Anikah Salim, DrPH, MPH, CPH, has an adventurous spirit. She’s been skydiving, she’s taken pilot lessons to learn to fly a plane, and she’s even gone volcano sledding. In non-pandemic times, she traveled internationally twice a year, going to places as far away as Africa and the Middle East. If you just heard these stories, you might not realize that Anikah lives with migraine pain that affects her on a daily basis.
Anikah, who is in her mid-30s and lives in Maryland, has chronic migraine with aura. The migraine attacks range from manageable to debilitating, and pain has been a part of her life for more than two decades.
As a child, “the pain was so bad, I remember my dad carrying me to the car and into the hospital.”
However, Anikah didn’t receive a proper diagnosis of migraine disease until spring 2015, after nine months of debilitating pain that didn’t respond to prescription or over-the-counter medications.
Anikah was in a doctoral program in 2014 when she became chronic, meaning she was experiencing more than 15 migraine attacks per month. The pain sent her to the emergency room four times in one week, leaving her to wonder if she had meningitis or a brain tumor.
As the months went by, the symptoms continued and she saw multiple doctors. But a head CT, three MRIs, and an optical nerve scan for tumors were all normal.
A neurologist then prescribed her a daily preventive, which gave her relief. A diagnosis had finally been made, but her journey was far from over.
Dealing with daily pain
When Anikah’s pain is at “baseline,” as she refers to it, she can talk on the phone, shop for groceries, cook, and work full-time without taking prescription medications. But when her pain is above baseline, she must take medications, stay in bed in a dark room, and reduce her activity to little or no movement.
Two to three times a week, she’ll have “non-functioning” days with symptoms that may include debilitating pain, light sensitivity, noise sensitivity, nausea, vomiting, blurred vision, and vertigo. And her pain isn’t just felt in her head; it’s widespread with numbness in the limbs, paralysis on one side, dexterity issues, and trouble with concentration and verbal communication.
Anikah regularly sleeps with medications and water next to her bed. And when a migraine comes on, she’s prepared with prescription medications, ice packs, green tea, peppermint, and a heating pad, which she says can help relax the body so the meds can work.
As much as she can, she tries to keep the migraine at bay by being mindful of her triggers—flashing lights, scents, barometric pressure changes, and certain foods. She wears earplugs to protect her ears when the weather changes, and she avoids fragrances. She also has changed her diet.
“My doctor and I took most food triggers out of my diet and added them back one by one,” she says. “We were able to identify a few that would trigger a severe attack.”
The emotional impact of chronic migraine affects her when the disease prevents her from participating in something important to her or someone she cares about.
Connecting with and educating others
Sharing information about migraine and being honest about her pain level has helped Anikah build a supportive close circle. As much as possible, she educates the people around her so they can understand her medical condition.
“People want to be helpful,” she says, but they may not know how to offer support. If someone makes a comment to her like, “You’re not drinking enough water,” she sees this as a chance to share information while acknowledging the comment isn’t coming from a place of harm.
“Someone who loves you does not want to see you in pain, so they want to do everything they can to fix it,” she says. “So it’s coming from a place of concern, which is an opportunity for awareness.”
For Anikah, helping increase awareness includes inviting friends and family to webinars or talks she’s giving at Miles for Migraine. This nonprofit organization offers patient-centric events and programming, like walk-runs, support groups, education sessions, and more. She has also recommended watching documentaries like Out of My Head, so her friends and family can grasp what she is going through.
Managing tasks and activities
Anikah is still learning to live with her condition day-to-day, a process that takes time and requires planning. For example, when she’s at baseline, she prepares for other times when she can’t do everyday activities.
Daily tasks such as vacuuming, laundry, and cooking aren’t difficult for her, she says, but she can’t do everything in one day. Instead, she’ll prepare meals for the week and freeze them so she has food on the days she is not well enough to cook.
This self-awareness and preparation around daily tasks also extends to fun and social activities. She’s learned she can no longer travel for a weekend getaway because the air pressure from flying affects her. Now, she schedules longer trips to give herself time to recover.
While living with migraine disease may require adjustments, it can also bring new opportunities and activities. Anikah listens to audiobooks when a migraine attack affects her vision. She also enjoys painting – a calming and relaxing activity she didn’t know she was good at.
But figuring out how best she can enjoy her life with migraine is still an ongoing process. “It’s okay to continue to figure out how to live with the condition,” she says.
Building a care team
Her support team includes her friends, family, doctors, and people with migraine disease. But building this inner circle, too, took some time.
Dialogue with friends and family led to more awareness about her experience, and those in her circle have been understanding, she says, including her employer.
Since her diagnosis in 2015, Anikah went on to earn her doctorate degree in 2020, and she currently holds a job in the field of epidemiology with the federal government. She has good health insurance, which has allowed her to make choices about what doctors she wants on her care team.
When a particular doctor wasn’t helpful to her, Anikah tried a new doctor. “I’ve had to fight for the care I have,” she says. “But with the care that I have, I am understood and heard.”
In 2019, after receiving training through U.S. Pain Foundation’s Pain Connection program, Anikah started a virtual, global support group at Miles for Migraine. The group, which launched before the pandemic, gives people with migraine a weekly chance to connect remotely and share strategies and experiences. Group members are also in touch with each other throughout the week and in between scheduled meetings.
In this way, Anikah is encouraging other people to share their stories because she remembers the way she felt the first time she heard Shirley Kessel, executive director of Miles for Migraine, speak on a podcast.
“It was the first time since I had been diagnosed with migraine disease that I heard anybody verbalize what I felt.”
Setting a positive mindset
The severity and frequency of Anikah’s migraine attacks fluctuate daily. But she’s learned to accept the fluctuations of life with a chronic disease.
“I had to let go of what I used to be and embrace who I am now,” she says.
A helpful moment occurred when a neurologist said to her: “This is where you are right now. That’s what we are going to deal with.”
A positive mindset is part of Anikah’s daily self-care. This includes daily prayer and reflection. She tries to allow herself the flexibility to adjust and the perspective to keep looking forward.
Her advice to someone newly diagnosed is that this is a journey and the road is not linear. She also encourages people to realize everyone’s story is different and to avoid comparing your life to someone else’s.
“Only look back to see how far you’ve come, not to try to be what you used to be,” she says.