#1 – Migraine is not “a bad headache”.
Even migraineurs themselves make this mistake by only counting really bad headaches as migraines. The truth is a lot more complicated. Since migraine is a genetic neurological disorder, it is always present. Someone with epilepsy, MS, or Parkinsons never stops having that disorder. These patients may have symptoms that flare up from time to time, but they are never free of the disease. Migraine is like that, too. Pain is only one of many symptoms. By the time someone is aware that they are experiencing at attack, it has already been underway for hours. Symptoms can include hypersensitivity to light, sound, and smell, visual hallucinations (called auras), nausea, vomiting, difficulty comprehending and communicating. Some people experience stroke-like symptoms such as one-sided paralysis, slurred speech, and drooping of facial muscles.
When migraine symptoms flare up, patients often experience headaches. Yet these attacks are so much more than just the symptom of a headache. The head pain patients experience can range from very mild to severely disabling. Sometimes patients get symptom flares without any head pain at all. These are called Ancephalgic Migraine attacks, otherwise known as a “silent migraine”. Some of these other symptoms can include extreme sensitivity to light, sound, and odors. When these symptoms flare up, the five senses are heightened to the point that sensory input is physically painful. Patients may also experience nausea, vomiting, dizziness, vertigo, tinnitus, as well as visual disturbances. The most well-known visual disturbance is the aura. Most people think of an aura as blind spots or wavvy lines distorting vision. Aura can also be any other involuntary reflex of the autonomic nervous system, such as uncontrollable yawning, hiccups, etc.
Migraine has four distinct phases. Headache only occurs during one of those phases. Some patients never experience phases 2 or 4.
Many patients don’t recognize the symptoms of prodrome and must be taught how to identify them. The symptoms manifest differently for each person. Some people experience irritability, mood swings, food cravings, or euphoria. Others have uncontrollable yawning, laughter, or crying. Still others may have auditory, olfactory, and even visual hallucinations. It is common for patients to experience a mix of symptoms. With practice, most can learn to identify their prodrome symptoms. Many patients mistake the mood swings and food cravings of this phase as triggers. They may say, “Every time I cry or eat chocolate, I get a migraine,” when what is really happening is that these symptoms are warning the patient that a migraine is already under way. This phase can last up to 24 hours before the next phase starts.
Only 25% of all migraineurs get this symptom. It is the shortest migraine phase, lasting 15 minutes to 1 hour before the onset of the headache phase. This phase is characterized by distortions of the five senses, most commonly, visual distortions or temporary partial blindness.
Most patients don’t recognize that once the headache phase starts, the migraine has already been going for several hours. If the pain starts out mild, they might wait to treat it, thinking, “I will wait to see if it turns into a migraine.” Here’s a reality check: It’s already a migraine, so treat it now. This is also the phase in which patients will say, “I have a migraine.” Without treatment, this phase can last from 4 to 72 hours.
Once the headache phase ends and the pain is gone, the migraine attack still isn’t over. The body needs time to recover and restore balance to the nervous system. During this time, most patients will say they feel “run over” or “hung over”. It is characterized by fatigue, cognitive slowing, widespread aches, and continued hypersensitivity to sensory input. It can last 12-24 hours after the headache subsides.
#2 – Migraine is a genetic, neurological disorder.
People speak of migraines as though they are isolated events that come and go. This is simply not true. The latest research has shown that migraine is a neurological disorder, similar to epilepsy, in that the vulnerability is always present. The attacks or episodes vary in frequency and severity from person to person. Medications can be used to reduce the frequency and severity of attacks, but the vulnerability is always present. These attacks begin deep in the brainstem and spread across the brain’s cortex, affecting nearly all of the autonomic nervous system. Many patients have adopted the phrase “migraine attack” to describe these periodic flare ups. It is a better descriptor that acknowledges Migraine is a permanent condition that never really goes away.
#3 – There is no known cause.
While many people are able to identify certain things that seem to trigger their attacks, these are certainly not the cause of migraine itself. That would be like saying that strobe lights cause epilepsy, when actually the strobe lights are only a trigger. A trigger is anything that increases the symptoms of a condition. Patients rarely have just one trigger. Some patients are never able to identify their triggers. Some of the more common triggers include: MSG, artificial sweeteners, fermented foods, caffeine, alcohol, bright or flashing lights, loud noises, strong odors, sleep disturbances, skipping meals, changes in routine, dehydration, histamine, changes in weather or temperature, getting overheated or chilled, and so much more. Essentially, the brain of a migraineur is hypersensitive to almost any type of change. Maintaining a steady routine is essential to good trigger management.
