnormal painful result. A neurologist recently tested me for alloydnia by lightly running a paintbrush over the skin on my forehead. Just that light touch caused intense pain in my head.
Migraine sufferers who experience allodynia are more likely to find that their migraines don’t respond to triptans, which are one of the most effective families of migraine drugs. Despite years of trial and error triptans have never worked well for me. Because I haven’t found a medication that aborts my migraines, I run the risk of developing migraines that lasts for weeks. These long-lasting migraines are called status migrainosus or intractable migraines. They are pure hell.
I have kept my sanity intact through these long weeks of pain using the most powerful tool at my disposal: distraction. I binge watch every episode of Parks and Rec through half open eyes. I crochet beanie after beanie. I listen to podcasts and gentle music. I take more naps than a toddler. Nothing takes me away from my pain, however, like the emotional power of a good novel. I recently finished listening via audiobook to the final novel in Italian novelist Elena Ferrante’s Neapolitan series, The Story of the Lost Child, and I enjoyed it so much I am ignoring my angry head to tell you about it.
The Neapolitan novels follow the lives of two women, Lenu and Lila, who were born and raised in the slums of Napes in the 1950s. Through the lens of their friendship, Ferrante paints an intricate portrait of life and death that is impossible to not get swept up in. While reading the novels, my life became entwined in the loves and losses of the two girls. I ached with them and loved with them. I grieved with them and grew old with them. Thanks to the Ferrante’s skill as a writer, I peeked into the dusty corners of their lives and I saw myself.
I am blown away by Elena Ferrante’s skill as a writer. The Neapolitan novels are some of the most honest and moving pieces of fiction I have read in years. These novels are about many things: friendship, loss, childhood, daughters, violence, politics, writing, reading, love, feminism, mothers, sex, education, Italy. Through the experiences of two Italian women, Elena Ferrante beautifully captures the complexity of human relationships and all of the suffering and joy they bring.
Truly great novels offer distraction and connection at the same time. Truly great novels soothe broken hearts and aching heads. They offer nourishment, solace, and comfort. Truly great novels simply make life more bearable. My pain is powerful but so are words. They allow me to live many lives and they help me fall in love with my own. And for that I am grateful.
“Books are mirrors: you only see in them what you already have inside you.”
― Carlos Ruiz Zafón, The Shadow of the Wind
On Monday morning, I experienced the simple bliss of waking up without a headache. Over a year ago, my neurologist told me that waking up every morning with a headache is a sign that I am over-using medication (triptans and Ibuprofen in my case) causing rebound headaches. Though I rarely treat my headaches and migraines with any medication that can cause rebound, my head is still wracked with pain most mornings before I even open my eyes.
Monday morning was different, though. I woke up pain-free and ecstatic to spend the day with my boyfriend who is visiting me after a long summer apart. We enjoyed coffee and breakfast together, and the pleasure of spending a pain free morning with the person I love the most made me giddy with gratitude and relief.
These moments of respite from pain are bittersweet and always too short-lived. Shortly after breakfast, I was hit with extreme fatigue. Nausea, light sensitivity, and eventually throbbing pain soon followed until I was fully immersed in a migraine. I went from a happy young woman ready for a beautiful day to an exhausted, brain-dead dark-dweller. In my pain and disappointment, I cried and raged and internally bashed my body for being useless for little more than misery or pain. Even after two years of chronic migraines, every single migraine feels like a betrayal.
My body deserves my compassion, not my rage.
I know this but have to remind myself of it daily. I expect a level of compassion from my family, friends, partner, and doctors that I have trouble giving myself. When a migraine sets in my emotional strength is drained, and my mind wanders easily to negative, self-critical thinking patterns. There is nothing unhealthy about complaining externally or internally when you’re in pain, but when you’re in pain for so much of your life those thinking patterns can take over and lead to isolation and a further diminished quality of life.