I’m an aspiring travel writer and, most of the time, that means writing about fun and interesting places I get to live in and go to as a serial expat. But today I’m writing about a different kind of journey, a deeply personal, internal one. This is a post on migraines that I’ve been meaning to write for a long time, and it’s a lengthy one. I hope it reaches other migraine sufferers, wherever they are on their personal journey to provide insight, ideas, and solidarity. Hang in there and don’t give up on seeking out the help you need.
Ok, buckle up.
I had my first migraine when I was fourteen. I walked into the kitchen and announced to my mother that I was blind in one eye. A creeping darkness ringed with colored lights had gradually consumed the entire right side of my vision. This was not like winking or covering one eye with my hand; it was simply an absence of sight. Radiating along my right arm, I felt a tingling numbness starting at my fingertips and pulsing upwards in sections towards the right side of my face. My mother immediately rushed me to the emergency room where the doctor’s diagnosis was a quick and unequivocal, “It’s just migraine.”
Just a migraine? My teenage self was both relieved and indignant that my affliction was not a dramatic brush with death, but something as unremarkable as the common cold. At least, that’s what the doctor seemed to think.
A few years and mild migraine episodes later, I was at my then boyfriend’s apartment, helping him clean. The fumes from some chemicals I was using first gave me a terrible headache, which then turned into the flickering lights and blindness I quickly recognized as a migraine. Calmly, I lay down in a darkened room to wait it out. A few minutes later I sat up filled with sudden panic, as I realized that I couldn’t breathe. Each breath took a concentrated effort to will in and out. Calling for my boyfriend, I could barely string coherent sentences together. I was experiencing my first, but not last, experience with “word salad” where the words I wanted to say came out as entirely different ones. As we got ready to rush to the emergency room, I couldn’t tie my shoelaces and could barely see. We were convinced it was a stroke.
At the hospital, the diagnosis was the same, migraine, but this time I’d added confusion, difficulty speaking, and a panic attack to the symptoms. It was ultimately the panic attack that had caused most of the drama. As I calmed down, a devastating headache hit me on the left side of my head- my migraines flip-flop between right and left, giving both sides of my brain a turn. Despite the kind words of the doctor and nurses, my inner voice was again screaming that I was dying.
This time, the hospital took a CAT scan and recommended I have an MRI done as well as see a neurologist. All the tests showed my brain to be perfectly normal, but my excellent neurologist took my case seriously. I was lucky. Since then, I have heard, and unfortunately experienced my own, horror stories of doctors not believing migraine patients and not working with them to provide appropriate care.
She listened carefully to me and prescribed me Nortriptyline, a preventative medication that stops migraines from happening in the first place. Noting my symptoms, she diagnosed me as having “complicated migraines,” not exactly a technical term. That was my first glimpse into how little specialists know about migraines at all. My migraines are somewhere between the typical aura with a localized headache that many sufferers experience and a Basal migraine that starts in the brain stem and follows a specific pattern of symptoms. My symptoms (visual aura, numbness, difficulty speaking, severe headache) tend to fluctuate with them happening at different points, durations, or not at all. Basically (basalically?), it’s complicated. It means that I can’t take typical over-the-counter and prescription medications like Excedrin Migraine, Zomig, or anything with Triptans, as they could prompt a stroke. For the same reason, I can’t be on the full birth control pill, as hormones have been correlated with increased prevalence of stroke in chronic migraine sufferers.
My journey with migraines began in earnest at that point. I learned that there are a few different treatments for migraines, but that almost all are off-label, meaning that medications used for migraines are originally designed and FDA approved to treat something else. We are essentially throwing drugs into a black hole called Migraine and seeing what comes out the other side. Nortriptyline and its sister Amitriptyline are tricyclic anti-depressants, now more commonly used to treat migraines than depression, despite being off-label. They switch something off in the brain that lessens the occurrence of migraines. Interestingly, though, the FDA has not formally approved them for treating migraines.
