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What is a Migraine Attack Really Like?
Have you ever wondered what a migraine attack is really like? For anyone who has ever experienced a bad migraine attack you will be well aware that it is so much more than just a headache – it is often a whole body breakdown that can leave you only partially functioning or even unable to…
Read MoreIntroducing Empowering Patient Voices
Empowering Patient Voices Launch Hope for Migraine and Migraine Meanderings are excited to announce the launch of our Empowering Patient Voices initiative. In 2021, this initiative will be introducing three approaches to Empowering Patient Voices: Out from the Shadows: Real Voice of Migraine Out from the Shadows: Migraine Behind the Mask Out from the Shadows:…
Read MoreHow Do You Live Your Dash?
My favorite place to take my puppy for a walk is the cemetery. It is just a calming place to me. I love to read the headstones and think about the life each person lived; how they “lived their dash.” While we can learn from our past we should never dwell on it. And we gain nothing but stress if we worry about our future. But we can think about how we live our dash; our present life.
Read MoreCOVID COVID Go Away – A Test in Self Advocacy!
As it turned out, self-advocacy really was the key. Learning to advocate for myself made all the difference as I faced the unknown. Self-advocacy is such an important part of chronic illness, but one that sadly we often set aside. Remember, your healthcare is about YOU, and your relationship with your doctor is a PARTNERSHIP. You have a right to speak up. You have a right to be heard and taken seriously. You have a right to be involved at every level!
Read MoreMigraine Is Invisible – But We Are Not
Migraine is invisible but we are not and this is our voice. The voice of 40 million in the USA and 1 billion worldwide.
Read More5 Reasons to Join An Online Headache Community
Online groups have evolved over the years, but one thing has not changed – their ability to bring people who have something in common together, even though they are miles apart. They have served people for some time now, and have their own niche, a niche that is essential for connection and creating community.
Read MoreWhen the Migraine Monster Touches Your Child: Part 2
One of the saddest aspects about migraine from my perspective is that it doesn’t discriminate when it comes to age. I recently sat down with my oldest son, Joel, and talked about how migraine has impacted his life. What it was like growing up not only watching me in pain, but then dealing with it himself.
Read MoreBuilding A Sense of Community – A Daunting Task?
Migraine can be a rough disease to live with and learn to manage. One that can easily leave any of us feeling emotionally and socially isolated. I can finally say that the migraine community has become an important part of my life, but it has been quite a journey. For many of you the pressing question may be: How do I even begin to get connected?
Read MoreWhen the Migraine Monster Touches Your Child: Part 1
I will never forget the day that my oldest son, Joel, called me into his room and said: “Flashy lights, mommy! I see flashy lights!” He was not quite 9 years old and my heart sank. At that time, I knew little about the hereditary risk of migraine but quickly found myself on a steep learning curve. Less than two years later, I went through the same heartbreak with my second son. The disease took on a new face, a more personal and challenging face.
Read MoreA Journey Towards Self-Advocacy
I know for many self-advocacy is difficult. It is time consuming. It is hard to do when you are in pain. It is frustrating, being sent from one person to another and back again. It is discouraging dealing with unfriendly people, and it can be incredibly hard to find a good doctor to work with. In short, it is not easy! However, it is something we all must learn to do in order to get the very best treatment we deserve for our health.
Read MoreCGRP Inhibitors and Realistic Expectations
I’ve never quite understood the fatal attraction of rollercoasters! As the mother of three boys, I spent the better part of two decades trying in any way that I could to avoid getting on one of those beautifully gut-wrenching, twisting, heart-stopping monsters! Somehow, it seems to me that trying to manage migraine isn’t so very different. There are ups and downs, twists and turns, some incredible views, but a lot of groaning and longing for the “monster” to end.
Never was this more obvious than with the emergence of the new CGRP inhibitor medications in 2018: Aimovig, Ajovy and Emgality.
Read MoreHow Virtual Communities Are Shaping Migraine Advocacy
Migraine and headache communities have cultivated a safe space in the virtual world. As COVID-19 changed the landscape of the world around us, the headache community maintained its steady pace of providing content to those in need. What has amazed me is how the community has continued to rally with patients. While I have found online communities helpful for many years, I noticed something special about this community. Patient advocacy is the heart of the community.
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