Moving Across the Country to Gain Control Over My Chronic Migraines
I have a confession to make: I hate Facebook memories. Rather than return me to moments of happiness and reminiscence, they spark regret, sorrow and a longing for what once was. As someone with a chronic illness that developed in my early 30s, these randomly-generated memories sting. I don’t want to relive these spots of time.
Today’s Facebook memory seemed benign enough: it was a casual photo of my friends and me lounging under the shade of tiki umbrellas; we were on holiday in the Hamptons. Seeing my friends’ once-common faces felt like a sucker punch. I was healthy then, New York was my home and I was unstoppable.
Several years ago chronic migraines tightly wrapped their arms around me, seizing me into a world of constant pain, dizziness, nausea and random symptoms that had zero rhyme or reason. And while I had access to incredible treatment and doctors in New York (my neurologist was one of the leading vestibular specialists in the country, and NYU provided me unparalleled support), the city itself hurt me.
Riding the subways exacerbated my vestibular migraines with such severity that strangers often carried me off the train. I recall New York’s finest coming to my side, asking if I needed assistance. Unfortunately, thanks to aphasia, I couldn’t even stutter out a response. Sometimes they thought I was overdosing or having a stroke. Always prepared, I would open the Notes app to the message that read, “I’m not having a stroke, it’s a severe migraine. Can you help me to a bench?”
Once, when taking the Q-train home from the NYU hospital, It’s Showtime! performers triggered a spell so severe I ended up violently convulsing on the train. My seat-mates reacted instantly, assuming I was having a seizure. Someone shut off the pulsing music that had triggered my reaction, and eventually I was able to stutter out that I was in the middle of a severe migraine. Rather than apologize, the subway performers casually told me to take an aspirin and avoid places with loud noise. Their condescension stung. Had I had my wits about me, I would have pointed to the MTA courtesy campaign signs hanging above us: “Poles are for your safety, not for your latest routine.” Fellow passengers carried me off the train once we reached my stop. As usual, I assured them I did not need an ambulance.
Overall, New Yorkers surprised me with their kindness and caring. I always could count on them to help me when my environment overwhelmed me. From strangers helping me cross a busy street to my doormen carrying me to my apartment, New Yorkers behaved as New Yorkers do: with generosity and spirit. I loved my city and was proud to call myself a New Yorker.
Unfortunately, it was making me sicker. I wasn’t living in New York, I barely was surviving it. I couldn’t tolerate the subways, the ever-changing weather systems, the lights that brightly glared as I took a taxi home at night. Everything was a trigger. There are only so many times a girl can throw up on a subway platform before deciding enough was enough. My condition was pushing me into a corner, and so I began to plan my escape.
Knowing that weather and barometric pressure change was my biggest migraine trigger, I started my research with cities that had little-to-no weather change. Honolulu, St. John and Los Angeles topped the list. For a few days I searched for little island bungalows, peaceful places near Cinnamon Bay and the Virgin Islands National Park. My doctor would just be a flight away…but what if emergency struck?
I decided upon Santa Monica, California. Not only did it have little weather variation, it was a 15-minute drive from one of the top neurological hospitals in the country. Plus, UCLA had a vestibular rehab center in the heart of this coastal LA-offshoot (I could walk there!). And, once I fully recovered, I would be able to reestablish my career in fashion and digital marketing. Just like that, without ever visiting the city, my mind was made up: I was moving to LA. I made a quick visit to the west coast so I could look for apartments and get a feel for the place. Four days later I signed a lease. This was my first visit to LA and three weeks later I would be calling it home.
My neurologist and I discussed the risks. Change, she explained, can have a drastic impact on one’s migraine cycle, sometimes making it far worse. There wasn’t much research that supported relocating helps improve a migraineur’s chronic condition. And, being summer, my migraine cycle was just starting to improve. Still, I was determined. Desperation can have the power to relocate someone to a new city and life.
Before and during my move, I stuck to routine as much as possible. I maintained lists upon lists, regularly followed up with UCLAs neurology department and gradually sold all of my furniture. My movers were incredibly supportive as they packed up my books, art and downsized wardrobe (who needed 15 pair of tights when living in perpetual spring?). They patiently listened as I stuttered and sputtered out instructions. My doormen cried as I hugged them goodbye. And just like that, my two pets and I boarded our flight to the west coast.
In the beginning I religiously stuck to my routines. I walked several miles each morning, continued with my labored gym sessions and worked in the afternoon. My first few weeks progressed without much incident. I relished lazy afternoons spent sleeping on the beach. Was I getting better? Was this the answer?
