It's June and it's Migraine and Headache Awareness Month!
A couple of weeks ago, I made the very difficult decision to share Rosie's migraine stories on my blog. We'd had a very rough year trying to get them under control and I decided that it was time to share our plight (and fight) with the rest of the world with the hope that we may be able to help another family. It wasn't a decision that I took lightly and I knew once I opened up the topic, that there was a strong possibility that migraine education might be my new cause. It may well be.
Over 37 million people in the United States suffer from migraines. It's one of the leading causes of disability and according to our neurologist, it's the #1 reason why children become disabled. That being said, it's also hard to diagnose, control and manage in children.
Initially, our daughter never complained of headaches. Born with severe GERD, her stomach always hurt, so when she was still complaining in grade school, we were convinced it was a GI issue. When she was eleven, we had another battery of blood tests done and had her scoped to get to the root of the problem. Strangely, there wasn't one so we were referred to the stomach pain clinic at our local children's hospital (which I thought was crazy that there'd be a place for kids to go when the doctors know they're in pain, but can't figure out the problem).
That's when I finally made the connection between her tummy and her head. Lots of times Rosie would vomit and then follow it up with a “my head hurts too.” I mentioned this to our gastroenterologist along with the fact that migraines run in both sides of our family and we got an immediate appointment with neurology.
Why am I telling you this? As mothers, we are the best indicator of what's going on with our kids. If I hadn't been engaged, I would never have put two and two together. We would never have known what was wrong and begun treatment. So, here's my advice, if your child complains of pain, any pain on a consistent basis, listen.
We are three years into attempting to manage our migraines. We've tried lots of medications. One worked but made my child suicidal. Another gave her terrible diarrhea. The one we're on now, seems to be working at a higher dose but it doesn't control the headaches all the time. When she has one, she has to take a cocktail of four medications to block all the pain receptors because we're not really sure which one works. And, we're not really certain what triggers her headaches.
We do know that stress is a major issue. So, we're learning Biofeedback so Rosie can better manage her pain. We also see two chiropractors (both have different techniques) and a massage therapist to make sure that tight muscles and misalignment aren't contributing. We'll be spending some quality time with our neurologist and a pain psychiatrist this summer in the headache pain clinic one-on-on-one which we're hoping helps. But, what would really help her (besides a cure), is more awareness about migraines.
For nearly two years, we tried to quietly treat her migraines to protect her privacy. However, at the end of this year, we made the decision to speak about them to her teachers, counselors and friends. After a year full of bullying, migraines and falling behind I was seriously contemplating home schooling. Our neurologist wants us to keep her in school because it's less stigma for a migraine patient. She feels that it's better for the school to make accommodations for Rosie. She's also working with our school district to come up with a migraine awareness program and she was looking for a child to be a case study. Rosie will be helping her.
No longer do I call school and say “my child is sick.” She's not. She has a migraine. And, yes, that makes her different from all her friends (which sucks in middle school), but it's the reality. If we're comfortable discussing migraines, then hopefully it will be a comfortable topic for those around us. That's our hope.
How can you help? June is Migraine and Headache Awareness month. If you suffer from migraines or a headache disorder, the National Headache Foundation wants to hear from you. They'd love to have you submit a photograph of one of your favorite places in your city, when you are migraine-free, withe the Migraine and Headache Awareness month sign. You can email your photo to the NHF at email@example.com or post it on the NHF Facebook page. Also, if you're on twitter, please talk about awareness using #MHAM.
We'll be taking our picture this week (we just have to come up with a favorite spot). Won't you join us?