Tips for living with migraine
Three people share their experiences with chronic disease and what they’ve learned about finding treatments that really help them.
The year of the headache
Anikah Salim had a headache in September 2014. No big deal. She suffered from headaches since childhood. Usually, over-the-counter drugs were enough to drive them away.
But this one was different. The drugs did not seem to damage her. Plus, it just didn’t want to go away.
After enduring 3 days of excruciating pain, Salim went to the emergency room. It would take almost a year for his headache to go away.
“It was like a hammer, just someone who hammered a hammer every day,” says Salim, who is in his 30s. “When people came, they had to whisper. No lights were on. No TV was on. I mean, I never had to do this with a headache.
Salim had other symptoms. She was sensitive to sound and light. Her face swelled up. On really bad days, his vision blurred and dimmed. Sometimes she lost the feel and full use of her left arm.
Salim, who works as an epidemiologist for the federal government and lives near Baltimore, knew something was seriously wrong. She feared she might have a brain tumor, slow bleeding, or neurological disease.
“It’s not a migraine. Something’s wrong with my brain, ”Salim remembers thinking. “It was terrifying. I have never known this kind of pain, before or since.
Seven months later, in the spring of 2015, a neurologist diagnosed Salim with chronic migraine with aura. The aura causes strange light effects generated by the brain. After taking a full medical history, the doctor told her that she likely had migraines for most of her life, including her childhood. She just didn’t know it.
But her last symptoms were “intractable,” which meant doctors couldn’t identify the triggers and couldn’t find an effective treatment.
After trying a number of different drugs alone and in combination, Salim finally started to get relief in August 2015.
Over the past 5 years, she and her doctors have continued to refine her treatment. Salim has learned that one of the most important keys to finding effective relief is collaboration.
For example, when Salim noticed that regular migraines early in her menstrual cycle were more difficult to treat, her doctors noticed. Together with Salim’s gynecologist, they focused on a plan to adjust his estrogen levels before his period. Salim’s pre-menstrual migraines knocked her out for a week or more. Now she usually recovers in 24 to 48 hours, although she still uses other treatments.
All doctors, even headache specialists, may not be willing or knowledgeable enough to try hormone therapy for migraines. This kind of teamwork, says Salim, is one of the keys to effective migraine management.
Joseph Coe thought he had a pretty good idea of his condition. With the help of his doctors, Coe had managed migraine attacks and treatments since the age of 14.
And yet, after all these years, he began to notice a new pattern: migraine Mondays.
Coe, 35, couldn’t understand why his migraines flared up more often at the start of the week than on other days.
Doctors and friends have suggested it could be due to stress at work. But Coe loved his job and looked forward to Mondays. Also, stress theory couldn’t explain why her migraine rates tended to decrease as the work week progressed.
In fact, the only other time he noticed a spike was when he was traveling, which Coe appreciated as well.
He kept a careful journal of his activities and finally understood the common thread: coffee. Specifically, too little caffeine.
Coe tended to cut back on his coffee consumption on weekends and when he was on the road. Too many things bothered her stomach.
Additionally, “the neurologist I work with, as well as my family doctor, told me that I should probably cut back or eliminate caffeine from my diet because it causes seizures,” says Coe, director of education and of the digital strategy at Global Healthy. Living Foundation, an advocacy organization in New York City for people with chronic illnesses.
But her migraine diary showed a clear pattern: A day or two after cutting back on his coffee, Coe had a migraine.
“I realized that if I didn’t maintain the same amount of caffeine daily, I would have migraine attacks,” Coe says.
Caffeine, like so many other aspects of migraine care, is complicated. Sometimes this can be a migraine trigger. But caffeine can also be a treatment (it’s a key ingredient in some over-the-counter migraine medications).
Coe’s advice to other migraine sufferers is to try what works and keep an open mind. Everyone reacts differently to different remedies. Coe tried light filtering glasses, massage, heat, ice, rest, and noise and light avoidance, among other approaches.
“I actually once put my head in the freezer trying to get relief.”
The most important thing, says Coe, is to be careful. It even goes beyond the first few months after a diagnosis. Your migraine may change, your daily routines may change, and it is always possible to notice something new about your symptoms.
As for those who don’t really know what migraines are, Coe asks for more understanding and support.
“I think a lot of migraine patients feel like they’re being told their migraine is something else,” he says. “That they are too stressed. Or, you know, maybe you should try yoga or do this or that.
If you don’t have any experience or expertise with migraine, says Coe, you can still offer a listening ear.
Test a new therapy
Elizabeth Arant’s migraines started when she was 6 years old. Despite his age and unlike so many people with the disease, Arant was diagnosed almost immediately.
“I was fortunate to deal with a neurologist from a young age and pediatric and adult neurologists,” says Arant, 38, a nurse in Phoenix.
Arant’s symptoms included head and stomach pain (abdominal migraine) as well as nausea and vomiting. At first, she was doing quite well with the medication.
But by the time Arant reached his teens, his headache days increased to 15 or more per month (chronic migraine) and his medication, sumatriptan (Imitrex), no longer seemed strong enough. Arant and his doctors couldn’t figure out how to stop the torrent of migraine attacks.
Finally, they tried something unusual. Arant increased her injectable doses of sumatriptan to two doses per day for a week. The usual treatment protocol does not exceed three times a week.
With the advice of his neurologist, Arant followed the two-dose-a-day plan for a few migraine cycles. It worked. Once she broke her cycle of constant migraines, Arant returned to the lower limits of her medication.
Success taught Arant that his doctors were a valuable resource. Ask them lots of questions. Use their expertise to your advantage. And always follow their instructions.
“If your doctor prescribes a certain dose for you, there’s a reason,” says Arant.
Don’t cut the pills in half, she adds, just because you’re not sure about your symptoms. Use the full prescribed dose as soon as possible at the start of the attack, unless your doctor tells you otherwise. At the same time, be careful not to exceed the maximum number of doses per week.
“Even as a child, I understood that there was always great concern about rebound headaches,” which would limit the number of days you can use any medication. For some triptans, this may not exceed 2 days per week.
More recently, Arant asked her doctor about a promising emerging treatment she had read. An anesthetic medicine called ketamine is given by an IV nasal spray to control migraine attacks. Ketamine is a powerful drug that can cause serious side effects, and researchers are still learning about its effectiveness.
But for someone like Arant, who still hasn’t found a fully effective treatment, ketamine seemed like an opportunity. Her doctor helped her weigh the pros and cons. They closely monitor its symptoms and manage side effects.
So far, says Arant, the drug has been successful.
For more information read Latest research on migraine treatments