by Emily Waldman
Nahid Shukralla can trace her journey with migraine disease all the way back to her childhood in Bahrain, the small Middle Eastern country where she was born and raised before making her way first to Chicago, where she studied medicine, and then, later, to Canada. She recalls coming home after school in sixth grade with episodes of severe abdominal pain that neither her parents nor her doctors could diagnose. In hindsight, she believes that she was suffering from abdominal migraine, a migraine variant which most commonly affects children—and for her, the first signs of a disease that has played havoc on her life ever since.
When Nahid was eighteen, she experienced her first ‘classic’ migraine attack, which began to occur regularly prior to her menstrual cycles. While they have changed and progressed somewhat over the years, today she can recognize the different phases of her migraine attacks, and her descriptions paint a vivid and detailed picture of a disabling disease.
In the prodrome phase, she says, she gets very tired, to the point where “even going to get a glass of water is exhausting.” Sometimes that fatigue is accompanied by terrible nausea, or blurred vision, which can be scary if it happens while she is driving. While she did not recognize her visual auras for what they were until about a decade ago, Nahid also occasionally experiences auditory hallucinations as part of the aura phase of an attack. “I’ll wake up from sleep so certain that I heard a loud noise, like the slamming of a door or a window, that I’ll check the house for signs of an intruder before realizing it was a migraine aura,” she shares.
When the attack starts, Nahid experiences many of the debilitating symptoms that are common among people living with migraine—severe head pain, nausea, vomiting, allodynia (a painful sensitivity to touch), and sensitivity to light and sound. While she has never been diagnosed with hemiplegic migraine, she will sometimes experience a sensation of numbness in her face, as well as mild weakness in the limbs on one side of her body.
Still, she says, her migraine attacks were episodic at first, and she found ways to cope with them. As time went on, however, the frequency of Nahid’s attacks increased steadily. In 1993, when she began her medical school residency, she was diagnosed with chronic migraine.
“It was very difficult to manage at the time,” shared Nahid. “You know, we didn’t have our anti-CGRP medications and other new advances. The frequent migraine attacks affected my studies and my job.”
Nahid tried various preventive medications, including beta-blockers, calcium channel blockers, and anti-epileptic drugs. None of it helped her. Then, the year after she was diagnosed with chronic migraine, Nahid and her husband learned that they were expecting a baby.
For Nahid, being pregnant seemed to worsen her migraine attacks. She was admitted to the hospital several times because of her severe and unrelenting symptoms.
“I remember at one point in the pregnancy, five or six months in, I had a severe migraine attack…I couldn’t move my head from left to right. I couldn’t lie flat in my bed because it made the pain worse. By the third day of this, my husband took me to the emergency room, where they admitted me,” Nahid recalls. Even then, she says, the doctors were hesitant to treat her pain because they weren’t sure if certain medications would harm the baby. Eventually her doctors decided to try giving her an antihistamine known to be safe in pregnancy, which provided her with some relief. They also decided to put her on a beta-blocker called propranolol to try and get her attacks under control. Because of potential effects to the fetus, Nahid was put on bed rest for the remainder of her pregnancy. She had to take the time off from her job and her residency, which caused her significant stress. In the end, Nahid’s son was born completely healthy. Still, she says, “it was a very tricky situation.”
Nahid managed to juggle her various responsibilities as a doctor, a student, a mother, and a wife, even with her frequent migraine attacks. Still, chronic migraine weighed on her heavily. At the end of her residency, she threw herself into preparations for her board exams—intensive tests that took place over the course of two six-hour days. As they approached, she worried about what would happen if she experienced a migraine attack during the exams.
“What if I get a migraine attack?” she would think. “What if, after all my hard work, I have blurry vision during the exam when I am supposed to be interpreting slides?” Nahid’s specialty was in pathology, which she describes as a highly visual field largely consisting of studying and analyzing slides of tissue samples. “For any student, that’s a nightmare, getting a migraine during an exam. And at the time,” she adds, “there were no accommodations available to me.” Despite her worries—and a migraine attack she managed to treat with NSAIDs—she completed her exams successfully and became a board-certified pathologist.
After completing her board exams, Nahid and her husband—also a physician—moved their small family to Canada, where they settled in Ottawa. There, Nahid found a new headache specialist, who prescribed her amitriptyline to prevent her migraine attacks. It only helped minimally, she said, and it caused her to gain weight, so she and her doctor decided to discontinue it.
“Migraine was a very big part of my family’s day-to-day life,” Nahid recalls, “and eventually we decided that it would be better if I left my job.” By this time, Nahid had developed some other health issues, which exacerbated the difficulties she already experienced living with migraine. She and her husband had also added to their growing family when Nahid gave birth to their second child, a daughter, in 2002.
While it was difficult to sacrifice her career because of chronic migraine, Nahid looked at it as an opportunity to pursue something she had loved doing since she was a teenager: creating art. She had always been artistically gifted and had even considered studying art instead of medicine; now, she decided to pursue art as a creative outlet and hobby. She took classes and learned different techniques and styles, from charcoal sketches to colourful landscapes.
In 2014, Nahid started noticing something new: strange, visual disturbances and distortions which would take place prior to a migraine attack. She would see them even if her eyes were closed; they were so intense, she says, they would often wake her from sleep in the early hours of the morning. “And then I realized—these were migraine auras.”
