Chronic Migraine Awareness

Written by Kristen Estep

Originally seen on MigraineHeadacheAwarenessMonth.org

Gina’s first memory of migraine was when she was about 5 years old, however her mother tells her that she has shied away from all light since birth, and was an extremely colicky baby, so she may have actually suffered since birth.  She states that her symptoms included head pounding, photophobia and vomiting profusely.  When asked to describe how she felt emotionally as a child with extreme head pain, Gina states that “she felt very scared and didn’t know what to think except for when it was going to stop.”  Even though she suffered with these symptoms, she was not diagnosed by a doctor until she was twelve or thirteen years old.  Gina has been diagnosed as having chronic migraine with aura and intractable migraine, she experiences symptoms daily.

Migraine has affected all aspects of Gina’s life “I have never known what it is like for light not to hurt, and wondered how everyone else managed it without shielding their eyes too?”  In school, Gina says that migraine affected her ability to think and concentrate and this continued through college, which affected her grades.  As she got older, her symptoms worsened and attacks became more frequent which caused her to either miss work or do sub-par work.   Gina said that sometimes she pushes herself beyond her limits and ends up paying for it at the end of the day.  “It is really frustrating to miss out on activities with my kids especially,  and to disappoint them when symptoms are too much to bare.” 

“I always wanted a way to make my pain productive (my motto), so that my suffering could be used to help others with migraine, including my children who also have it. In 2012, I started searching migraine groups on Facebook and came across Chronic Migraine Awareness, Inc. I became an Admin of CMA’s support groups, and then also became involved as an Admin for another migraine support group for a little while. More recently, I began my own small page, Migremlinchick for which I started sharing educational information and creating my own graphics. That page came about after I would jokingly give a name as to what was causing my migraine to flare…gremlins in my head, dubbing them,  “migremlins”. I currently run Migremlinchick, Admin for CMA’s support groups and also serve as their Director of Graphics and Social Media.”

Gina advocates by educating those both with and without migraine disease as to: what it is, how it impacts you, how it’s symptoms run along a spectrum affecting everyone differently, our limited treatments and limited funding for research. Advocating also means educating and bringing awareness to others as to what migraine is NOT in order to stop the stigma surrounding it being just a headache, or that it supposedly has a cure. Gina says “it is also important to educate myself, on the different types of migraine, symptoms and treatments, as no two people experience migraine EXACTLY the same. There are similarities and differences that we either share or do not share, so it is important to be able to relate to people or have some background to understand where they are coming from. I advocate by sharing information from reliable sources, creating images, including my own content, and by participating in initiatives within the migraine community. I also request proclamations at the state and city levels, declaring June as National Migraine and Headache Awareness Month and June 29th as Chronic Migraine Awareness Day. Sharing educational materials about migraine awareness initiatives within my community, whether it be at a doctor office or the grocery store, or distributing them to other advocates is another advocacy strategy that I use. And of course, showing support, sharing experiences and relating to others with this disease they know that they are not alone within the support groups is part of my role as an advocate.” 

When asked how the migraine community contributes to her wellbeing Gina stated “this community has helped me to feel supported on my chronic migraine journey. It has inspired me to continue advocating and spreading awareness, knowing the need for our voices to be heard in order to stop the stigma and have better access to care.”   She also added that she believes that it is important to advocate for your care and treatment.  “Being involved in the migraine community has helped by encouraging me to be more aware of how I am feeling and what my limits are.  It also helps me to stay well informed and up to date on all aspects of treatment and on the latest advancements in research in order to not only advocate for others, but to get the most out of my specialist visits and really be involved in my treatment.”