Patient Stories
Migraine Behind the Mask: Making a Difference Together
What Does Migraine Look Like For You? Every year, Migraine Meanderings asks our migraine community to participate in the Migraine Behind the Mask awareness campaign. This migraine advocacy campaign aims to help people without migraine better understand what life with migraine is like. Migraine is a highly stigmatized disease, and our campaign lets people with…
Read MoreOn a Deserted Island with Migraine?
“How can I feel lonely? I have my family around me and it’s my birthday weekend. Our daughter is visiting, who I haven’t seen in a while, and she’s spending 4 days with us–I’m over the moon excited! I have a migraine action plan that my headache specialist and I developed which, hopefully, will keep…
Read MoreJourney On: My Journey Living with Vestibular Migraine
The Beginning Looking back now, my journey began 11 years ago on July 14, 2011. Little did I realize that my life would change forever on that day. I remember having a history of bad headaches on and off since college, but now I had begun to experience horribly intense ones. I will always remember the afternoon…
Read MoreMy Experience with Ketamine Infusion at Jefferson Headache Center
Ketamine is a medication that is sometimes used off-label for migraine treatment, and headache specialists on the cutting edge of migraine treatment sometimes prescribe it as a nasal spray or by in-patient infusion. Many patients aren’t aware that this is an option, and there is little known about what it is like to get an in-patient infusion,…
Read MoreSigns It’s Time for Prevention
As someone who lives with migraine, do YOU realize how IMPORTANT it is to be aware of your silent disease?? I’m not speaking of just your attacks but also your overall migraine days. Do you know the difference? Is there a difference? Do your days blur into one long week or month? And, did you know that there are signs to be aware of that show you need to consider preventive treatment, or reconsider the preventive treatment you are on. Yes, that can be scary, but the consequence of not being proactive with this disease can have a disabling and long-term impact on your life.
Read More“I Hope You Feel Better”
Parenting with migraine is not easy, but holding tight to sweet moments helps keep things in perspective.
Read MoreParenting with Migraine
Teaching kids how to do things for themselves is helpful for when I have a migraine. But, it also empowers them. When my daughter was 3, instead of feeling defeated that I was struggling to make her a sandwich, I tried to celebrate that my 3 year old could make her own sandwich! It taught me to reframe my perspective, and that has been incredibly helpful ever since!
Read MoreChronic Migraine: Please Believe
Chronic Migraine: It’s real- please believe!
Behind that smile is an ocean of tears
Tears you will likely never see
Known only to those closest to me
Who watch the struggle to rise above
The courage it takes to face another day of unknowns and fear.
How 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 MoreHope Will Long Last
A migraine poem by Deborah Bloom: Hope Will Long Last – Some may question this disease that they cannot see but it is not invisible to you and to me. Migraine you may refuse to let me loose, but I will continue on my quest; today and the tomorrows I will pick myself up and strive to do my best
Read MoreConstant Companion
Pain is our constant compaion
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