Tips on Living With Migraine
Three people share their experiences with chronic disease and what they’ve learned about finding truly helpful treatments.
The year of the headache
Anikah Salim had a headache in September 2014. That’s okay. She had headaches since she was a child. Usually over-the-counter drugs were enough to drive them away.
But this one was different. The drugs didn’t seem to hurt him. Plus, it just wouldn’t 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 basically like a hammer, just someone who hammers a hammer regularly every day,” says Salim, who is in his thirties. “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. His face swelled up. On very bad days, his vision dimmed 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, ”recalls Salim thinking. “It was terrifying. I have never felt this kind of pain, neither before nor since.
Seven months later, in the spring of 2015, a neurologist diagnosed Salim with a 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 help is collaboration.
For example, when Salim noticed that regular migraines at the start of her menstrual cycle were more difficult to treat, her doctors noticed. Working with Salim’s gynecologist, they focused on a plan to adjust her estrogen levels before her period. The migraines before Salim’s period would hit her 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 been dealing with 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 were more frequent at the start of the week than on other days.
Doctors and friends have suggested that it could be the stress of 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 enjoyed as well.
He kept a neat journal of his activities and eventually found the common bond: coffee. Specifically, too little caffeine.
Coe tended to cut back on his coffee consumption on weekends and when he was on the go. Too much of it upset his stomach.
Additionally, “the neurologist I work with, as well as my primary care physician, told me that I should probably cut back or eliminate caffeine from my diet because it causes seizures,” says Coe, director of the education and digital strategy at Global Healthy Living Foundation, a New York-based advocacy organization 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 don’t maintain the same amount of caffeine daily, I will have migraine attacks,” says Coe.
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 migraine sufferers is to try whatever works and keep an open mind. Everyone reacts differently to different remedies. Coe tried, among other approaches, light filtering glasses, massage, heat, ice, rest, and noise and light prevention.
“I once put my head in the freezer to try to relieve myself.”
The most important thing, says Coe, is to be careful. It even goes beyond the first few months after a diagnosis. Your migraine may progress, your daily routines may change, and it’s always possible to notice something new in 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 migraine experience or expertise, says Coe, you can always offer a sympathetic 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 work with a neurologist from a young age and with pediatric and adult neurologists,” says Arant, 38, a nurse in Phoenix.
Arant’s symptoms included pain in the head and stomach (abdominal migraine) as well as nausea and vomiting. At first, she did quite well with the medication.
But by the time Arant hit his early teenage years, his headache days spiked to 15 or more days per month (chronic migraine) and his medication, sumatriptan (Imitrex), no longer seemed strong enough. . Arant and his doctors didn’t know how to stop the torrent of migraine attacks.
Finally, they tried something unusual. Salim increased his injectable doses of sumatriptan to two doses per day for a week. The usual treatment protocol is no more than 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 you a certain dose, there’s a reason,” says Arant.
Do not cut the tablets in half, she adds, just because you are not sure about your symptoms. Use the full prescribed dose as soon as possible in 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 medication. For some triptan drugs, this cannot be more than 2 days per week.
More recently, Arant asked her doctor about a promising 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, Arant says, the drug has been successful.
For more information read Latest research on migraine treatments
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