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Monday, June 18, 2012

Migraine Awareness Month - Post #18: "The Price Is Right"

Today's blogging prompt is "The Price is Right."
 "What one thing would you do for the Migraine community if money were no issue?"

This is a tall order indeed, as the "migraine community" is such a large demographic.  It is estimated that about 10% of the general population are diagnosed with migraine, but many people suffer from migraine without even knowing. They think it's a tension or sinus headache.  Here are a few facts about migraine, and areas that need more research:
  • Migraine is a syndrome that affects many other bodily systems besides the head.  It is difficult to treat because the preventive medicine that works for person A may not work for person B or C. Because migraine has a constellation of different presentations, it is a tricky disease to treat.   It's taken me 5 years, 5 doctors and about 50 different medicines to begin to believe that I am on the right track.  
"Researchers are still unsure about the root cause of migraine disease.  Migraine remains poorly understood and frequently mistreated. Researchers still do not understand many things about the causes of migraine, the role of genetics, the nature of pain, and the reasons why medications work only on some people and in some situations. As a result, sufferers often endure a lengthy process of trial and error to discover an effective treatment. Once a treatment is determined, it may not alleviate every attack, and it may prove ineffective over time." (
  • Migraine is among the 20 most disabling medical conditions, yet very little federal funding is targeted toward migraine research and development of medications and other treatments. In fact, most of the meds we use to treat migraine (with the exception of those in the triptan family) were developed for other purposes, primarily seizure and bipolar disorder. 
  • About 10% of children also suffer from the disease. These young people are often ignored or misdiagnosed.  Development of medication for pediatric patients is very difficult because it is hard to find children whose parents will allow them to participate in drug trials.Virtually NONE of the medications used to treat migraine in adults have been approved for pediatric use.
  • This is a disease that affects three times women as it does men, and includes menstrual migraine.  
  • About 2% of the US population suffers from chronic migraine. This means that we are out of commission with migraine for 15 days a month or more.  Try having a normal life with that kind of disability.  It's nearly impossible.   
  • We try everything and anything to get our lives back, including alternative or complementary treatments such as meditation, massage, reflexology, chiropractic or osteopathic medicine and acupuncture. There is very little research on the efficacy of these complementary treatments. Nearly all of this is an out-of-pocket expenditure. Couple that with the fact that few of us with chronic migraine can work full time, and you've got a very financially stressful situation. 
How can I possibly choose "one thing" to tackle first?  Here is my wish list:
  1. More money toward research on the root causes of migraine, which may lead to more migraine-specific treatments.  
  2. More training for physicians about migraine disease to facilitate early diagnosis so people can have effective treatment from the outset.
  3. More migraine specialists. Neurologists are fine, but migraine specialists are trained to deal with the myriad of migraine presentations and complications. 
  4. More education of the general public so they understand what a truly disabling condition this is.  It's not a hang over or a bad headache. It's nausea, vomiting, diarrhea, dizziness,  cognitive processing difficulties, difficulty speaking, reading or writing, extreme sensitivity of the senses (vision, light, sound, taste, smell and even touch). 
  5. More research on the efficacy of traditional western medicines and of complementary therapies.  
  6. Insurance coverage for evidence-based traditional and complementary therapies proven to work. 

"There is no condition of such magnitude - yet so shrouded in myth, misinformation, and mistreatment - as migraine."
Joel R. Saper, MD, Chair, MRF Medical Advisory Board

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