A Letter - Fragrance Can be Dangerous for Migraine Patients
You are receiving this note because someone you know, thinks you're important enough that they want you to understand the potential health implications of personal and environmental fragrance.
Most people don't know that Migraine is the seventh leading cause of disability throughout the world. In fact, approximately 12% of the general population has Migraine, and a large portion of them have attacks that are triggered by fragrance. Most people also don't understand that many patients spend thousands of dollars preventing and treating their Migraines each year, and that Migraine can sometimes even be fatal when those powerful medications fail.
Fragrance feels personal because it is something you specially choose and put on your body, or spread throughout your personal areas including your workspace. However, fragrance, like cigarette smoke, becomes a part of the environment we all share.
Migraine patients who are triggered by fragrances are frequently misunderstood and stigmatized by what the outside world sees as a frivolous or even silly problem - the need for clean air. As a patient educator and advocate, this is a top public and workplace problem that is mentioned nearly every day by someone I'm in touch with. I want patients who have suffered in silence, and those who have tried in vain to get their bosses, workplace companions and others, to take the problem seriously. Patients often need to have a new, unique way to be understood. So...
I want to tell you a short story that was in the Express news this week:
Once upon a time, there was a young boy named Glynn who, at the age of 14 began to suffer Migraine attacks. Eventually his attacks began to include some scary symptoms including the loss of the ability to communicate, as well as paralysis of arms and legs. He knows his attacks could cause permanent damage, including stroke and death. This 36 year old father of three has removed the triggers over which he has control, however there is another - his most serious trigger - that he can't control. Fragrance. In fact, his wife's Chanel No.5 triggers attacks that now literally drop him to the ground, unable to move. His wife no longer wears fragrance nor does she use obviously scented shampoo and personal care products. This makes life at home easier for Glynn, but because of his inability to stay away from fragrances when he's away from home, he is now unable to work. Glynn's attacks leave him unable to remember how to use everyday tools like a spoon, and may have caused brain changes that are irreparable.1
We all love things that smell good, but is a few moments of pleasurable scent for you really worth the damage that happens to others?
This isn't a problem with just a single person. Migraines triggered by fragrance are so common, the American Headache and Migraine Association has created a fragrance free area for their national conference this November. This move was inspired by an experience at another conference in June in which all the board members present were triggered by the smell of a single woman mingling about, who no doubt thought her fragrance was lovely. Two miserable days later, it was clear Migraineurs needed a safe haven at their meeting.
I wanted to be the one to tell you about Migraine and fragrance, and the person who has given you this note is very sensitive to your feelings. They may not have even mentioned this serious problem to you in the past. Please understand our intent is not to hurt anyone's feelings, but simply to be able to be a present and productive member of society without putting ourselves in danger of a disabling, or possibly life-changing Migraine attack.
How much has your migraine disease changed or evolved over time?