#4 – There is no cure.
Like other neurological disorders mentioned above, there is no cure for Migraine. Patients can learn to identify and avoid certain triggers. There are some medications that can abort attacks, but they are not effective or appropriate for all patients. Some off-label medications that can help reduce the severity and frequency of attacks, too. Unfortunately, there are no migraine-specific preventive medications and only one new class of abortive medication in the last 50 years. At best, patients can expect a 50% reduction in frequency and severity of attacks with proper treatment. Some fortunate patients are able to eliminate attacks by carefully avoiding known triggers. Still others experience unexplained remissions, particularly over age 65. About 10% of Migraine patients have a form of the disorder called Chronic Migraine. These patients experience 15 or more headache days every month. Many suffer daily without relief.
Until researchers are able to explain how and why some people have Migraine, a cure will still be an impossible dream. Part of the problem is that there is woeful lack of funding for Migraine research. Migraine affects over a billion people worldwide. According to the World Health Organization, it is the 7th leading cause of worldwide disability. Yet the stigma attached to Migraine is greater than that of epilepsy or other neurological disorders. The level of stigma is closer to that which is experienced by those with mental illness. Most people view Migraine as “just a bad headache” and not as a seriously disabling neurological disorder. When a person misses work or social activities due to Migraine attacks, they can be viewed as melodramatic or mentally ill. The general public typically thinks taking an aspirin is all that is required to stop a migraine attack. While that may be true for some patients with a milder version of Migraine, it isn’t always the case with everyone. Many patients are completely disabled, unable to function at all during an attack.
The National Institute of Health is a government agency dedicated to funding medical research. This research is essential to learning more about how diseases progress, risk factors, causes, etc. Pharmaceutical companies focus their research on developing treatments. That’s great, once the disease process is understood. But there’s little economic incentive to discovering what causes disease. The NIH exists to fund studies that don’t necessarily result in profit-generating medicines. We need this research to find a cure.
Do you have any idea how much money the NIH allocates for specific diseases? Out of 237 funding areas, Migraine ranked 190th with only $19 million allocated for 2013. The estimated amount for 2014 and 2015 is only $1 million more. I realize that there is only so much money to go around. So let’s put this in perspective. If Congress took a mere $250,000 from each of the 189 Research Areas with more funds than migraine and reallocated it into migraine research, that would increase funding from $19 million this year to $66.25 million in the coming years. With that kind of money, we might just find a cure! You might be thinking that’s not fair to researchers of other diseases. Really? Maybe you don’t realize that the top 20 research areas were funded over $2 billion each in 2013. I think they can spare a mere $250,000. It’s pocket change.
#5 – Migraine is highly stigmatized.
Part of the problem is that public perception doesn’t view headache diseases as fatal. Everyone knows that without proper treatment, patients will die from cancer, diabetes, infectious diseases, and heart disease. Headache disorders are viewed as a drain on society. Patients are blamed for causing and perpetuating their disease.
Yet Migraine can be fatal. It increases the risk of cardiovascular disease. Female patients who continue to experience Migraine attacks post-menopause are at an increased risk of Parkinson’s disease. Patients diagnosed with Migraine with aura are at a higher risk for stroke. No one considers Migraine as a contributing factor to these deadly diseases. Neither do they consider the number of Migraine patients who accidentally overdose on medication because they can’t think clearly enough during an attack to remember what they took and when. No one counts the number of fatal car accidents caused by the poor reflex time and visual distortions brought on by a migraine attack. Worst of all, no one counts the number of suicides by Migraine patients who just can’t cope with the symptoms any longer. My life has been touched by the families of patients who have all experienced these life-threatening effects of Migraine.
Hopefully after reading this, you will understand what Migraine really is. Please share this information with others. When someone ridicules a migraineur for missing work or needing accommodations, speak up. When someone makes a joke a Migraine’s expense, speak up. The migraineurs in your life need your support.