A flashing Migraine aura shortly after waking has confined me, once again, to my bed and to my head. After meditation + medication + nap, I turn to the Internet where Google’s gorgeous birthday tribute to Virginia Woolf inspires my own brief tribute to a muse for Migraine writing.
Literature has always held the answers for me. Until I met Chronic Migraine, I hadn’t dealt with a problem or pain that a few hours of journaling wouldn’t heal. When I turn to literature for solace and guidance in my life – and eventually, my own Migraine writing – I’m greeted with few real options. Virginia Woolf noticed, too.
“Finally, to hinder the description of illness in literature, there is the poverty of the language. English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache. It has all grown one way. The merest schoolgirl, when she falls in love, has Shakespeare or Keats to speak her mind for her; but let a sufferer try to describe a pain in his head to a doctor and language at once runs dry. There is nothing ready-made for him. He is forced to coin words himself, and, taking his pain in one hand, and a lump of pure sound in the other (as perhaps the people of Babel did in the beginning), so to crush them together that a brand new word, in the end, drops out. Probably it will be something laughable.”
– Virginia Woolf, On Being Ill
Love, suffering, pain, even death are explored deeply in literature again and again, but most writers have been afraid to look sickness in the face. It’s no surprise that an empathetic and raw look at sickness generally and headache especially came about when women finally picked up the pen.
Virginia Woolf, tragic Ophelian muse that she is, was one of the first.
Happy Birthday, Virginia. From one sick soul to another, creating from bed.
“Illness is a part of every human being’s experience. It enhances our perceptions and reduces self-consciousness. It is the great confessional; things are said, truths are blurted out which health conceals.”
It has been a rough year for all of us. From the explosion of xenophobia and the election of a sexual predator to the White House, to the near constant headlines of police brutality and senseless gun violence, 2017 required us to take an exhausting look at the sickness of our society. Those of us navigating a sick society with sick bodies have had an even rougher year, with constant threats to Medicare, Medicaid, and the Affordable Care Act adding more stress to our already maxed-out bodies.
While the shitstorm of 2017 grew inside and out, I turned to mankind’s greatest comfort: books.
Books are the ultimate window into humanity. They draw out love, grief, fear, despair, hope – those universal truths of humanness that all of us feel so intensely and yet too often make us feel alone. Books are the ultimate tools for empathy. A good book shines a light on truths inside of yourself and helps you see the truths in those around you.
As Maya Angelou wrote:
“Information helps you to see that you’re not alone. That there’s somebody in Mississippi and somebody in Tokyo who all have wept, who’ve all longed and lost, who’ve all been happy. So the library helps you to see, not only that you are not alone, but that you’re not really any different from everyone else.”
The Art of Mindful Living: How to Bring Love, Compassion, and Inner Peace Into Your Daily Life by Thich Nhat Hahn
This audiobook is only two hours long, but it contains more wisdom and guidance than an epic tome. Read and written by Zen Buddhist master Thich Nhat Hahn, this book has changed my life. I have listened to it many times and use the principles within it every single day in my mindfulness practice. I will gladly spend the rest of my life practicing the teachings of this book.
This book is perfect for: humans; those seeking peace or healing; anyone interested in mindfulness, spirituality, or meditation
When Women Were Birds: 54 Variations on Voice by Terry Tempest Williams
“We come into this world through women, a woman who is spent, broken open, in awe. No wonder women have been feared and worshipped ever since man first saw the crowning of a human head here, legs spread, a brushtroke of light.
We are Fire. We are Water. We are Earth. We are Air.
We are all things elemental.”
This book is perfectfor:writers, poets, hikers, environmentalists, strong women
The Grim Sleeper: The Lost Women of South Central by Christine Pelisek
True crime is my ultimate weakness. Nothing distracts me from my own pain and trouble like a gory, true, and horrifying tale of crime. While I get my fix mostly from podcasts (SSDGM!), The Grim Sleeper was absolutely worth the commitment. With respect and journalistic integrity, Christine Pelisek tells the true story of a serial killer in Los Angeles who murdered women of color over the course of decades. The book takes a hard look at our justice system, race relations, and violence against women. It’s a horrifying story that absolutely needs to be told.
