Living with Chronic Migraine

Not “Just a Headache”

Don’t ever dismiss migraine as “just a headache.” That is the worst fear of chronic migraine sufferers like Kerry Howard-Lenet, 34, a dental hygienist and mother of three living in Montreal, Canada. “It is separate from a headache and completely debilitating,” she says. “I wish people understood the pain. It feels like a knife is inside my brain and trying to break through from inside my eye. It’s not as though I don’t want to get out of bed. I really can’t. If I do, I will pass out or throw up. I don’t think people understand the amount of pain you can be in.” Migraine expert Noah Rosen, MD, Director of the Headache Center at the Cushing Neuroscience Institute of the North Shore-LIJ Medical Group in Great Neck, NY, agrees. Migraines are produced by some pretty complex changes in the brain that are still not fully understood, he says. Experts speculate that migraines occur when abnormal electrical signals in the brain stimulate an “inflammatory cascade” that sensitizes one of the key nerves in the head, known as the trigeminal nerve. That can create an intense pain signal that spreads throughout the brain. As this stimulation continues, the trigeminal nerve may start firing abnormally on its own. The pain, says Dr. Rosen, can often rival that of dental surgery, passing kidney stones, or even childbirth (Kerry was distracted by the fear of her own migraines returning following a brief respite during pregnancy while in labor with her children). Other common symptoms include nausea and vomiting, vision changes, as well as extreme sensitivity to light, noise, or smell. A Common but Invisible Problem Migraines are quite common, says Dr. Rosen, with up to 36 million Americans experiencing at least one in their lives. The problems really arise, however, among the subset of people who face chronic migraines. These unfortunate souls may suffer from migraines at least 15 days out of every month for extended periods of time. It can wreak havoc with work, school, family, and relationships. Kerry’s migraines are triggered by environmental factors like barometric pressure changes and allergens in the air, so it is not unusual for her to have migraines daily during the height of summer. Migraine is an “invisible” disease. It can’t be seen from the outside, so many underestimate its impact. Dr. Rosen says that fewer than 50% of migraine sufferers receive a correct diagnosis and even fewer receive appropriate treatment. When Kerry’s migraines started at age 12, her mother didn’t believe they were anything serious. On bad days, she was sent to school with over-the-counter painkillers, which were essentially useless. Kerry’s mom finally took her to a community-based neurologist when she was 13, who correctly diagnosed her as a migraine sufferer but failed to educate her or her mother properly about the condition. Her mother refused to fill any of the prescriptions she was given, saying, “Do you really want to take pills for the rest of your life?” By grade 10, Kerry’s migraines were being triggered during every single math class by a flickering fluorescent light. She ended up in the school nurse’s office so often that the nurse called her mother and insisted she see a doctor. The second neurologist Kerry saw gave her a handful of samples and prescriptions; at least six different drugs, Kerry estimates. But he didn’t take the time to explain how to use them properly. Migraine medication must be timed precisely to work. Not knowing how to use these powerful drugs, Kerry was unable to find relief and soon gave up. She did not receive the medical help she needed until she was in college, where the community GP at the student health center finally took the time to explain how various medications can be used to either prevent attacks or stop them in their tracks. Finally, she had the tools she needed to live a relatively normal life, but not before friends were lost and her relationship with her mother irretrievably damaged. Despite an understanding husband and the latest in migraine therapies, Kerry still suffers. The medication, while helpful, is not always 100% effective. Some days, her migraines are so severe and long-lasting that she has to choice but to go to the hospital emergency room for intravenous medication. She counts herself lucky that she has medical insurance. “I don’t know how anybody without private insurance could afford the medication, especially if you get migraines a lot,” she says. Tough Choices Kerry has had to give up exercise because it can trigger a migraine. She watches her diet carefully, as some processed foods seem to make them worse. She gets help when she needs it from her husband and his family, but she is reluctant to ask. She just can’t let go of the nagging fear that they think she “just has a headache”. She was moved from one team to another at work because of her many absences. She wishes she could spend more time with her children. “I’ll be lying in bed screaming and crying, and I can hear my husband telling the kids, ‘Mummy has a bad headache and will be okay, but she can’t stop yelling.’ It’s really hard when everyone is home and to be lying in bed and not be able to be a mom.” She has to undergo surgery for basal cell carcinoma on her eyelid and what preoccupies her is not that she has cancer on her face but the risk that focusing a bright light on her eye during the surgery to remove it may produce a migraine. What probably preoccupies Kerry most these days is the fact that migraines are a highly inheritable condition. Her 6-year-old woke up last month screaming from pain in her head, but it is unclear whether that was her first migraine or a response to a possible concussion she sustained at school. The fact that she may have passed this painful and debilitating condition on to her daughter is devastating. The good news is Kerry knows what to keep an eye out for and how to talk to her daughter’s physician so that she gets appropriate treatment sooner rather than later.