Chronic migraine is not "all in our heads" . It affects our bodies, careers, families, social lives. . . .Every aspect of our lives is touched by this disease.
In the course of trying to research chronic migraine, I found that there was very little information available or what was out there was confusing. In September of 2012 Chronic Migraine Awareness (CMA) became a 501(c) (3) non profit organization. Along with fellow sufferers we have learned that we have had to become our own advocates. This site is run by chronic migraine sufferers for chronic migraine sufferers. We are people supporting people. All the work that is being accomplished is done in spite of our frequent, or (for many of us) continuous, pain. We do it, because we need to do it. Let this place be the first step to a healthier, happier and above all, a pain-free life.
There is now a ribbon to represent our condition. The reason for this is that the diagnosis of being chronic we are faced with challenges that the episodic or occasional sufferer does not have to deal with. Primarily it means that we don't have the break or any clue as to when our cycle will end. Once the migraine has begun it could last weeks or months. The current treatments have not worked and we are faced with a potentially bleak life. The purple represents the chronic pain that we are in along with the comorbid conditions that frequent the chronic migraines; the red stripe represents how migraine disorder cuts into our lives. It makes us see red in anger for the people we no longer are, for the lives we can no longer lead. Many are forced to quit working and are unable to do even the simplest of chores without bringing on a raging migraine.
One of the most common comorbid condition is depression, which is brought on by living in constant pain. The colors of purple and reds stripe have an added black in recognition of those that have taken their lives in order to end the pain. As Chronic Migraine sufferers we are three times as likely to commit suicide because of the constant agonizing pain. I personally have considered it myself, after failing an added treatment and having my doctors fire me because my health hadn't improved. The worst thing about our condition, though, is this: CM doesn't discriminate, affecting both sexes, and all ages. it victimizes the youngest among us. Migraine disease affects infants and has recently been linked to colic. Children, teens will most likely become chronic later in their lives unless we can put an end to a condition that has lasted 9,000 years. Most of those that are chronic had their first migraine as a child, often brought on by puberty. This is not always the case though. Many adults, especially those that play violent sports and those that have served in the military have also become victims as well. Concussion injuries are serious and often dismissed. This attitude of "it's just a headache" is what has gotten us to where we are now.
There are many reasons why people are not treated properly or accurately diagnosed. Some people feel they aren't that sick because it's "only a headache." Nothing is falling off or catchy, so it can't be that bad. Others lack insurance or the money to be able to see a doctor. An MRI can cost $1500, an essential diagnostic tool. We often play the game of "how much can I afford to pay to be healthy". Then there are the uneducated doctors that dismiss their patients. Many have been misdiagnosed with "sinus headache" or "sinusitis." Many people with migraine have actually been told "it's all in your head." I was told at my first visit that maybe my ponytail was too tight! It is vital to pursue and advocate for yourself. It is the only hope of avoiding becoming chronic.
Migraines are not cut and dry, there are types, and with each type there are particular effects and conditions that go with it. We experience visual disturbances, vomiting, nausea, extreme pain, among a host of unpleasant symptoms. Often our symptoms can mimic those of a stroke and we are at higher risk for strokes, according to recent research. Migraine disease is not easily treated. There are no drugs specifically created for the prevention of migraine. There are medications that are used off label, meaning as a side effect people that suffered from a primary condition of high blood pressure, after taking this medication experienced fewer migraines. Now the drug companies make double the money off of one drug. We need our own medicine meant to treat and prevent this neurological disease. We need the doctors and specialist to dedicate more time to research and study.
Out of necessity we have had to become our own advocates. We have had to fight for what we know to be true, that it is not "all in our heads", that what we feel is real and is agony. This website is meant to be an aide to those that have had enough of being pushed around by doctors, when you know more about the disease than they do. There is a difference between being a headache specialist and a neurologist, to find a qualified doctor in your area check the National Headache Foundation. Most doctors only are required to have 4-10 hours to be considered a specialist so do your research, make sure the doctor you see knows what he/she is talking about.
Thanks to Facebook, there are now close to 30 support groups for Chronic Migraine sufferers as well as those that care for us. In this place you will find that you are not alone, and can ask questions of fellow sufferers. If you have ever wondered if you are crazy, or if anyone else feels the way you do, then this is the place for you.
Catherine Charrett-Dykes, Pres & Founder of CMA,Inc.
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Chronic Migraine Awareness is a non-profit organization.