A Community of Support
Providing essential information and resources for families affected by migraines and chronic illnesses.
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The Migraine Manual is my passion project designed to help children during a scary diagnosis with accessible and reassuring information; something I lacked when I was diagnosed. Below are some resources, fun pages, and my story that I hope will provide hope.
Helpful Resources:
Here are some coloring pages for stress relief!
Pre Diagnosis:
I was always healthy; migraines had never touched my life. For a few months before my first major episode, I was having 'mini' headaches. I did not tell anyone because I did not think they were important. I later learned I was just not listening to my body.
Diagnosis:
During the COVID pandemic, I was rushed to the hospital with stroke like symptoms- I could not talk correctly, my left arm was weak, I was throwing up, and I had the worst headache ever. It was a blur, but I remeber the confusion associated with being in a hospital at 12 with no major health or biological knowledge. I was confused as to why everyone around me was concerned and I did not know how I could best help myself. After IV bags, MRI's and a sleepless night, I got my diagnosis.
Post diagnosis:
A doctor came in and diagnosed me with complex migraines. I knew migraines were a really bad headache, but I did not know how variable and inconsistent with one definition they are. I also did not know that I, as a relatively healthy 12 year old, could be affected. No One around me knew what complex migraines were. I turned to Web Md and Grey's Anatomy to supplement my lack of knowledge. That turned out to be the wrong path and I became a hypochondriac, always concerned I had something gravely wrong with me. After many reassuring doctors visits and tests, I became more confident in my health and learned how I could best help myself when navigating a new diagnosis.
How I have changed:
I was very scared as to how my diagnosis would affect my life. Would I be able to drive? Travel? Would I ever lose my speech again? Scared that I was losing control over my life, I vowed to use my voice and advocate for myself. I found amazing doctors with whom I felt comfortable asking infinite questions. I found reputable resources for my age and knowledge range so I no longer confused or scared myself with unfamiliar terminology or concepts. I have been able to build the life that I have wanted. I can drive, manage stress, and I am very vocal about my wants and needs so it is safe to say I did not lose my speech. Although I continue to suffer from migraines, they have evolved just as I have learned what works for me. Everyone's symptoms and experience are unique, but one commonality is the need for reassurance post diagnosis for any chronic illness. After finding and using my voice, I have created the Migraine Manual to help others do the same through education and advocacy.
My Story
Helpful Videos:
VIDEO FOR PARENTS 1
From me to you!
VIDEO FOR PARENTS 2
For teachers
