An Understanding of Migraine Disease & Tips for Migraine Management
Michael John Coleman and Terri Miller Burchfield of M.A.G.N.U.M.
“One pill makes you larger, and one pill makes you small and the ones that mother gives you, don’t do anything at all,” words the Cheshire-Cat could have uttered, but they came to us from Grace Slick in her iconoclastic lyrical interpretation of ‘Alice In Wonderland’. Over a hundred years ago a fine art photographer took us on a wonderful journey through the eyes of Alice. The photographer-turned-writer drew from his personal experience with the disease he so suffered from, that of Migraine. His name was Lewis Carroll, and one may argue that if it were not for his constant Migraine attacks, he may not have been inspired to give us these gifts of fantasy by writing Alice’s Adventures in Wonderland and Through the Looking-Glass and What Alice Found There.
After a century of society and the medical community blaming Migraines on their sufferers, advanced technology and the age of information gave us the knowledge to begin to understand this debilitating disease. However, dangerous and outdated myths surrounding the Migraine disease have not yet been dispelled on a widespread basis. Not only are such myths believed by many loved ones and co-workers of those with Migraines, but by those with Migraines themselves (Migraineurs). Furthermore, such myths continue to be unwittingly reported in the media. The Migraine disease is a serious health and disability problem that affects approximately 32 million Americans, most of whom are women, with up to 38 million Americans having Migraine genetic propensity. There is no known cure for the Migraine disease, only treatments for the symptoms. Furthermore, such treatments are not yet wholly effective and Migraineurs may show a diminished tolerance to a variety of medications, treatments, and pain management regiments.
Dr. Joel R. Saper, M.D., F.A.C.P., Director, Michigan Head-Pain & Neurological Institute, summarized for M.A.G.N.U.M. the problems associated with Migraine: “There is no condition of such magnitude that is as shrouded in myth, misinformation, and mistreatment as is this condition [Migraine], and there are few conditions which are as disabling during the acute attack.”
In addition to being disabling, Migraines can be life-threatening. To put this in perspective, more people died from Migrainous Stroke last year than were murdered with handguns. The World Health Organization in 2004 in a Blue Book report noting that Migraine & Headache disorders are a global public health calamity. Dr Peer Tfelt-Hansen, president of IHS, explained:
“They are common neurobiological and often life-long conditions occurring throughout the world that affect men, women and children. They have been shown to cause a huge burden of disability. WHO ranks Migraine as one of the top twenty causes of years of healthy life lost to disability. And Migraine is but one headache disorder Ð all headache disorders together cause at least double the disability of Migraine alone.”
Celebrities and historical figures with the Migraine disease include, among many, Vincent Van Gogh, Claude Monet, Julius Caesar, Napoleon, Ulysses S. Grant, Robert E. Lee, Virginia Wolfe, Lewis Carroll, Mary Todd Lincoln, Elvis Presley, Loretta Lynn, and beloved American President John F. Kennedy just to name a few.
It is important to arm yourself with the real facts and mechanics of this disease to improve your quality of life.
Set forth below are a few of the most common and devastating myths surrounding Migraine, and the corresponding facts that counter such myths. Once the facts are known, proper treatment can be sought by Migraineurs, both through medication and management of controllable Migraine triggers. You would be surprised how understanding your combination of trigger mechanisms will do more to reducing the number and frequency of attacks than a prophylactic drug regiment (taking multiple drugs several times a day, every day, as a preventative treatment).
MYTH: A MIGRAINE IS JUST A BAD HEADACHE.
REALITY: MIGRAINE IS A DISEASE, A HEADACHE IS ONLY A SYMPTOM. IN ADDITION, THE CAUSE OF MIGRAINE PAIN IS THE OPPOSITE OF THE CAUSE OF HEADACHE PAIN.
Migraine is disease, a headache is only a symptom. Migraine pain is caused by vasodilation in the cranial blood vessels (expansion of the blood vessels), while headache pain is caused by vasoconstriction (narrowing of the blood vessels). During a migraine, inflammation of the tissue surrounding the brain, i.e., neurogenic inflammation, exacerbates the pain. Therefore, medicine often prescribed to treat a headache, such as beta-blockers, dilate the blood vessels and therefore can make a Migraine worse.
Unlike a headache, the Migraine disease has many symptoms, including nausea, vomiting, auras (light spots), sensitivity to light and sound, numbness, difficulty in speech, and severe semihemispherical head pain. One Migraine attack alone can last for eight hours, several days, or even weeks.
