By Robert (Guest Writer) - Dear Dr ______, I owe you a short note. I’m about to call a spade, a spade. I’ve been left in an anxiety dither for these months since I saw you in October. That’s why I haven’t followed up with anything. I was VA-stunned by deja vu when you asked … Continue reading A Veteran’s Story of PTSD & Headache
By Jeannette - Within the chronic illness community we speak a lot about the importance of visibility. We discuss the need to self-advocate, to have our rights heard, and the importance of speaking out against stigma, especially when you have an illness that has debilitating symptoms that impact our interactions with the world, but aren’t always … Continue reading The Vulnerability of Visibility
By Jeannette & Jorie - Every year in February, advocates for migraine and headache disease come together in Washington, DC for an event known as Headache on the Hill. HOH is organized by The Alliance for Headache Disorders Advocacy (AHDA), and has been running now for 12 years. During HOH, advocates of all kinds -- … Continue reading Voices from the Hill
By Jeannette -It’s a critical time for all people who are impacted by pain, regardless of the cause. It is a time to unite on our journey with pain and over the next 90 days join the discussion of the gaps in the management of pain and the solutions put forth. This is a time … Continue reading What is the Draft Report on Pain Management Best Practices, Why Does it Matter, & How Can You Have A Voice?
By Wanda - Lets start at the beginning with the definition of “research”: 1. Noun - the systematic investigation into and study of materials and sources in order to establish facts and reach new conclusions 2. Verb - investigate systematically Remember doing research papers in school? In order to become our own best advocate, we … Continue reading Migraine & Headache Disease Research
By Sarina - Awareness is desperately needed for both headache disorders and chronic migraine. Both of these conditions are incredibly misunderstood by medical professionals as well as by your average Joe on the street. People who suffer from headache disorders and chronic migraine simply get told to “take some Tylenol and drink water,” as if … Continue reading 5 Easy Ways to Raise Awareness
By Alexandria & Wanda - Our Stories Alexandria: The smell of smoke woke me in the middle of the night. I got out of bed fast, prepared to evacuate my apartment. I heard people talking and assumed that others were already leaving the building. When I got to the hallway, however, it was empty: there … Continue reading What it’s Like to Live with Hemiplegic Migraine
By Winslow - I live with cluster headaches, also referred to as trigeminal autonomic cephalalgia (TAC). According to the American Migraine Foundation, cluster headaches are said to be, “the most painful of all headaches. They have been described as “suicide headaches.” What sets these “headaches” apart from a typical migraine is the specific attack on … Continue reading My Experience with Cluster Headaches
By Jorie & Jennifer - How We Got into Advocacy Jorie: Advocacy. That word didn’t bear much meaning to me… until I got sick. When I got sick, chronically ill to be exact, advocacy took on a huge, incredible, magnificent, symbolic meaning for me. Right now, I am diagnosed with chronic complex migraine, episodic cluster … Continue reading Why We Advocate & Why You Should Too
By Wanda - There are few things you need to know when talking migraines and disability. First, either you, or someone you know suffers from migraine—and no, not just because you are reading this blog. According to NIH and a 2015 study, migraine effects roughly 1 out of every 6 Americans, and 1 in 5 … Continue reading Migraine & Disability: A Battle Fought Round the World