This book is perfect for: true crime aficionados, making the hours fly by, sleeping with the lights on
The Hate U Give by Angie Thomas
Honestly, I hate it when books make you cry but sometimes it’s necessary. Angie Thomas’ young adult novel about a young black girl who witnesses the murder of her friend by a police officer had me in tears at least three times. The story is heavy, relevant, important, and wonderfully told through the eyes of a 15-year-old narrator. I usually don’t go for YA books, but this one is so much more adult than I expected. And it manages to cover serious themes without being preachy. A+
“Sometimes you can do everything right and things will still go wrong. The key is to never stop doing right.”
This book is perfect for: white people; fostering empathy
Manhattan Beach by Jennifer Egan
As far as I’m concerned, Jennifer Egan is a goddess. Her genre-bending Pulitzer Prize-winning novel A Visit From the Goon Squad blew me away in its scope and creativity, so when I saw she came out with a new novel in 2017, I immediately got my hands on a(n audio) copy. Manhattan Beach is on the longer side, and I almost lost interest part way through, but I am so, so glad I stuck with it. This historical fiction novel takes place during WWII in New York City and follows the life of Anna as she navigates what it means to be a working woman during wartime in a society that prefers women to be invisible. It is an adventurous and unpredictable novel filled with memorable characters, a vivid setting, and an exciting plot. In short, everything I look for in a good book.
This book is perfect for: history lovers; fans of the Sopranos; modern-day Rosie the Riveters
Peace out, 2017! I can’t wait to see what 2018 will bring: the adventures, the tragedies, and the books to soothe both.
As of July 3, 2017, I have been reluctantly learning how to live with chronic migraines for four years. This anniversary passed with a pit in my stomach, extra weight on my shoulders and limbs, and nothing more.
Time is not as heavy when you’re sick. How could I possibly count the lives I’ve lived in the past four years? How can I explain the agonies, the nightmares, the feverish desire of the past four years? How can I possibly explain the calm with which I now greet each day – even as a storm rages in my brain and central nervous system?
How to Live with Chronic Migraines: Lessons in Life and Suffering
Robert Frost wrote, “In three words I can sum up everything I’ve learned about life: It goes on.” This was one of my favorite quotes as an angsty teenager and still is today as a 28-year-old woman with a chronic illness.
I am not as elegant as Robert Frost, and I’m prone to (light) plagiarism. But I, too, can sum up everything I’ve learned about life, particularly about life with chronic migraines:
Life is suffering.
On the surface, this lesson that I stole from Buddha feels inherently negative and necessarily harsh. But unravel its threads and you can see the truth, the beauty, and the freedom that this idea holds.
For women, this idea is familiar or even obvious. We who bleed monthly with a whole body shudder know suffering. We who hold the seed of life every day, feel the weight of its responsibility, know this.
We who are sick know this. But as independent, modern women and men, we fight suffering. From the first breath we seek comfort, relief, fulfillment, and the more we suffer the harder we seek.
To be still , to accept the suffering of life , is to be free. To end the seeking , to acknowledge your suffering, is to be free. To feel the suffering of others flow through you, made of the same cloth as your own, is to be human.
The idea that life is suffering – and that it still goes on – hit me suddenly four years ago with the shock of jumping into a near-frozen lake. It took me four years of fighting, four years of weakness, four years of seeking and desiring, to learn how much power I hold in my suffering.
Life is suffering. Suffering is life. In the final waves of your mother’s womb before you took your first breath. In the scream of a blackbird as a raven devours her young. In the bumper to bumper traffic you sat in this morning. In the words you say to those you love that you can’t forget.
From pain, comes beauty. From pain, comes life.
