Young migraine sufferer strives to help others affected
Thursday, January 21st, 2016
Girl Scout, Daisy Griffin, embarks on a fantastic project to write a migraine book for children
Daisy, from the USA, recently contacted us after hearing about Migraine Action’s Get Creative art competition from a friend who runs a migraine support group.
Daisy knows all too well how bad a migraine can be:
“Both of my parents get severe migraines, so when I was younger and frequently getting really bad headaches that kept me in bed and throwing up, they knew what was going on. I had my first MRI and was diagnosed at age 5!
Life with migraines has always been hard, but for a while I was doing pretty well. During the past few years, however, my migraines have been getting worse, and last year my migraines reached the point where they were almost daily, and not even my prescribed medicine could lessen the pain.
After a particularly bad 10 day migraine that sent me to the hospital for a few days, my parents and neurologist decided we needed to do something.
I ended up staying for a week at St. Joseph's Hospital in Chicago. There is an entire unit at the hospital just for migraine patients, run by the Diamond Headache Clinic. They started me on DHE (Dihydroergotamine) through an IV every 8 hours for 2 hours.
The first time I was in the hospital in New York, I was given the DHE every 6 hours over 30 minutes, which made me throw up a lot and made it impossible to sleep well. The situation in Chicago was much better, and since I wasn't sick all the time, I could try many alternative treatments. I did biofeedback, which is when they put electronic sensors on my head and hooked me up to a computer so I could see my tension levels and what made them better or worse. I also did yoga and got to talk with other migraine patients, some even younger than I am!
The doctors also put me on two new preventative medications, Nortriptyline and Bystolic. Since my stay in the hospital, I have been doing a lot better. I really feel like the medicine I’m on is working, along with the alternative treatments and techniques I learned!”
Daisy needs your help!
As part of the Girl Scouts America Gold Award (the highest achievement that you can earn), Daisy must complete a “take action project” that has a sustainable impact on the world. And what better subject to focus on than something she knows all too well - migraine.
We asked Daisy to tell us more about why she had chosen to focus on migraine for her Gold Award;
“Now that I’m doing better, I want to do things to help other people with migraines who are still suffering. This past summer, I sailed across the Long Island Sound to raise money for migraine research. Now I have a new project as part of my Gold Award!”
“I decided to begin writing a migraine book. I know how hard it is to grow up with them. I felt frustrated and lonely.
I had no idea that so many other kids were going through the same thing! Now I know that 10% of school-age children suffer from migraines, and half of all migraine sufferers have their first attack before the age of 12.
When I first came up with an idea to write a children’s book, I searched around for books for kids with migraines. I was surprised that I wasn’t able to find any! My goal is to write a book that explains what a migraine is, how it feels, and tips for dealing with it. I also want to let kids know that this is not something they are alone with, and that lots of other kids have or are learning to live with them.
What you can do?
"If you are under 18 and you experience migraines, or you know a child or young person with migraines, then I’m asking for your help! I’d love to receive any drawings and/or comments about:
1. How you feel when you get a migraine, and
2. What helps prevent or treat your migraines? (Please include the child’s first name and age).
I plan to share the migraine book within and beyond my local community, and inspire others to take action too.”
If you would like to help support Daisy in her project to break migraine stigmas, send your artwork or comments to Migraine Action 4th Floor, 27 East Street, Leicester LE1 6NB, or email it to firstname.lastname@example.org