There is no shortage of online migraine information (or misinformation) lately. It seems whenever I check my social media feeds or Google, so-called experts have something to say. For instance, sharing the latest treatment hack, like soaking your feet in hot water to stop an attack! By the way… in case you’re wondering, that doesn’t work! One of our goals here at Migraine Meanderings is to provide not only current, evidence-based information to help counteract the storm of misinformation, but also to elevate the voice of the patient so that others can hear the real voice of migraine. When patients share their stories, experiences, and knowledge, not only do others who live with this disease learn better how to manage migraine themselves; but also, we are able to raise awareness about migraine in society in general.
The Real Voice of Migraine
In 2023 we are delighted to have several patient advocates who have been willing to speak out about life with migraine in a series of short videos. They share their concerns, struggles, and guidance for others. Through these videos, we encourage people to explore the latest, evidence-based migraine management information, which includes the migraine treatment toolbox, to find a doctor educated on headache medicine who will work with you, and to advocate for yourself. These videos help amplify the patient voice by shining a light on the lives of real people. Here are a few of the topics our patient advocates cover:- Aaron shares how his body feels like it’s short-circuiting during a migraine attack.
- Erica (from Achy Smile) reminds us there are a lot of treatment options to try.
- Kelly explains why the ER is the last place you want to be during a migraine attack.
- Jessica shares how she’s creating a treatment toolbox for her adolescent daughters.Â
- Angel discusses the importance of being your own best advocate.
- Kerrie (from The Daily Headache) points out how the stigma of migraine is everywhere.Â
- Marina (from Parenting with Migraine) tells us how migraine is a progressive disease.
- Shoshana (from Migraine Meanderings) explains how medical devices are a trusted tool in her treatment toolbox.
Many have come together to share:
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The hardest part of living with migraine.
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The one thing I wish I knew when first diagnosed.
Migraine Behind the Mask: We also asked migraine warriors from our online community if they would be willing to give us a glimpse into how migraine impacts their lives. You can find some of their answers in our 2023 Migraine Behind The Mask awareness campaign video.
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Other Educational Resources for Everyone
In addition to Real Voice of Migraine and Migraine Behind the Mask, this year we provided multiple educational events for people living with migraine. We offered live question-and-answer discussions with top migraine and headache disorder specialists. You can find these recordings posted on our YouTube channel, and watch discussions of topics like:
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How to manage a migraine that lasts over 72 hours.
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Managing migraine in young adults and adolescents.
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Taking a holistic approach to managing migraine.
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Migraine during pregnancy and lactation.
- Ask Us Anything About Migraine!
Online Support
For those of us living with chronic conditions, online support can be a lifeline. Our online support communities are available 24/7 and moderated by migraine patients. This is a safe place to ask questions, share information, and talk with others who “get it.”
We update our website resources and blog series weekly. Our patient advocates write blog articles based their personal experiences and scientific data.
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Migraine Meanderings is not only for people living with migraine. Our extensive resources can help everyone better understand this debilitating disease. Caregivers, friends and family, and even coworkers can learn from our resources. The more people without migraine understand, the better they can support those who do.
Help Us Reduce Migraine Stigma
We want to reduce migraine stigma. The best way to do this is to share both patient stories and evidence-based education. You can help spread awareness by sharing our resources. You can lend your voice to our advocacy efforts. And, you can make a tax-free donation to our non-profit or organize a Facebook fundraiser to ensure our resources remain free to all.