I’ve Learned Enough for a Degree
It took me four engaging and exhausting years at UC Santa Barbara to earn a double major: Bachelor of Arts in Environmental Studies and Political Science. The past four years learning how to live with chronic migraines have been equally draining and enlightening.
For the occasion of surviving – no, thriving – through four years of chronic pain, I have invented and am presenting myself with a degree:
Bachelor’s of Life in Suffering and Chronic Pain (with a minor in empathy)
Although I’ve learned many lessons in how to live with chronic migraines, I have not necessarily accepted that chronic migraines will always be a part of my life. But if life drags me through Suffering and Chronic Pain grad school, at least I know I’ll be able to handle it.
Tools to Help you Live Better With Chronic Migraine
Each of these resources has helped me personally. If you’re struggling to make sense of a life with unpredictable pain, I highly encourage you to poke around and try out some of these tools:
Dr. Dawn C Buse –learn diaphragmatic breathing and relaxation from a Migraine psychologist
Migraine Strong – positive support group on facebook for Migraine diets and Migraine living
Migraine World Summit – knowledge is power. Arm yourself with tools and science from the top minds in Migraine medicine
Find a Cognitive Behavioral Therapist – I think every person with chronic pain can benefit from CBT. (I personally relied on CBT during the darkest of times, and I’m very grateful for it). If you have issues with sleep, anxiety, or depression on top of chronic migraines, I encourage you even more strongly to see how much a good therapist can help.
Not all of the friends lost because of chronic illness are made of flesh
The backs of shampoo bottles. Street signs and shop names. Catalogs and junk mail. Words swirl in my mind all day long. My eyes are drawn to words – in the car, in the shower, on the toilet, in the kitchen. A stack of papers on the counter is a temptation too much to resist for me. I have been accused of being nosey more than once, rifling through a friend’s mail.
In other words, I love words. A reader since age four, words have been a big part of my life for as long as I can remember. I hold my own memories and the stories I have read just as dearly. Anne of Green Gables was my bosom friend, dear to me as her living, breathing counterpart. Mary, Beth, Jo, and Amy March – the sisters from Little Women – taught me almost as much about feminity and independence as my own three sisters.
When I first encountered death at a young age – in its slow, stinking form of cancer – and its partner grief, I took to the page. I wrote a story – full of plaigarism, spelling mistakes, and hearts over the i’s like you would expect from a 9-year-old girl. It was morbid and a little silly, but it was the only way for me to make sense of something as big and unpredictable as death – through words.
Reading with Chronic Migraine? Yeah, Right
Eighteen years later, Chronic Migraine has changed everything. Chronic Migraine brings a lot of baggage – debilitating and diverse symptoms, ruined relationships and careers, destroyed dreams and altered plans. Among other things, Chronic Migraine brings me light senstivity, a headache all the freaking time, and a very different relationship with words.
I still love words. I devour podcasts and music and audiobooks regularly. Writing is a huge part of my life. But books – the magical, rough, fragrant physical objects with their coffee stains and barcodes – are no longer an integral part of my human experience. Chronic Migriane has stolen so much from me that it may seem silly to mourn the loss of books, but for me, it is devastating.
I can still read, of course, and sometimes I still do. But in the same way that I have to carefully moniter and allot the little energy I get each day, I have to regulate how and how long I use my eyes. Because the majority of my pain is in my head, my face, my eyeballs, and my neck, any tasks that involve visual and/or intellectual concentration is difficult and draining.
I am so, so, so lucky to have a paying job where I not only get to learn and advocate about my illness, but I get to use the very thing I love so dearly – words. Like so many other jobs, mine involves a computer screen. Every hour I spend looking at a computer screen or shopping in flourescent lights or walking in bright sunlight is an hour that I cannot spend looking at a book. I simply do not have the well hours and my aching eyes do not have the ability to do it all. Reading with Chronic Migraine is near-impossible.