For a couple years, I successfully used Nortriptyline to prevent migraines, including during a jam-packed college schedule and then study abroad in France. With no episodes in all that time, I eventually worked with my neurologist to move off the medication. I had become increasingly concerned at the idea of throwing quite drastic drugs at a condition that even my neurologist knew little about. Meanwhile, Nortriptyline comes with significant side effects: sensitivity to sunlight, drowsiness, bad interactions with alcohol, weight gain. She agreed that it would be best to use the lowest possible treatment that would effectively prevent my headaches. Enter alternative strategies like yoga, massage, diet, and acupuncture.
The FDA has approved two kinds of drugs to prevent migraine headaches: two anticonvulsant drugs, topiramate (such as Topamax) and valproic acid (Depakote); and beta-blockers like Propranolol and Timolol that lower blood pressure. I’ve tried both of those and found them to be a disaster. About a year after working myself off Nortriptyline, my migraines came back in full force. Returning to my neurologist, she suggested we try Topamax to see if the side effects would be less severe. Unfortunately, it was far worse.
Topamax made me feel like I was in a dream state, miles away from everyone, shouting across an abyss. Shortly after taking it, I remember sitting down to play the piano and being unable to progress past one measure- I just kept playing it over and over again as I became increasingly hysterical (see comments about hysteria below). In that case, perhaps over time, the side effects would have lessened and eventually it would have worked for me. I’ll likely never know because I have no intention of trying it again.
At that point, I was determined to manage my migraines on my own. I spent a wonderful summer studying in Sevilla, Spain without a migraine in sight. I found that low stress, good diet, and regular sleep were my medicine. As I began a new job in Sacramento, migraines began to dog me again, but I found I had more tools to deal with them. I better tracked and limited my triggers- red wine, chocolate, strong cheese, stress, sudden changes in weather. I could almost predict when one might happen. That said, it did take daily management including informing my boss that if I ever got a migraine, I’d have to go home immediately. For people around me, the only clue that I was in pain was my white-as-a-sheet face.
I came to understand that migraines are a chronic condition. They don’t appear occasionally but are always in the background. A full migraine episode lands me in bed and then plagues me with a terrible hangover feeling for a few days after.
Along with sudden, stroke-like migraine episodes, I suffered from more frequent and persistent headaches, the worst ones lasting up to 72 hours. Without preventative medication, I’d have a headache 5 out of 7 days of the week. But for a long time, my resistance to scary drugs and concern that doctors couldn’t really understand my pain dissuaded me from seeking more help.
Life doesn’t stop for headaches. I figured out which headaches I could work through and which I could not. Given that I more often than not had a headache, you might think that I’d shrug off other people’s. The opposite happened. Interestingly, I became extremely empathetic to anyone suffering from a headache. If a co-worker or friend said they had a headache, I’d feel so strongly for them, knowing just how awful it is to experience pain that no one else can see. Go home, rest, hydrate. I’d only take my own advice on the worst days.
Again, I was lucky. I had supportive colleagues, a relatively low-stress job and volunteer gig, and a supportive network of friends and family. I began to think of my migraines as a friend, an annoying one likely show up uninvited at the worst times, but still, a part of me. They were an indicator of how I was doing as I left my job, traveled, went to graduate school in Italy, traveled, went to graduate school in DC, and ultimately landed a new job. I found ways to cope.
Until I couldn’t.
A combination of long working hours in front of a computer, sudden weather shifts, life changes like getting engaged and married, and contemplating a big move overseas to China pushed my migraines into over-drive. In the past, though constant headaches plagued me, I only suffered a full episode every couple months, once a month at the very worst. Sometimes I’d go as much as six months with no incident. Suddenly I was suffering from migraines every two weeks, then every week.
Severe pain, especially chronic pain, is debilitating. Severe pain in your head makes you feel mentally as well as physically sick. I was so tightly wound, but could not let go. The pain was not just in me, it was me. I saw the world through a searing red ring of fire. I was emotional, irritable, and, honestly, scared of the constant possibility of getting a migraine at work, on the metro, with friends.
One day, I had the strangest sensation while sitting at my desk in my work’s open office. I could suddenly hear the click-clacking of every single person’s keyboard magnified and drowning out all other sounds. “I think I have to go home,” I mumbled, my voice and my co-workers’ voices sounded far away, as if I was under-water in a deep pool. I’m convinced I experienced some kind of auditory aura.