Migraine is a genetically-based disease. We first learned this in the mid-90’s, as it was specifically stated in correspondence with M.A.G.N.U.M. by Dr. Stephen J. Peroutka, M.D., Ph.D., President & CEO of Spectra Biomedical, Inc., a group of research physicians dedicated to understanding the genetic basis of Migraine and other illnesses, the “data are unequivocal: Migraine is a genetically-based illness. Individuals with a single parent having Migraine have approximately a 50% chance of having Migraine. This susceptibility is neither psychological nor induced by environmental causes.”
The the really exciting genetic discoveries where yet to come! And it came from down under by an Australian genetic research team at Grithiths University, north of Sydney. The Millennium year was a breakthrough year for Migraineurs as the Australian team, lead by Professor Lynn Griffiths, discovered not one, not two, but three genes for Migraine disease! MAGNUM had the opportunity to interview Dr. Lyn Griffiths, one of the world’s top experts on Migraines and genetics. Dr. Griffiths is the director of the Genomics Research Center at the Gold Coast campus of Griffith University, in Queensland, Australia. She told us that the research clearly shows that almost all Migraineurs have a close relative who is also a Migraineur. Migraineurs have a real ally in Dr. Griffiths as we where very impressed with her resolve for follow her research as far it goes, which just may lead us to a cure in the future.
A Migraine is induced by various controllable and uncontrollable triggers. Uncontrollable triggers include weather patterns and menstrual cycles, and controllable triggers include bright light, aspartame, and alcohol. The severity and frequency of Migraines for one person depends upon how many triggers an individual must experience before a Migraine is induced. The combination of triggers is different for each person.
MYTH: MIGRAINE IS CAUSED BY PSYCHOLOGICAL FACTORS, SUCH AS STRESS AND DEPRESSION.
REALITY: MIGRAINE IS A NEUROLOGICAL DISEASE, NOT A PSYCHOLOGICAL DISORDER.
Migraine is a true organic neurological disease. A Migraine is caused when a physiological (not psychological) trigger or triggers cause vasodilatation in the cranial blood vessels, which triggers nerve endings to release chemical substances called neurotransmitters, of which the neurotransmitter serotonin (5-HTT) is an important factor in the development of Migraine.
Dr. Saper stated in his endorsement letter to M.A.G.N.U.M. that “[Migraine] is not a psychological or psychiatric disease but one which results from biological and physiological alterations.” Similarly, Dr. Fred D. Sheftell, M.D., Director and Founder for the New England Center for Headache specifically stated in his letter of endorsement that “Migraine is absolutely a biologically-based disorder with the same validity as other medical disorders including hypertension, angina, asthma, epilepsy, etc. Unfortunately, there have been many myths perpetrated in regard to this disorder. The most destructive of which are ‘It is all in your head,’ ‘You have to learn to live with it,’ and ‘Stress is the major cause.'”
Misdiagnosis of Migraine as a psychological disorder can lead to a doctor prescribing unnecessary, counterproductive, and even dangerous medication. It is common for a Migraineur to be diagnosed, for example, with clinical depression and prescribed unnecessary drugs, leaving the Migraines unaffected. The continued presence of the Migraines may lead the doctor to believe that the Migraineur is unable to “handle” problems and is still “depressed”, leading to continued unnecessary drug treatment … and so on.
As mentioned above, the Migraine disease is induced by various trigger mechanisms. Trigger mechanisms can be broken down into two primary categories: uncontrollable and controllable. The Migraine triggers usually work in combinations.
Remember, Migraine is a disease that involves a heightening of one’s senses, all of one’s senses. A Migraineur is more sensitive to his or her surroundings, including light, sound, smells, taste (chemicals in foods), and touch (including the touch of the atmospheric pressure on one’s body). Awareness of one’s environment is critical for a Migraineur.
A good example of an uncontrollable Migraine trigger is weather patterns. Germany, for example, offers a telephone number that people such as weather-sensitive Migraine sufferers can call to find out the risk to their health of that day’s weather pattern. A recent study entitled “The Effects of Weather on the Frequency and Severity of Migraine Headaches” conducted in Canada arrived at the following conclusions: 1) “Phase 4” weather, characterized by a drop in barometric pressure, the passing of a warm front, high temperature and humidity and oftentimes rain, is closely associated with higher frequency and severity of Migraine attacks.; 2) a high humidex discomfort index during the summer is associated with an increased frequency of Migraine attacks; 3) wind from the southeast was shown to be associated with more attacks than wind from any other direction; and 4) a number of Migraine sufferers may be sensitive to extreme rates of barometric pressure changes.