From Dostoevsky to To-Do Lists
Giving up the pages of books is a small price to pay for what I have gained. Gainful employment and being active outside are two big parts of my life right now. To a healthy person, this sounds basic, but anyone with a chronic illness understands that both of these are HUGE. This time last year both were merely fantasies.
I still have mulitple library cards. I still go to the library regularly, with my laptop to write or sometimes to just walk up and down the rows of books, breathing deeply their smell, carresssing dusty spines, and remembering old friends. I still scribble in a Moleskin from time to time and skim too many political articles online.
Sometimes I pick up a book of poetry or short stories, but unlike in my healthy life, I rarely finish an entire volume. Reading with Chronic Migraine is a stunted, unsatisfying affair. I read The Brothers Karamazov at 17 and at 27 I stick to mainly to the backs of shampoo bottles, street signs, and junk mail.
I miss books deeply – I miss seeing them on my nightstand and feeling them knock against my thigh in my purse. But mostly, I miss myself when I was reading books. I miss the days when, “Does my brain work?” and “Will I be able to open my eyes today?” were not the first questions that ran through my mind in the morning.
But I am coping – with this loss and the many, many others that I have sustained at the hands of chronic illness. I have faith that someday books will be a big part of my life again. Until then, I’m going to keep holding on tight to my library card – and my Audible subscription.
“Fear – fear’s a powerful thing. I mean, it’s got a lot of firepower. If you can figure out how to wrestle that fear to push you from behind rather than stand in front of you, that’s very powerful. I always felt that I had to work harder than the next guy, just to do as well as the next guy. And to do better than the next guy, I had to just kill. And you know, to some extent that’s still with me in how I work. I just. ..go in.”
-Jimmy Iovine, Intro to “All In a Day’s Work” by Dr. Dre
Spend 30 seconds on this blog and you will discover that I am about as white as they come. As a white girl, I grew up with a certain amount of privilege. My childhood was rather free of adversity and, consequentially, gangsta rap. It wasn’t until my 20s when I was introduced to the world of chronic migraines that I began to understand the power of music and words.
I have had many sick, sad days during the past three years, thanks to the far-reaching effects of chronic illness. Migraines impact my career, my relationships, my appearance, my bank account, my home, my hobbies, and my dreams. Pain and nausea ebb and flow through my days, keeping me forever humble.
“It takes a special kind of motherf***a to live like this” Anderson .Paak raps on Dr. Dre’s superb track “All In a Day’s Work.” I couldn’t agree more, Anderson. Obviously, my chronic migraine life looks a lot different from Dr. Dre’s. The challenges that I face are worlds apart from the ones he overcame as a black music producer from Compton. The kind of self-assured anger that Dr. Dre’s music, and other music, feeds off of is exactly what I need, however, to get through my days of pain with strength.
The Power of Music
“One good thing about music, when it hits you you feel no pain.” -Bob Marley
Spend enough days in bed and you start to look at your interests as little life rafts. When dealing with chronic illness, you spend your entire days listening – to your breath, to your pain, to your symptoms, to your body. When it’s time to engage in leisure activities, like reading or listening to music, it’s difficult to turn off that longing. It’s difficult to turn off that effort to seek, to constantly strive for answers.
If you’re like me, you may find yourself clinging to words, finding little bits of yourself and small morsels of wisdom in art that make your life more bearable. That is the power of music. That is power of art. Like in life, in music you discover only what you seek.
I don’t pretend to understand the life of Dr. Dre or presume that he and I are similar. I don’t affirm that gangsta rap is the only kind of music that embodies a powerful anger. Beyonce’s album Lemonade, Pale Hound’s Dry Food, some folk by Bob Dylan and Joni Mitchell, modern folk band The Staves, and even pop goddess Taylor Swift let anger guide their art from time to time. And their music is more real because of it.
Expressing anger in art or music is a powerful step towards releasing its control over your thoughts and actions. Anger is natural part of the grieving process that everyone with chronic pain encounters. Expressing it through art releases its hold before it has a chance to turn into bitterness or despair.