Every time I have a migraine, there’s always a part of me that reverts back to being fourteen and terrified I’m dying. It’s like when you’re sleeping and you wake up suddenly from a dream. You know almost immediately it’s not real, but you still feel all your feelings. I had long been able to remind myself, “it’s not real, you’re not dying, you’re ok.” It was becoming harder and harder to do that. My migraines were getting worse and increasingly unpredictable.
My first attempt at seeking help launched me into my own horror story. I went to see a relatively respected and, at seventy years of age, apparently experienced neurologist who prescribed the beta-blocker Propranolol to me. I entered his office simply asking to be put back on Nortriptyline, but he was doggedly focused on Propranolol. The drug significantly lowered my blood pressure, ostensibly to relax the brain’s blood vessels. In my case, it did nothing for my migraines, though I’m sure it has helped others.
Like many migraine sufferers, I have extremely vivid dreams. As I’ve long suffered from nightmares, I have also learned how to turn them into lucid dreams that I can shift or wake up from. Propranolol turned my dreams into inescapable nightmares of intense violence and terror. Most of them ended with me bludgeoning an attacker to death only to find their bloodied corpse reanimated and laughing in my face. One of the worst involved a dystopian landscape in which an It-like clown with sharp teeth was chasing me. Stephen King, move aside. Others moved me to sleep-walk. One night, I flung myself out of bed to escape a couch that was trying to eat me. I still credit my husband with rescuing me from the jaws of death, as he bodily pulled me back into the bed. Some of these episodes were silly, some funny, but despite telling friends in a cheerful tone about my most bizarre nightly shenanigans, inside I wasn’t laughing.
Since Propranolol lowered my already healthy blood pressure, it left me feeling weak, nauseous, and panicky. I started most mornings gagging into the toilet and most afternoons with a sick feeling of foreboding below my ribcage. Combining those side effects with work and life stresses was a vicious cocktail.
The doctor reasonably suggested I have another MRI done since my last one was ten years earlier. I readily agreed, not having had a bad experience before. This time, though, the machine was a full body tunnel that threw my claustrophobia into over-drive. I confronted an irrational, internal panic that I was being buried alive in an MRI machine. The entire experience left me on the edge of a nervous breakdown. Not the doctor’s fault, but certainly not helpful.
He also had me travel miles away on two separate weekends to run other expensive tests that turned out to be a complete waste of time and were not fully covered by insurance. Don’t get me wrong, it’s a good idea to be tested when suffering severe headaches, but neither of these tests was relevant to my situation.
I was increasingly convinced that my well-meaning, personable but utterly incompetent doctor was simply prescribing me with a one-size-fits-all treatment for a condition that is as varied and complex as the 7 billion human beings on our planet. I carefully and repeatedly explained to him that I suffer from complicated migraines, so could not be on triptans due to the risk of stroke. For some inexplicable reason, he still prescribed me Zomig, which I, fortunately, determined had triptans in it myself. When I alerted him of this, he responded with some inane and patronizing drivel that since a previous doctor had warned me off triptans, he would follow her advice to maintain his good karma… That was the last time I saw him, for obvious reasons.
After three months of hell, I finally switched to a different doctor, a brilliant, empathetic, and highly-skilled woman who I am glad to recommend via DM if you are interested. At last, I had found a doctor who not only listened to me but who understood and validated my experience. My long-ago neurologist from my college days had this doctor’s competence, but not her skill at explaining my condition in ways I could understand. Giving me an incredible amount of her time, she carefully designed a treatment plan for me that did not involve Propranolol. In fact, she told me that the low dose I was on would have no effect on my migraines. She also championed my steadfast refusal to take triptans, confirming my fears.
Six years after moving off Nortriptyline, the good doctor moved me back onto a tricyclic anti-depressant, this time Amitriptyline as it would better help me sleep. She also gave me a shot to the base of my neck designed to numb the area from which my migraines develop. I recommend trying this shot; its duration can be unpredictable, lasting from just a few weeks to three months, but it brought me a lot of relief, had no side effects, and was thankfully covered by my insurance. Both of these methods reduced my headaches and migraines seemingly over-night. She also prescribed me a painkiller to take at the onset of a migraine, which actually stops or lessens the symptoms. Finally, someone had given me a way out from the crippling pain and desperation. I had a strategy and a supportive doctor who was also willing to stay in touch online during my time overseas.
