Understanding Migraine Disease and Migraineurs

By Teri Robert patient

patient educator/advocate, author Chair, American Headache and Migraine Association

If you’re reading this, someone close to you is a Migraineur, someone diagnosed with migraine, a genetic neurological disease. Migraine is one of the most misunderstood, underdiagnosed, and undertreated of all diseases. Unless you’ve experienced the pain and other debilitating symptoms of migraine yourself, it can be difficult to understand until you learn more about it. It is not an exaggeration to say that some people have taken their lives to escape the pain. In addition to sometimes extreme head pain, migraine can be accompanied by other symptoms including nausea, vomiting, dizziness, extreme sensitivity to light and sound, temporary loss of vision, inability to concentrate, difficulty in speaking/finding the right words, depression, panic attacks, and far more.

The slightest movement can cause such pain that migraineurs have described it as “an ice pick in my eye,” “my head breaking into pieces,” and “my brain is exploding.” To put it plainly, migraine can be be absolutely devastating.

Here are some basics about Migraine Disease that you should know:

 Based on the most recent U.S. census statistics, Migraine disease affects more than 37 million people in the United States alone.

 Migraines are NOT headaches. Migraine is a genetic neurological disease, similar in some ways to epilepsy. The head pain of a migraine attack is only one possible symptom of an episode of migraine disease, just as a seizure is only one symptom of an episode of epilepsy.

 Migraine disease is NOT a psychological disorder. The disease and all its symptoms are neurological in origin and very, very real. Migraineurs are not neurotic, lazy, “high-strung,”overly emotional, or faking. They are in very real pain and physical distress.

 Not all doctors have the experience and knowledge to properly treat migraine. Finding a doctor to properly treat migraine is one of the most important, and sometimes most difficult, steps in treatment.

 There is NO CURE for migraine. Most migraineurs, with the help of a qualified doctor, can find preventive regimens that will prevent many, but not all, Migraine attacks.

 Migraine abortive medications such as Imitrex, Zomig, Maxalt, Amerge, Axert, DHE, and Migranal, do not work for all migraineurs. It is sometimes very difficult to find medications that will relieve the pain and other symptoms of a migraine attack.

 Migraine attacks can be dangerous. Just having migraine disease increases the risk of stroke, heart attack, and other cardio- and cerebrovascular events and diseases.

 A migraine attack can, in rare cases, actually be fatal. An otherwise healthy 21-year-old member of our community died of a migrainous stroke in November, 2001.

 Migraine disease can be disabling for some migraineurs to the extent that they qualify fordisability income or qualify for accommodation under Americans with Disability Act. There are many whose disease is so severe that doctors are unable to control the attacks, and the migraineur is unable to work or participate in “normal” daily activities. When a migraine attack strikes, most migraineurs desperately need a dark, quiet place to lie down.

 Migraine attacks can be triggered by many things:

o Perfumes and fragrances from other sources are a very common Migraine trigger.

If you live or work with a Migraineur, please refrain from wearing fragrances around them.

o Bright and/or flickering lights, especially fluorescent lighting — some migraineurs need to wear sunglasses, even inside.

o Many foods can be triggers, especially foods prepared with MSG.

o Loud noises and crowded places can also be triggers.

o Changes in weather are triggers for many migraineurs.

o Cigarette smoke, exhaust fumes can be strong triggers.

o Each migraineur’s triggers vary. There are many other potential triggers. This list is just a beginning.

o Stress: There is still some controversy about whether stress itself is a Migraine

trigger or an exacerbating factor that makes o Perfumes and fragrances from other sources are a very common Migraine trigger.

If you live or work with a Migraineur, please refrain from wearing fragrances around

them.

o Bright and/or flickering lights, especially fluorescent lighting — some migraineurs

need to wear sunglasses, even inside.

o Many foods can be triggers, especially foods prepared with MSG.

o Loud noises and crowded places can also be triggers.

o Changes in weather are triggers for many migraineurs.

o Cigarette smoke, exhaust fumes can be strong triggers.

o Each migraineur’s triggers vary. There are many other potential triggers. This list is just a beginning.

o Stress: There is still some controversy about whether stress itself is a Migraine trigger or an exacerbating factor that makes migraineurs more susceptible to their other triggers.

The Migraineur(s) in your life need your help and understanding. They need you to realize that they cannot help being ill, they are not “having headaches for attention,” and they are sometimes unable to care for themselves. If they need medical attention, they need someone to take them and be with them. As well as being extremely painful physically, migraine can be devastating emotionally and to relationships and careers. Since the disease is so misunderstood, migraineurs often feel alone, isolated, and desolate. They also often feel guilty because they are not able to “be there” for their family and friends as much as they want to be and because they may have to miss days of work. The migraineur(s) you know need not only your help with getting their medicines and any medical care they may need; they need your moral support every bit as badly. A good, solid support system is as important to Migraineurs as their health care teams. YOU are very important to them. That’s why it’s important that you understand Migraine.

If you have any questions or need more information, please email me at teri@terirobert.com.

Sincerely

Teri Robert

©Teri Robert, 2001 – Present

Last updated February 3, 2015. wpid-wp-1421975721526.jpeg

http://www.HelpForHeadaches.comhttp://www.HealthCentral.com/migrainehttp://www.MigraineAdvocacy.org

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