Make Art. Conquer Pain.
Listen. Look. Love. Sing. Create. Write.
You don’t have to show anyone. Buy a coloring book and some colored pencils online. Watch Bob Ross on Netflix and play around with watercolors. Journal or make a list. Creativity is a powerful way to heal, rest, and grow. It’s an old and simple concept, that I would like to believe is true – surround yourself with beauty, look at beautiful things, and you will start to notice the beauty in your own life. Pain begets pain – that continues to be a chronic illness truth. But so does beauty beget beauty.
The power of music can heal listeners. Those who create – those who sing, write, paint, dance – unleash the full power of art to not only heal but to set free.
The late Dr. Oliver Sacks wrote about the power of music in a 2006 edition of Brain: A Journal of Neurology. He wrote about how music helps people with different neurological conditions, like Parkinson’s disease and Tourette’s. He wrote about how music can bring people together and make people look within. The paper ends with a simple conclusion, “In the last 20 years, there have been huge advances here, but we have, as yet, scarcely touched the question of why music, for better or worse, has so much power. It is a question that goes to the heart of being human.”
When I first began writing this article I titled it “4 Lessons Learned and 4 Things I Struggle With After 4 Years of Chronic Pain.” Only after I finished the first paragraph did I realize that it has only been three years since I have been in chronic pain. Time becomes a fluid, sticky substance when you are sick. Night and day blur into one long, sleepy and sleepless period of temples pounding and stomach churning. The light is abrasive to my eyes so it’s dark all of the time anyway. I sleep when I can, almost eliminating night and day.
At least, that is how it was – for longer than I would like to consider. Things are slowly, very slowly, becoming more normal. I’m becoming more diurnal, going to sleep early and rising
early. My brain benefits from the routine and the normalcy even if my social life does not .
Managing migraines is a bitch, as I am a learning. A bitch that requires commitment to lifestyle changes that are not for the faint of heart. Willpower has never been my strong point (I’ve been a nail biter as long as I’ve had teeth), but I’m exercising that muscle as much as I can these days. I feel strong and powerful and healthy, if not boring and monotonous. I have also recently adopted a sickly, high-maintenance kitten and continue to care for my elderly cat named Kitten, thereby cementing my transition to full on cat lady.
At least, it is all paying off. My quality of life is improving, my sensitivity to light and sound is decreasing, and my average daily pain level is slowly getting smaller. These gains do not come without lessons and struggles, however.
3 Lessons Learned from Chronic Pain
Deadlines are bullshit. For example, my three year pain-aversary was on July 3rd, and I intended on publishing this article then. Life got in the way of my plans, though, in the form of a birthday, an engagement party, a kitten adoption, an unexpected visit, and many vet trips. Oh yeah, and too many days given over to the migraine monster. I’ve learned to be easy on myself and to flexible with my schedule. My body is going to dictate my days anyway, it doesn’t help to needlessly fret over it.
You have got to speak up. Owning your story is a way to make peace with it. Even more so, when your story involves illness and pain finding your voice becomes a crucial part of getting the medical care and having the types of relationships you desire. Viewing your relationship with your doctor as an equal partnership will help you stay engaged and confident in your wellness plan.
I’m stronger than I thought, and strength looks different than I thought it would. To some extent, this lesson may be a normal part of growing up. In a life punctuated by pain and migraines, it is a lesson that is glaringly obvious. At my sickest, most vulnerable, and most physically weak is where I found my greatest strength. It became a matter of survival, and I came out the other side a stronger, softer, and (I would like to think) kinder person.
(I’m an overachiever). Time can be your best friend or your worst enemy. Learning and practicing mindfulness has been a huge help to me. Learning to be okay in the moment, even if it is an uncomfortable moment, is crucial. Time, of course, also heals all, and problems seem to shrink rather than grow when seen through the lens of a few days.
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.