Three people share their experiences with the chronic condition and what they’ve learned about finding treatments that really help.
Anikah Salim got a headache in September 2014. No big deal. She had dealt with headaches since she was a kid. Usually, over-the-counter medication was enough to chase them away.
But this one was different. The drugs didn’t seem to dent it. Plus, it just wouldn’t go away.
After enduring 3 days of excruciating pain, Salim took herself to the emergency room. It would be almost a year before her headache disappeared.
“It was like basically a hammer, just someone pounding a hammer consistently every day,” says Salim, who is in her 30s. “When people came around, they had to whisper. No lights were on. No TV was on. I mean, I’ve never had to do this with a headache.”
Salim had other symptoms. She was sensitive to sound and light. Her face swelled. On really bad days, her vision would blur and fade. At times, she lost feeling 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 or slow hemorrhage or neurological disease.
“This is not a migraine. Something’s wrong with my brain,” Salim remembers thinking. “It was terrifying. I’ve never experienced that 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 had likely been having migraines for most of her life, including her childhood. She just didn’t know it.
But her latest symptoms were “intractable,” which meant doctors couldn’t pinpoint triggers and couldn’t figure out an effective treatment.
After trying a number of different medications alone and in combination, Salim finally started to get some relief in August 2015.
Over the last 5 years, she and her doctors have continued to fine-tune her treatment. Salim has learned that one of the most important keys to finding effective relief is collaboration.
For example, when Salim noticed that the regular migraines at the start of her menstrual cycle were harder to treat, her doctors took notice. Together with Salim’s gynecologist, they zeroed in on a plan to adjust her estrogen levels before her period. Salim’s pre-period migraines used to knock her out for a week or longer. Now she usually recovers in 24-48 hours, though she still uses other treatments.
Not all doctors, even headache specialists, may be willing or knowledgeable enough to try a hormone therapy for migraines. That kind of teamwork, Salim says, is one of the keys to effective migraine management.
Joseph Coe thought he had a pretty good handle on his condition. With the help of his doctors, Coe had managed migraine attacks and treatments since he was 14.
And yet, after all those years, he started noticing a new pattern: migraine Mondays.
Coe, 35, couldn’t figure out why his migraines were flaring more often at the start of the week compared to other days.
Doctors and friends suggested it might be stress from work. But Coe loved his job and looked forward to Mondays. Plus, the stress theory couldn’t explain why his migraine rates tended to subside as the work week progressed.
In fact, the only other time he noticed a spike was when he travelled, which Coe also enjoyed.
He kept a careful diary of his activities and finally figured out the common link: coffee. More precisely, too little caffeine.
Coe tended to cut back on coffee on the weekends and when he was on the road. Too much of it upset his stomach.
Plus, “the neurologist that I work with, as well as my primary care physician, told me that I probably should reduce or eliminate caffeine from my diet because it brings on attacks,” says Coe, director of education and digital strategy at Global Healthy Living Foundation, an advocacy organization in New York for people with chronic health conditions.
But his migraine diary showed a clear pattern: Within a day or two of cutting back on coffee, Coe got a migraine.
“I realized that if I don’t maintain the same amount of caffeine on a daily basis, I will get migraine attacks,” Coe says.
Caffeine, like so many other aspects of migraine care, is complicated. Sometimes it can be a migraine trigger. But caffeine also can be a treatment (it’s a key ingredient in some over-the-counter migraine medication).
Coe’s advice to others with migraine is to try whatever works and to keep an open mind. Everyone responds differently to different remedies. Coe has tried light-filtering glasses, massage, heat, ice, rest, and avoidance of noise and light, among other approaches.
“I actually once put my head in the freezer trying to get relief.”
The most important thing, Coe says, is to pay attention. That goes for even beyond the first few months after a diagnosis. Your migraine might evolve, your daily routines might change, and there’s always a possibility to notice something new about your symptoms.
As for those who don’t truly know what migraines are, Coe asks for more understanding and support.
“I think that a lot of migraine patients feel like they are told that their migraine is something else,” he says. “That they’re too stressed. Or, you know, maybe you should try yoga or do this or that.”
If you don’t have experience or expertise with migraine, Coe says, you can still offer a sympathetic ear.
Elizabeth Arant’s migraines started when she was 6 years old. Despite her age, and unlike so many people with the condition, Arant got a diagnosis almost immediately.
“I was very fortunate to get in with a neurologist from a very young age and by both pediatric and adult neurologists,” says Arant, 38, a nurse in Phoenix.
Arant’s symptoms included pain in her head and belly (abdominal migraine) as well as nausea and vomiting. At first, she managed pretty well with medications.
But when Arant hit her early teen years, her number of headache days shot up to 15 or more a month (chronic migraine) and her medication, sumatriptan (Imitrex), no longer seemed strong enough. Arant and her doctors couldn’t figure out how to stop the torrent of migraine attacks.
Finally, they tried something unusual. Arant upped her injectable doses of sumatriptan to two doses every day for a week. The usual treatment protocol is no more than three times a week.
With her neurologist’s guidance, Arant followed the two-dosage-per-day plan during a couple of migraine cycles. It worked. Once she broke her cycle of constant migraines, Arant went back to the lower limits on her medication.
The success taught Arant that her doctors were a valuable resource. Ask them lots of questions. Lean on their expertise to your benefit. And always follow their directions.
“If your doctor prescribes a certain dose, there’s a reason,” Arant says.
Don’t cut pills in half, she adds, just because you’re unsure about your symptoms. Use the full prescribed dose as early in the attack as possible unless your doctor tells you otherwise. At the same time, take care not to exceed the maximum number of doses per week.
“Even as a child, I understood there was always that great concern about rebound headaches,” which would limit the number of days you can use a medication. For certain triptan drugs, this may be no more than 2 days a week.
More recently, Arant asked her doctor about a promising emerging treatment she’d read about. An anesthetic drug called ketamine is delivered by an IV nasal spray to control migraine attacks. Ketamine is a powerful drug that may cause serious side effects, and researchers are still learning about how well it works.
But for someone like Arant, who still hasn’t found a wholly effective treatment, ketamine seemed like a chance worth taking. Her doctor helped her weigh the pros and cons. They’re closely monitoring her symptoms and managing the side effects.
So far, Arant says, the medication has been a success.
For more information, read Latest Research on Migraine Treatments