After some bumps in the road, my migraine journey has hit a relatively smooth patch. Living in South China presents new challenges like the bad air and sudden temperature shifts in the tropical climate, but overall I’ve been doing much better. Though I’d love to be drug-free, at this point, I need to manage my pain through medication along with my daily yoga, regular acupuncture, and occasional massage. I have also significantly cut down on trigger foods, going chocolate-free at the start of 2018 and avoiding shrimp, alcohol, and strong cheeses. I’ve been migraine-free since November, perhaps because of the chocolate ban, though still have regular headaches.
There are so many ways in which I am fortunate. My migraines are not that bad. I can manage them while there are others who suffer daily. My husband is beyond supportive. He is the one who encourages me to seek help, puts cool cloths on my head, rubs my back, and simply lays beside me on the worst days. He has legitimized my pain as a chronic condition that requires treatment and even took time off his own work on that particularly bad day when keyboards clicking were the precursor to one of the worst migraines I’ve experienced.
I’ve lived a charmed life in developed countries with excellent medical care. My migraines are not that bad. I can manage them while there are others who suffer daily. I have health insurance allowing me access to expensive specialists, treatments, and tests. I’ve had steady full-time jobs with paid time off and supportive bosses. I’m educated and able to advocate for myself after doing my own research on the internet I can access at a price I can afford. I’m a relatively affluent white woman who is more likely to be believed and helped.
Believing migraine sufferers is hugely important. For that matter, believing anyone suffering from internal physical or mental conditions is paramount. Just because you can’t see an illness, doesn’t mean it’s not there. Just because someone is high-functioning doesn’t mean they aren’t suffering. The majority of migraine sufferers are women, which has led to harmful and deeply patronizing attitudes towards headaches and migraines. Historically, doctors, including Freud, defined (um made up more like) the uniquely female mental condition of hysteria, stating that women were neurotic and could not handle life’s stresses. Those women were not hysterical; instead many were suffering the stroke-like symptoms of a migraine.
The good news is that neurologists are continuing to study migraines in-depth with interesting articles, studies, and potential new treatments appearing regularly and the stigma around migraines decreasing. That said, it’s likely going to be a long time before a holistic treatment for migraines is available, because so much is still experimental and unknown. So please, resist the urge to tell your migraine-suffering friend/loved one to simply try that one new drug that will solve all their problems. It won’t.
Please also avoid telling them to simply stop eating/drinking that one thing. That’s not how migraine triggers work. In this case, triggers are like building blocks stacking up in a wobbly tower; it’s ok to have a little chocolate, a little red wine, endure even a lot of stress, but as more triggers build up together the more likely it is that they’ll push a sufferer over into a full-blown migraine. It’s also difficult to identify triggers, because everyone is different and you usually don’t feel their effects right away. It has taken me years to figure out that if I eat shrimp, about 72 hours later I might have a headache.
Your care, compassion, and listening ear mean the world. Legitimizing your friend or loved one’s experience, need for rest, and ability to put work aside during a bad headache or episode is hugely helpful. They may feel guilty about it and need that little encouragement (I know I do).
It’s relatively easy to describe the localized headache, numbness, tingling to non-migraine sufferers. And this video from Excedrin does a decent job explaining the aura. Mine appears in bright colors that ripple along the edge of blank nothingness. The colors are like the iridescent rainbows on the surface of spilled oil. They pull at the world like the reflection of the sky in a glass skyscraper, each window refracting the light a little differently.
Sometimes, I suddenly see a perfect example of a migraine aura reflecting in a tall building, in a puddle on the ground, in a sci-fi show showing imaginary spaceships rushing through a wormhole at light-speed. I’ll yell to my husband, “That’s it! That’s what it’s like!”
I’ve heard that some female migraine sufferers stop having migraines after they have their first child (others may start then, it’s so unknowable). That was the case for my aunt, so here’s hoping if and when I have babies, that will be a beautiful side effect. Till then, I’ll continue to manage them and enjoy my increasingly frequent halcyon headache-free days under my current treatment plan.