Nicki’s Story: Connecting to Joy, Despite Migraine

Over the past seven years, Nicki Nemeth has trekked the Himalayas, backpacked across Southeast Asia, danced at music festivals, camped out under the stars, and lived in a dozen U.S. cities, from D.C. to Honolulu. Her creative, wanderlust spirit has led her on some pretty amazing adventures. But the fact that Nicki lives with chronic intractable migraine makes those achievements downright extraordinary.

Chronic illness radically changed Nicki’s life, but she was determined not to let migraine steal her essential sense of self. “Migraine didn’t change who I was inside, I was still the same person,” explains Nicki, a 33-year old artist and entrepreneur currently living in Eugene, Oregon. “I had to figure out ways to make that ‘me’ possible.” She did so by evaluating her priorities, then figuring out ways to create a life around them. Her success in doing so is an inspiring reminder of the possibilities available to each of us, even in lives constrained by illness.

Here, Nicki shares some of her best lifestyle strategies for life with migraine, including the tools she relies upon daily.

The “Zen Wellness Lifestyle” for Migraine

When migraine struck, Nicki was a 26-year old restaurant server having a blast in Key West, Florida. Laid-back, bubbly and outgoing, Nicki had been living a fun, itinerant life alongside her husband, Alex, whose job in hotel construction had them moving to a new city every few months. But that freedom was threatened when Nicki developed a headache whose symptoms wouldn’t subside. Before long, she was too ill to work.

Frightened though she was, Nicki understood two things. First, that her new situation would require making unforeseen changes, at least for the time being. And second, that she was determined not to miss out on the things that make her happiest.

“Music and travel,” she says with a laugh. “I’m a party girl!”

Nicki set about finding workable strategies, each of which would become an important piece of what she calls her “Zen wellness lifestyle.”

Therapy. Mental health is core to Nicki’s migraine management, especially because emotional stress is her biggest trigger. “At first I was really hard on myself,” she recalls. “I felt no matter what I did, I was failing, because the pain was still there.” Therapy has helped Nicki deal with negative self-talk, guilt, shame, and depression, and to steer herself toward helpful thoughts and actions.

Meditation. The practice of yoga and meditation helped Nicki learn to remain calm, neutral, and accepting when confronted with pain. “It was such a fundamental change in the way I approached pain,” she says. “The pain and symptoms are still there, but I don’t fight it. I’m removed and watching it all happen. I separate myself from it.”

Being prepared. For someone who lives on the fly, planning takes a big role in Nicki’s life: “Taking the time to plan things beforehand really reduces my anxiety. I need to know that when I’m in a pain flare, things are set up for success.” That includes:

• • • Meal prep. There are always meals in the freezer for when cooking is too difficult.
    • Pain relief kit. It’s always stocked and ready with Nicki’s acute meds, so there’s no need to scramble.
    • Pacing herself. Before a trip or a move, Nicki takes two full weeks to pack, allowing her to remain calm and unhurried as she plans out the details.

Asking for and accepting help. Living with migraine requires support. Learning how to communicate her needs, especially to her partner, has been essential. “I didn’t always want people to help me, but I can trust Alex,” says Nicki. “It’s hard not to feel like I’ve been a burden at times. But Alex appreciates that he can do for me. He’s been my rock.”

A flexible mindset. Migraine is unpredictable, so Nicki’s ability to stay calm and adaptive in the face of obstacles has been key, especially while on the road. For example:

• • • In Hawaii, Nicki found herself triggered by the heat, humidity and sunlight. “Basically I was afraid to go outside,” she remembers. So she looked for pockets of opportunity, such as early-morning hikes, when the sun was still low; and sunsets on a favorite beach under a shady tree. “And always with sunglasses.”

• • • Seized by a migraine attack at a rainy Oregon music festival, Nicki chose to remain tucked into her sleeping bag rather than head home. The pain finally disappeared on the festival’s last day. “Next thing you know, I’m up at the stage, and everyone’s dancing in the mud, carefree,” she says. “And that’s the part I remember, not the pain.”

Nicki’s Lifestyle Toolkit

Every day is different for Nicki Nemeth as she navigates her changing health and vagabond life. But she makes sure to use certain tools each day as part of her migraine management routine. Here are her core daily strategies.

Medication and supplement routine. Preventive medications: divalproex sodium (Depakote) daily, Emgality monthly injection. Supplements: high doses of magnesium and vitamin B2 (riboflavin) daily.

• • • “That’s really critical. I suck at routines, so I set alarms. My alarm for my evening medication is set for bedtime, and that also keeps me in my sleep routine, which is good for my head.”

Mindfulness practice. Yoga, meditation, painting, journaling, tarot card reading.

• • • “I get in some sort of mindfulness practice each day but I like to keep it creative and interesting. Like, I keep tarot cards on my dresser, and they’re pretty — I like looking at the artwork — so I’ll shuffle the cards and it gives me something new to contemplate every day.”

Exercise. Duration: As long as it feels good, or until it stops being interesting.

• • • “Alex and I have started stretching together, which has been really nice. The other day we were trying to do some gentle stretches for couples that we found online, and we kept falling over and not being able to do the poses, and just wound up laughing. And that’s a good exercise too, laughter.”

What healthy behaviors might help manage your migraine? Find them in the Care Tuner app.