Migraines, I’ve learned, are a fickle thing. Somehow, without much warning, my migraine cycle took a violent downward spiral. Walks down the street felt hallucinatory as one palm tree would multiply into two, then three. I couldn’t walk through a grocery store without being struck with aphasia. My legs would go completely numb and I would lose the ability to walk. What was happening?
I called UCLA daily, asking if my newly-assigned neurologist would be able to see me sooner. They put me on a waiting list, then moved me up on the list. I searched for therapists, leaving heartfelt messages on their machines. I emailed my New York neurologist, who called in a prescription for Diamox and explained that would help with my dizziness. I took more naps on the beach and got a toasty brown tan. I found a therapist who also had migraines. My LA friends were too busy or too far away to visit; I missed my friends in New York. I missed the neighborhood I once called home. I reassured myself that change was temporary and I would be able to adapt.
Finally, UCLA scheduled an appointment, one month earlier than originally planned. I cried with happiness. My new neurologist was a headache specialist and knew of my doctor in New York. This new doctor was young and eager to learn more about vestibular migraines, as I was her first vestibular migraine patient. She introduced me to the hospital’s vestibular specialists and consulted with them about my treatment. They decided that, in addition to vestibular migraine, I also had severe migraines with brainstem aura. I began Botox and returned to vestibular rehab therapy. I got a medical marijuana card and began taking CBD oil every morning and night. Between my therapist, new neurologist and treatments, I finally was making progress. I also met with the neurology department’s nurse practitioner who introduced me to a ketogenic diet. Structure and a support system were returning to my life.
Winter came and so did the rain (as did my barometric pressure-triggered migraines). I learned how to navigate the Big Blue Bus and started taking it to my therapist’s office. I lost my final East Coast client when their company folded, and I found myself unemployed for the first time in my life. Tears were shed. Wasn’t I supposed to be getting better? Wasn’t life supposed to be getting better? Facebook teased me with happy memories of yesteryear. My stomach curdled at the life that once was. I envied the old me, I envied friends whose lives appeared fuller and more satisfying than mine. One stormy January night I ended up in the Santa Monica emergency room. Part of me felt like I had failed myself. Wasn’t I supposed to be getting better?
Still, I persevered. I dated several guys but didn’t feel enthused about any of them. I took the light rail to my friend’s home in Los Angeles and watched movies on his couch. Sometimes I plucked up the nerve to see a movie on my own. I trialled more drugs, eventually landing upon a mix originally intended to treat Alzheimer’s disease, PCOS, and fibromyalgia. I was lonely. More tears were shed on my therapist’s couch. People explained that it was difficult making friends in LA, especially when one can’t drive. I turned 35 and celebrated with my mom and sister-in-law.
We rode the Santa Monica ferris wheel and toasted champagne over candlelight. UCLA connected me with their ketogenic dietician who helped me refine my already-strict eating plan. I feverishly searched for a job – anything that could keep me busy and occupied. But I remained unemployed.
Months passed and I found myself back in the nurse practitioner’s office. It was a warm, sunny May day and I finally was feeling better and more alive. Thanks to my Alzheimer’s drug, word recall and memory had returned. I had started writing again and was invigorated by it. A few days before, I had visited Universal Studio and was able to ride rollercoasters – this was my biggest sign of improvement.
Curious to know how I had progressed since the winter, my nurse practitioner asked me to pull up my migraine history for mid-January through mid-March and mid-March through mid-May. My attack days had reduced by 60 percent. More than that, my average migraine had reduced in duration and intensity. For the first time in several years, I had hope.
Do I still get migraines? Yes. But I’m learning how to not let them take over my life. I’m learning how to let them buzz in the back of my head while I focus on other things, whether it’s gardening or taking a walk on the beach. I’ve finally found a group of girlfriends who lend laughter, distraction and camaraderie. And while I have yet to find employment, I’m interviewing more than ever and cannot wait to start working again.
Progress, I learned, doesn’t happen over night, especially when it comes to migraines. Chronic migraineurs are so desperate for a quick fix, but it’s a dream that continues to allude us. Was moving across the country an instant cure? No…but this is the best and most hopeful I’ve felt since being diagnosed with chronic migraines two years ago. Moving forced me to live slower and not feel like I have to be the best at everything. In a strange way, isolation and unemployment forced me to only prioritize my health, something I never had done in my life. I now wake eager to face the world and the challenges the day sets upon me. And I can’t wait to make new memories and see what the next year will bring me. Who needs old memories when new adventures are on the horizon?
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Thinkstock photo via DAJ.