The thing is, help is out there, but many people -- and their doctors -- may not know it.
Frequent migraines have a debilitating effect on Tammy Coleman, 30, of Mt. Lebanon. She doesn't have time for them: Her husband, Mark, is part of an Army Reserve unit that went to Iraq in 2003 for eight months, and Mark and Tammy have four children and three dogs. Ms. Coleman also manages a doctor's office.
Her headaches began when she was about 10 and, like many young migraine sufferers, she missed a lot of school.
"I have different migraines, regular and severe," she said. "I was having them every day; I had a throbbing at the top of my head every morning. But you know you have to face the day, get moving." When the headaches are severe, she has sweaty palms and blurred vision, sometimes passes out, and has convulsions.
When she was younger, living in Florida, she said she would be told to take Motrin, but the pain would continue. Now that she's a patient of Dr. Nathan Bennett in Pleasant Hills, she keeps track of her headaches and the effectiveness of new medications. By looking at her headache diary, a notebook with a cheery pink daisy on its cover, she can now gauge her progress and take an active part in her own health care.
Dr. Bennett, 42, a family practitioner, said he has been interested in headaches since his residency and in the past five years has devoted more of his practice to treating headache sufferers. Lectures and classes led by Dr. Robert G. Kaniecki, a UPMC-Presbyterian neurologist, have guided him.
Dr. Kaniecki, 45, assistant professor of neurology at the University of Pittsburgh and founder and director of The Headache Center at UPMC, said in addition to taking care of patients, his mission is to teach primary-care physicians about headaches.
"Our efforts over the past decade have concentrated on better tools and information, and getting them to clinicians so they can diagnose more effectively and efficiently," Dr. Kaniecki said.
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"I've learned a lot from him," Dr. Bennett said, adding that he also wants to encourage proper diagnoses for the millions of migraine sufferers who aren't getting treatment. He said studies have found that about a third of patients in primary-care physicians' offices have migraines. In response, he recently opened a Headache Wellness Center in his Pleasant Hills office to work with referrals from other primary-care doctors.
Dr. Kaniecki said mistakes in diagnoses can be attributed to "a general lack of headache education in medical training programs," adding that more time is spent discussing asthma and diabetes, even though migraine sufferers are equal in number to asthma and diabetes patients, combined.
"The fact is, it's predominantly, 3 to 1, a female illness. And eight or nine out of 10 people who look for care are women," Dr. Kaniecki said.
"We're catching up with the ladies, obviously improving breast cancer care over the years, but not [making progress against] cervical or ovarian cancer compared to prostate," he said, adding that more progress against migraines might be made "if men were affected, doing research in medical schools, doing education in medical schools."
The second reason for a lack of progress, the doctor said, is that "Migraine doesn't kill you ... but it makes you wish you were dead."
The disabling nature of migraines, Dr. Kaniecki said, is what should demand more respect: "Having a severe migraine completely disables you. The level of disability is as high as quadriplegia."
Historically, migraines were considered a psychiatric condition. Dr. Bennett said there are still some doctors who think migraines have a psychological cause, although there is much scientific evidence of their physical nature. In medical school, he said, "It gets skipped over."
In addition, migraine and tension headaches were often confused. Added to that, a popular diagnosis started in the 1950s was that a migraine in the front of the face was considered a sinus headache.
Dr. Kaniecki said a study of sinus headaches found nine out of 10 of them actually are migraines. Antibiotics will not help a migraine. In tension headache research, similar misdiagnoses were found: Nine out of 10 sufferers actually had migraine.
Get a diagnosis
Nevertheless, it's difficult to diagnose a migraine.
What are the signs that you get migraines? Dr. Kaniecki said you get a headache daily and you're taking too many sinus or tension headache pills. If you're waking up with a throbbing headache, and throwing up, head for the doctor.
Dr. Kaniecki said the doctor must rule out other causes, such as brain tumor or aneurysm. If it is a migraine, the pain is treated with medication. At the same time, he said, the patient must also be profiled.
Dr. Kaniecki began educating primary-care physicians in headache care in 1992 at Allegheny General Hospital, where he founded and directed the Allegheny General Headache Center in 1996. Although that center no longer exists, the Department of Neurology at AGH has two primary neurologists who care for migraine patients: Dr. Lara Kunschner and Dr. Sandeep Rana. Dr. Kaniecki moved to UPMC in 2000, establishing its center that year.
Now his staff of neurologists and physician's assistants see about 1,000 patients a month. The center is moving to a more spacious location this year. Dr. Kaniecki said it's the only full-service headache center between Cleveland and Philadelphia.
Go for treatment
When migraine pain starts, there are medications available, including over-the-counter products for mild to moderate pain. Some medications designed for other conditions (seizures, depression and hypertension) have been successful in treating migraines. Most recently, triptan medications, which moderate chemical reactions in the brain, were designed specifically for migraines and help restore the balance of a neurotransmitter called serotonin.
The goal in prevention, Dr. Kaniecki said, is to cut the number of headache days in half. Medication should make the patient pain-free with one dose in two hours.
Dr. Kaniecki said triptans are 85 percent to 90 percent successful in eliminating the pain.
Keep a diary
Dr. Kaniecki said patients who keep headache diaries can document what triggers their headaches -- food, light, noise, menstrual cycles, travel, among other things, -- their severity and the effectiveness of treatment.
He said the diaries are only as good as the past month, however, so they have to be kept up. Migraines can vary from week to week and month to month.
"Keep it simple," the doctor advised.
"It really takes 30 seconds to look at the diary,'' Dr. Bennett said. "It's a perceived time ... Most physicians can't go a minute and a half before interrupting the patient."
Soon to be married, Darcy Stewart, 37, of Allenport, keeps a diary of her headaches and includes a record of things that trigger them, their severity and the medications she takes.
Among her triggers are flickering electric lights. The active migraine sufferer's brain can't filter out the confusing signal, Dr. Bennett said.
Keep healthy habits
Managing a migraine also means taking care of yourself, Dr. Kaniecki said: Getting exercise, watching caffeine intake, drinking enough water, maintaining good sleep habits, and treating other health issues.
Dr. Bennett and Dr. Kaniecki both get migraines, so they know firsthand the challenge.
People can try out what he calls "the naturals," Dr. Kaniecki said, which means a healthy lifestyle of sleep, regular meals, 30 minutes of exercise a day and good hydration. It means restricting stimulants such as caffeine and nicotine, and artificial sweeteners, and taking nutritional supplements, such as magnesium and vitamin B2.
What lies ahead
There's still a long way to go, Dr. Kaniecki said.
"Even the best drugs reduce headaches by 50 percent for 50 percent of patients. We need better acute therapies, like triptans. More importantly, we need to do a better job of prevention."
Dr. Kaniecki is optimistic about the future of migraine treatment, for doctors and patients: "I love to do it. I've seen the light bulb go on when people get it. ... We are starting to make a difference."