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November 30, 2012

Head Case: Living with Chronic Migraines

To the outside world, glamorous, model-pretty writer Tia Williams seemed to have it all. Inside, she struggled with ugly, crippling headaches.


Photo Credit: Art Partner

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There's me at 34, hooked up to a Demerol drip in a Turks and Caicos hospital, my soon-to-be ex-husband looking at me with unmistakable resentment. I have become a woman who ruins tropical vacations, vacillating between two states of being: obliterated on medication or catatonic from pain. I am a ghost who has disappeared almost totally into her disease.

While most people can look back on their lives against a backdrop of momentous occasions — a Sweet 16 here, a wedding there — mine is punctuated by debilitating, brain-crushingly violent migraine attacks. Here I am at 12, in the school cafeteria, focusing my gaze on a single potato chip, thinking, If I keep staring at it, if I just concentrate, I won't pass out from agony. Then at 22, new to New York City, interrupting my first sexy grown-up date to hide out in the bathroom, stabbing myself in the thigh with an injection of pain meds. Next, I'm 28, at a work lunch, struggling to act normal before stumbling outside to vomit on the street. And at my first book signing, in my hometown of D.C. — everyone I know is there — the pain tearing through my face like tiny Ginsu knives, my signature getting wonkier and wonkier, until I finally excuse myself and faint in the cookbook aisle on my way to the bathroom.

Over the years, I've tried it all. I've been to top migraine doctors, tested every new treatment — yoga, biofeedback, meditation, color visualization, and even Chinese medicine, which involved chugging down specially mixed herbal teas that tasted like incense-flavored sludge. Traditional migraine pills like Imitrex did zilch for me — it was like swallowing Skittles. Nothing helped, and eventually, without fail, my doctors gave up. I was labeled incurable, intractable — and I ended up at pain clinics, languishing in waiting rooms with recovering junkies and cancer patients, hoping that a shot of morphine would get me through the day.

The past six months have been a revolving door of weeklong hospital stays — me, on various IVs, waiting for the throbbing to break. I've had no social life. Even my closest friends have gotten bored ("Whatever, just take a Tylenol and come meet us!"), and potential boyfriends have lost interest because I couldn't keep dates. My 4-year-old daughter has worried over me like an adult, hyperaware of every telltale sign that I'm in pain. When I heard she was having meltdowns at preschool from the stress, my heart broke, a different agony than I normally experience but just as acute.

It was in this state that my new migraine doctor recommended neurostimulation therapy, an extreme surgery available to only the most hopeless chronic pain patients. The procedure came out of pacemaker technology from the late 1970s, the idea being that, instead of taking pills to regulate severe discomfort, you could use stimulation to override pain signals to the brain. Initially used to treat only back pain, over time neurostimulation has been shown to work for migraines, MS, and even depression. The procedure involves implanting tiny, mildly vibrating wires under the skin at the site of the pain (in my case, at each of my temples); the electrical impulses block the pain signals from reaching your brain. My doctor explained that, like something out of science fiction, the wires would run subcutaneously from my temples down each side of my neck, join at my upper back, stretch down the side of my body, and connect to the neurostimulator — like a matchbox-size battery power pack — implanted in my upper butt cheek. This is what would send the electric impulses to my temples. And — wait for it — I would adjust the intensity of the stimulation with a remote control. I would be a real-life bionic woman.

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