Another common uncontrollable trigger is the menstrual cycle. As explained by Dr. Stephen D. Silberstein, M.D., F.A.C.P., Co-Director, The Comprehensive Headache Center at Germantown Hospital and Medical Center, Migraine usually develops around the time of the first menstrual period, called the menarche. The Migraine appears to be the result of falling levels or reduced availability of estrogen. Migraine sometimes becomes worse in the first trimester of pregnancy, but many women are Migraine-free later in their pregnancy. Menstrual Migraine is often more difficult to treat than other types of head pain. Women who have Migraines only with their period can often achieve relief by taking preventive (prophylactic) medication just before their period begins. If severe menstrual Migraine cannot be effectively controlled by any of these medications, hormonal therapy is a possibility.
Controllable triggers, on the other hand, include bright light, chemical smells, second-hand smoke, particular alcohols such as red wine and some hard alcohols such as scotch, foods that are known vasodilator such as fish, some chocolate, aged cheese, and foods which contain nitrates and/or the radical vasodilator MSG.
Therefore, if one avoids controllable triggers during Migraine-weather or menstrual cycles, one may be able to escape a Migraine attack. Another tip: take abortive medication prescribed for Migraine at the earliest sign of a Migraine attack. Oftentimes, if one waits to take the medication until the attack has matured, the medication may prove practically ineffective. The drugs commonly prescribed to Migraineurs fall into two groups: abortive and preventative (prophylactic). There are some common problems and adverse effects associated with a host of the medications. Some of the more pronounced are: from abortive drugs, dizziness from Stadol, tolerance to barbiturates, rebound headache from overuse of Ergotamine and over-the-counter non-narcotic analgesics (e.g., Tylenol, aspirin and NSAIDS); and from preventative drugs, beta-blockers and calcium channel-blockers can trigger headaches/Migraines. Get to know your pharmacist, he or she can be an important source of information.
MYTH: MIGRAINE IS NOT LIFE THREATENING, JUST ANNOYING.
REALITY: MIGRAINE CAN BE LIFE THREATENING, INDUCING SUCH CONDITIONS AS STROKE AND COMA.
Migraine can induce a host of serious physical conditions: strokes, aneurysms, permanent visual loss, severe dental problems, coma and even death.
According to the New England Journal of Medicine, “migraine can sometimes lead to ischemic stroke and stroke can sometimes be aggravated by or associated with the development of migraine.” Twenty-seven percent of all strokes suffered by persons under the age of 45 are caused by Migraine. Stroke is the third leading cause of death in this country. In addition, twenty-five percent of all incidents of cerebral infarction were associated with Migraines, according to the Mayo clinic. Most recently the British Medical Journal reported that after evaluating 14 major Migraine & stroke studies in the U.S. and Canada that Migraineurs are 2.2 times greater risk for stroke than the non-migraine population. That risk goes up to a staggering 8 times more stroke risk for women Migraineurs on the pill!
Migraine and epileptic seizure disorders are also interrelated. The most intimate interrelationship between the two being Migraine-triggered epilepsy. Migraine affects up to 15% of the epileptic population. In basic terms, Migraine and Epilepsy are both disorders characterized by paroxysmal, transient alterations of Neurologic function, usually with normal Neurologic examinations between events (attacks).
Not only can the Migraine disease be life threatening, but it can have a devastating and disruptive effect on normal living. Migraine sufferers experience not only excruciating pain, but social ostracism, job loss, disruption to personal relationships, and prejudices in the workplace.
Oftentimes people think that those with Migraines just can’t handle life, or, in reality, are drug addicts or alcoholics. Such perception can be formed when, for example, people see a Migraineur wearing sun glasses indoors (photo sensitive), lying in a dark and silent room (photo and sound sensitive), making frequent trips to the rest room (nausea and vomiting), leaving early, working late, slurred speech, all what they may think is erratic behavior. According to Dr. Sheftell, “Historically, patients with the most intractable Migraines experience a downward spiral in terms of income and contributions to society at large.”
Also, a recent study showed that the loss of labor time and lost productivity of Migraine sufferers may exact a significant toll on U.S. business. According to a position paper signed by the American Academy of Pain Medicine, et. al., 150 million work days per year, equivalent to 1,200 million work hours, are lost each year to head pain. The corresponding annual cost to industry and the health care system due to Migraine amounts to $5 to $17 billion.
