Is It a Migraine? Many Patients Don’t Realize What Causes Their Suffering

The first of a new class of drugs to prevent migraines was approved last week. The medication, called Aimovig, reduces the frequency of migraines among those severely afflicted, but the drug rarely prevents these episodes altogether. One expert called it “progress but not a panacea.”

Migraine is the most disabling neurological disease in the world among people under age 50, beating epilepsy, strokes and chronic back pain. Yet many who have migraines don’t realize it or ever mention their symptoms to a doctor.

Migraines are not just headaches. It is diagnosed in patients only if they have had a minimum of five attacks, each lasting four to 72 hours. Each attack has to include at least two of the following symptoms: throbbing headache with pain that is moderate to severe, that worsens with activity, and is only on only one side of the head. Also, a person suffering a migraine attack is nauseated or abhors sound or noise.

Sometimes, but not always. About 20 percent of migraine patients get an aura before the headache. Auras involve distortions of vision. People see jagged lights or have blind spots in their visual field. But auras can take other forms as well: a prickling pins-and-needles feeling on parts of the body, speech disturbances, distortions of sounds. Some get auras without a headache or only a mild headache. Auras actually involve different areas of the brain than migraines, and it is not clear why they are linked to migraine headaches.

They can start in childhood, although they usually begin in adolescence or young adulthood. They strike nearly one in five women worldwide, one in 16 men and one in 11 children. One out of four households has at least one member with migraine. The condition seems to spring from a combination of genetic and environmental factors. There is nothing a person can do to reduce the odds of developing migraine.

Possibly, but no one knows for sure. Estrogen — the hormone that is abundant in women before menopause and present in much lower amounts in men — is one factor in migraines, although not the only one. Migraine attacks seem to be more frequent and severe when estrogen levels change during puberty, menses, the first trimester of pregnancy and the years before menopause.

They often think the headaches are caused by tension, stress or dehydration, or that they are “sinus headaches” — a category that doesn’t exist. “Sinus headaches are an invention of Madison Avenue,” said Dr. Stewart Tepper, professor of neurology at Dartmouth College. “If you go to Europe, they don’t know what you are talking about.”

The runny nose and tearing eyes that accompany a headache can be migraine symptoms, he said. In one study, 88 percent of patients with self-reported sinus headaches or a physician diagnosis of sinus headache actually were having migraines. Misdiagnoses abound. In another study, primary care providers who diagnosed a patient’s headaches as something other than migraine were usually wrong.

Even patients with chronic migraines, defined as at least 15 headache days a month, are often not correctly diagnosed. One large study found that only 4.5 percent of people with chronic migraine had spoken to their doctors about their symptoms, gotten an accurate diagnosis and received appropriate care.

Over-the-counter pain relievers like aspirin and ibuprofen usually don’t work. Sinus drugs also tend to be useless. And no treatment always prevents migraines. Patients usually find a drug, combination of drugs or device that helps shorten the severity and duration of migraines.

The options include a class of drugs, triptans, that help about 60 percent of patients. They are generic and come with prices ranging from about $11 for nine pills to $70 for two injections to $428 for a supply of six nasal sprays. Devices include Cefaly, which attaches like a rhinoceros horn to the forehead and transmits electric pulses to a nerve beneath the skin. It costs $550. GammaCore is a nerve stimulator that costs $575. It’s held at the neck and transmits electric signals to a nerve there.

Another device that helps some patients is Spring TMS. It is held at the back of the head. Patients press a button and it sends a quick magnetic pulse into the brain. It rents for $150 a month for first three months, $220 a month afterward.

Botox also can reduce the frequency of migraines, but it is even more expensive and approved only for chronic migraines, defined as at least 15 days of headache per month at least 4 hours per day. The drug costs about $6,000 a year. Although private doctors can administer it, most don’t for administrative reasons, Tepper said. So most patients have to go to medical centers for injections every 12 weeks. With the costs of storage and fees for hospital, nurse, doctor and room, it can cost $15,000 or more per year, he said.

Other generic drugs that can reduce migraine frequency include antidepressants, epilepsy drugs, and a type of heart drug — beta blockers — that slow the heart rate and reduce blood pressure. Side effects can be significant. With topiramate, or Topamax, an epilepsy drug, they can include cognitive and mood changes, weight loss, allergic glaucoma, loss of sweating, kidney stones, and tingling of hands and feet.

The newly approved drug, Aimovig, by Amgen and Novartis, is the first drug specifically designed to prevent migraines. It is injected once a month with a device similar to one used to inject insulin. Its list price is $6,900 a year.

The pain can be terrible. Dr. Amaal Starling, a migraine specialist at the Mayo Clinic in Phoenix, comes from a family of women who get migraines — and she gets them herself. Hers began with an aura that manifested as blind spots that lasted 10 to 15 minutes. Then a pounding headache began. “Lights were so bright I couldn’t keep my eyes open,” she said. “Even quiet voices sounded like loud echoing voices and made my headache worse.”

When she was in college, she began having migraines every other day and sought help at the health center. A doctor told her the headaches were caused by stress. He advised her to take less difficult courses and drink more water.

In medical school, she took a pharmacology course and learned about triptans.

“I went to a doctor and said, ‘I think I have migraine, I want to try triptans.’ And I told my family members to try triptans. Now we all take them.”

Lisa Johnson, 57, a commercial real estate manager in Quincy, Massachusetts, said her throbbing headaches began when she was a teenager. Each headache lasted four or five days. She’d get a reprieve for a day or so, then the next headache would start. Even a normal speaking voice worsened the pain; so did bright light.

She tried over-the-counter pain and sinus medicines, as well as acupuncture, to no avail. In her mid-30s, a headache specialist diagnosed her with migraines. But the available treatments didn’t help.

About four years ago, she entered an Amgen’s clinical trial for its recently approved drug. She had a very unusual response: her migraines stopped completely.

“I don’t even remember the pain I was in,” she said. “When you don’t have it, you can live your life.”