In fact, she realized she’d been having auras for as long as she’d had migraine, but they had changed. Now, she could recognize them for what they were. She decided to attempt to use them as inspiration for her art, so she began keeping a notebook by her bed in order to sketch or describe what she saw during an aura. Later, after the attack had subsided, she could create a rendering of the aura on canvas.
Nahid tried using several different mediums, but it wasn’t until the COVID-19 pandemic began in 2020 that she taught herself to use the app Procreate to not only create digital representations of her migraine auras, but also to animate them.
“My auras are moving shapes and colours. They aren’t static,” Nahid says, explaining why trying to paint her auras on canvas was frustrating. “After I learned how to make digital paintings of my auras on Procreate, I thought, well, maybe I should learn how to animate them. And when I did, I realized—wow, this is a game changer. This is what I was looking for all along.”
Eventually, Nahid started a public Instagram page to display what she calls her “migraine art.” The response was something she hadn’t expected.
“From the beginning, the response was amazing. People were encouraging me. I started to get comments saying, ‘oh, I saw this same kind of aura a few days ago!’ or ‘I could never describe what was happening to me until I saw your art!’ I just couldn’t believe that.” To date, Nahid has created artistic representations of more than 185 of her migraine auras. She doesn’t post all of them; she tries to keep her art very true to her experience, which means that sometimes her creations are not particularly visually appealing, or are very similar to auras she has already posted. But she has every one of them documented.
Creating art inspired by migraine has changed Nahid’s relationship to her disease. Sometimes, she goes through periods where she doesn’t experience visual auras; instead, she notices extreme fatigue and nausea before the attack starts, or even auditory auras. In these instances, the misery of migraine feels much more acute to her. Being able to make meaning of her migraine attacks through creative expression—not to mention the way that sharing her migraine art allows her to hear from and connect with others who live with the same disease—makes a difficult and painful condition much easier to bear.
Still, even though turning her migraine auras into beautiful pieces of art is helpful, Nahid is grateful for the relief she experiences from recent advancements in migraine treatment, particularly the CGRP monoclonal antibodies. When she was prescribed her first CGRP, she says it changed her life.
“I thought, oh my gosh, this is what life can be like without daily head pain!” Unfortunately, after about a year on medication, it stopped being effective. Nahid’s doctor switched her to another option, and she had the same experience; it was highly effective at the beginning, and after about a year, that effectiveness waned. Clearly hoping that the third time would be the charm, her doctor prescribed her another option. While her attack frequency hasn’t changed much and while she still does experience migraine attacks about 15 days a month, she has found the severity to be much improved.
“On a scale from one to ten, I find my migraine severity rarely goes beyond a three. Occasionally a five. That makes a big difference,” she shares. After a lifetime of chronic migraine, she says, having around one ‘bad’ attack a week is something she can handle, especially now that her symptoms are so much better on the other days. Nahid finds that, overall, the pain, nausea, and sensitivity to light and sound are much less severe, and shared that, while she used to have no choice but to frequently go to the emergency room when her attacks were too severe and long-lasting to treat at home, she has not had to go to the emergency room once since starting the CGRP antibody medications.
Nahid finds it frustrating that, despite this clear proof of the efficacy of the CGRP antibodies, she is forced to jump through hoops just to have access to this treatment that has given her so much relief. Ever since she first started taking Aimovig, and even now that she has been receiving Vyepti infusions regularly, her insurance requires her and her doctor to periodically fill out questionnaires and submit prior authorizations, which take time to be processed.
“I hope they make it easier, now that there is so much evidence that these newer medications (the CGRP monoclonal antibodies and the ‘gepants’ used for prevention) should be the first-line preventives for migraine. I hope they make it more easily available and accessible…especially knowing the burden of migraine on people’s lives.”
Nahid feels deeply fortunate to have found a medication that provides her with so much relief, even if trying to access it can be an ordeal. She also feels fortunate to have an understanding and loving support system, even though migraine remains so misunderstood and stigmatized by society at large. Her husband and children, especially, have always been understanding and supportive. Nahid explains that her children seemed to sense from a young age that their mother needed their support when she had a migraine attack. Sometimes, they would see her resting during an attack and would ask her if they could help at all. Even through her pain, she was proud of their thoughtfulness. Her husband is very understanding of her needs and has learned over the years how best to support her. When she is suffering from a migraine attack, he makes sure to give her space and time to rest; when she is feeling well, they enjoy quality time together. “Over the years, I guess we just became accustomed to the role of migraine in our lives,” Nahid adds.
For Nahid, sharing her migraine art has empowered her to become an advocate for herself and other migraine patients. She has come to realize that being open about her disease has the potential to bring awareness to a stigmatized and underfunded disease and help others who are going through the same thing. This has made her passionate about sharing her story.
Nahid hopes that her story will reach people who have never experienced migraine themselves, and that it will give them an appreciation for the scope and impact of both episodic and chronic migraine.
“There is so much work to do when it comes to policies around migraine in the workplace, or students with migraine…even if you only get migraine attacks episodically, they are still so unpredictable, and people need accommodations and support.”
Nahid also feels passionately that people living with migraine should not have to fake it and pretend to be well. “People with migraine should be able to talk about it without feeling ashamed or thinking we need to hide our suffering because it isn’t taken seriously, or because people judge us for being so affected by it. What we are feeling is real and very difficult. And medications that can help should be available to anyone who needs them.”
You can see Nahid’s migraine art here: @migraineart_bynahid
