At age 8, I was diagnosed with a combination of migraine, cluster and tension-type headaches. Many migraineurs have suicidal thoughts, and I once read that clusters can be more painful than an accidental amputation. Over the past 24 years, my migraines have become intractable—pain 24/7. New research suggests that constant headaches may cause the brain to lose its natural ability to fight pain. I fight anyway. This chronic condition isn't always visible to others. Sufferers are trapped in a different dimension, one between life and death, where invisible assailants take up permanent residency. The curse and the blessing of this existence are the same: It won't kill you.
Currently there's no cure for a migraine, but there's a loophole in the devil's plan: This brain disorder can be managed. And that's what I cling to in my search for healing. Read more about Susanne's remarkable story of everyday survival.
Chronic pain demands a proactive mind-set. You need to help yourself at a time when all you want is for someone to save you. In attempting to prevent a more severe attack, I take a handful of medicine three times a day. I try to separate the idea of pain from that of suffering: I can't control the presence of pain, but I can control how I react to it. I move my thoughts away from what hurts and focus on breathing, relaxation tapes, and the feel of wet sand between my toes. I practice biofeedback to mentally relax my muscles. And when neither these methods nor painkillers mitigate the pounding—when defeat tries to crawl under my skin, hissing, 'Nothing will help, you're running out of options.'—I tell myself that I'm narrowing my to-do list, getting closer to a solution.
Other ways I attempt to take control are by avoiding triggers and by following consistent sleep, eating, and exercise routines. To drown out sounds that exacerbate headaches—cars, voices, noise—I wear earplugs. I go to sleep and wake up at the same time every day, no naps. I adhere to a migraineur's diet—abstaining from alcohol, caffeine, chocolate, nitrites and aged or pickled foods, among many other things—and try to avoid smoky, loud or bright places. I've minimized my schedule and said goodbye—for now—to my athletic days. Walking, tai chi and yoga have replaced running, soccer and tennis. Twice a day I meditate, my mantra being "There is no pain"—believing that by repeating it, it will become true, that my mind will listen to my heart.
It's been 24 years of fighting for resurrection, more than two years since I've experienced a pain-free moment. I mourn for the person I could be, but this is my existence. I accept it yet refuse to be defined by it, so I'll continue searching for my lesson and for my freedom. I don't know where the chronic pain will lead me or where I'll take it. What I do know is that life is a challenge—sometimes a disappointment, sometimes a standing ovation—but always a gift.
Description: Steady ache, usually affecting both sides of the head. Lasts anywhere from 30 minutes to several days.
Percentage of Adults Affected: Up to 90 percent
Description: Throbbing or pounding pain that can target one or both sides of the head or the area behind the eyes. Associated with nausea, vomiting and sensitivity to light and sound. May be preceded by visual disturbances known as auras. Lasts anywhere from four to 72 hours.
Percentage of Adults Affected: About 12 percent (18 percent women; 6 percent men)
Description: Severe but brief pain (lasting one to two hours) that typically focuses around one eye. Attacks occur in groups (clusters) for weeks or months.
Percentage of Adults Affected: Less than 1 percent (about 85 percent men)
Description: Daily or near daily headaches for more than 15 days a month. Two of the most common types are tension-type and migraine.
Percentage of Adults Affected: About 4 percent
More than 50 drugs are used to treat migraines. Many of them are approved for other disorders, such as hypertension, epilepsy and depression. According to Fred Sheftell, M.D.—cofounder of the New England Center for Headache and coauthor of Conquering Headache——triptans are the most effective medications once an attack occurs. They include Imitrex, Zomig, Amerge, Frova, Maxalt and Relpax. To help reduce the frequency and intensity of attacks before they start, preventive drugs—such as Topamax, Depakote, Inderal and Elavil—can be taken daily.
Alexander Mauskop, M.D., director of the New York Headache Center and coauthor of What Your Doctor May Not Tell You About Migraines, recommends biofeedback, acupuncture and vitamin supplements—daily dosages of 400 milligrams of magnesium and 400 milligrams of riboflavin (B2), or 150 milligrams of Coenzyme Q10 (CoQ10). Herbs that may help migraines include feverfew and ginger. Preliminary studies suggest that some herbs or supplements might lower the efficacy of migraine medications or cause them to reach toxic levels, so consult your doctor before taking any.
According to Joel Saper, M.D., founder and director of the Michigan Head-Pain & Neurological Institute, a migraineur's brain is more sensitive to triggers than the average person's. So the goal is to stop pain messages from reaching the brain and causing headaches. When standard treatments alone don't work, the following techniques might be considered for chronic sufferers.
Botox: This toxin, derived from the bacteria that cause botulism, is known for its ability to erase wrinkles. Studies are under way to assess its ability to prevent migraines. It was initially thought that Botox relieved headaches by relaxing tense muscles in and around the head and neck. New studies, however, suggest that it might inhibit nerves from sending pain signals to the brain.
Trigger-point injections: Numbing medications are injected into muscle and nerve sites for short-term relief.
Facet joint and occipital nerve blocks: Areas around the head and neck are injected with Novocain-like drugs or steroids to reduce inflammation. If this relieves pain, nerves may be frozen or burned for a more long-term solution.
Neurostimulation: This experimental technique involves surgically implanting an electrode beneath the skin, which sends impulses to the nervous system and peripheral nerves to block pain signals.
For more information, go to achenet.org and www.headaches.org.