MYTH: ANY DOCTOR WILL RECOGNIZE AND PROPERLY TREAT MIGRAINE.
REALITY: MIGRAINE IS ONE OF THE MOST MISDIAGNOSED, MISTREATED AND LEAST UNDERSTOOD DISEASES.
The fact that so many doctors don’t take Migraine seriously can be as disabling to the Migraineur as the disability itself. The leading doctors in the areas of neurology and head pain have themselves stated that this disease is grossly misunderstood and misdiagnosed. In fact, 60% of women and 70% of men with Migraine have never been diagnosed with this disease. This medical ignorance and corresponding inaccurate writings unfortunately perpetuate the myths and misunderstandings about Migraine and convey this to the general public.
Dr. Saper stated that “Migraine is a serious and underestimated health problem … Patients with Migraine are shunted along an assembly line of misdiagnosis, undertreatment, or frank mismanagement. They are subjected to unnecessary procedures and preventable consequences.” And as Dr. Silberstein wrote to M.A.G.N.U.M., “Migraine sufferers must not only cope with their pain, but also with society’s misunderstanding of the disorder. Migraineurs are frequently dismissed as neurotic complainers who are unable to handle stress. The truth is that they frequently battle against great odds in order to hold down jobs and support families … Young Migraine sufferers sometimes miss enough school so that they are unable to graduate with their peers.”
Similarly, Dr. Sheftell stated “In addition to misdiagnosis and under-diagnosis, Migraine sufferers will bear the brunt of discriminatory policies by a variety of health care agencies.” Such agencies may deny reimbursement for emergency room visits and for hospitalizations for the most severe sufferers. It is not uncommon for doctors to think that a Migraine sufferer is in the emergency room to receive drugs, and dangerously turn them away.
Because Migraine is a genetically-based disease, severe Migraine, according to Spectra Biomedical, “will be diagnosable by objective DNA tests with in the next few years. These tests should also lead to a significant improvement in the disease management of this common and often disabling illness.”
Improved health care related to the Migraine disability is one way in which M.A.G.N.U.M. is working to improve the life of Migraineurs. M.A.G.N.U.M. is working with U.S. Senator Charles Robb to include Intractable Migraine in the Code of Federal Regulations “Listing of Impairments” Parts A & B. This is an immediately achievable health care reform on which Senator John Warner (R-VA) & Congressman James Moran (D-VA) have committed to work with M.A.G.N.U.M. on.
According to the world’s leading Migraine disease epidemiologist, Dr. Richard Lipton, of the Albert Einstein College of Medicine of Yeshiva University, — “Education and empowerment are the keys to successful Migraine management. Patients, who understand their disease, identify their triggers and learn to use both behavioral strategies and medications effectively can dramatically reduce their burden of illness.” MAGNUM in working hard to continue to empower Migraineurs by keeping access to quality information about their disease ever available and current.
We are far from a cure, let alone a sure-fired treatment, for Migraine. But understanding that Migraine is a real and debilitating disease goes a long way toward improving the quality of life for Migraineurs and their loved ones.
And if you are not a Migraine sufferer, then remember the next time you offer advice to the person in your life that suffers from Migraines, make sure it’s not toxic (i.e., you need to avoid stress, cheer up, don’t drink Coke, or other well-meaning but emotionally debilitating statements). Rather, offer to turn down the lights and the TV, and let them know you understand. Remember: Migraine is an “invisible” disorder. “Well! I’ve often seen a cat without a grin,” thought Alice; “But a grin without a cat! It’s the most curious thing I ever saw in all my life!” Like Alice’s Cheshire-Cat who sat in a tree revealing himself only to Alice, he nonetheless had great impact on her daily travels, as Migraines do on individuals who suffer from them.
( Michael John Coleman and Terri Miller Burchfield are both Executive Board Officers of M.A.G.N.U.M.: Migraine Awareness Group: A National Understanding for Migraineurs, a non-profit health care public education organization dedicated to bringing public and government awareness to Migraine as a true organic neurological disease. Mr. Coleman is a nationally-recognized artist who has suffered from intractable Migraines since the age of six. If you would like further information or would like to help M.A.G.N.U.M. achieve its goals, please contact them at 100 North Union Street, Suite B, Alexandria, VA 22314 phone: (703) 349-1929 fax: (703) 739-2432 web: www.migraines.org )