THERE IS ALWAYS HOPE
Almost five decades. That’s how long I’ve had migraine disease.
Of course in the early years, it was diagnosed as just a headache, the same kind my mom would get. Oh yeah, and the same kind my grandmother got. But they were just headaches.
It wasn’t until about 15 years later that they were diagnosed as migraine. I’m not sure it mattered much, since there wasn’t anything to prescribe for them other than the same pain killers I had been getting. But nonetheless, it was good to actually have a diagnosis.
Since that time, I’ve moved to various states east of the Mississippi, following my husband’s career. It was while we were living in Philadelphia in 1991 that sumatriptan was approved for migraine. Imitrex, the brand name, was only available then by injection but sounded promising.
My physician was not convinced of the safety of this new drug, claiming it was linked to heart attack, and would not prescribe it.
A couple years later we made our next move to Atlanta, and my neurologist there was enthusiastic about sumatriptan. So was I, especially after we tried it in his office during one of my migraines. About 20 minutes after the injection my migraine pain was gone. Gone!
Since then we’ve moved a few more times, and I’ve been through a few more neurologists. Some were better than others, but as my migraines became chronic, all any of them thought to do was prescribe more drugs. Stronger drugs. Drugs with scary side effects. And drugs that made me trudge through my days like I was wading through mud.
And then I stumbled upon my current neurologist. He was the first one in a long stream of physicians that suggested some alternate therapies. Supplements. Cranial sacral therapy. Acupuncture. Physical therapy. Nerve blocks. Sphenopalatine Ganglion Blocks. Radio Frequency Ablation. OnabotulinumtoxinA …
Lots of hope!!
I learned about migraine disease, and I learned about my brain. I learned that many of these treatments did not help my chronic migraine, but I was also taught that there is always something else to try.
There is always hope!
Like so many people with migraine disease, I felt the guilt of not being able to “fully” live my life, to be the wife, mother, employee, friend that I thought I should be. I felt isolated. That’s when I began doing my own research. That’s when I found my migraine community, along with a wealth of information and support. I started out with a group on Facebook. Then I signed up for some newsletters. I asked my doctor more questions, began my migraine diary, and tried to learn my food triggers. (Triggers? Who knew I could control some of them?!?) All of a sudden, I couldn’t get enough information. I learned how to judge the legitimacy of articles and so-called “cures.” I began using things like essential oils to get some relief. And I developed these kick-ass charts I took to my doctor each visit that documented my migraines. We discovered patterns and gleaned important information about what did and didn’t work for me. In short, I became a migraine nerd.
Wow… “I” this, and “I” that… a lot of “I’s.” Because migraine is an isolating disease. How did I overcome that? By connecting with my fellow migraine warriors and becoming a patient advocate. We attended conferences, we shared our stories and gave each other support and some “tricks of the trade.” We attended Headache on the Hill in Washington DC to educate our Senators and Representatives on the price tag migraine disease has on our economy, and ask for their support in allocating funds for more research for non-addictive pain treatments. We read and wrote blogs. We marched in Miles for Migraine. We made friends. We made a community that won’t stop supporting and advocating for each other.
My migraine journey has taken me down some dark roads and through precarious tunnels. But every time there was a light at the end. When language processing became one of my prominent prodromes, I had to concede that I could no longer be a sign language interpreter for deaf students. But at the same time, my husband and I had an opportunity to start our own small business, which gives me the flexibility I need to work around my migraines. Guilt manages to invade me whenever I see one of my daughters suffering from migraine. But there are promising new treatments just ahead of us. And when I do succumb to the depression that so often accompanies migraine disease, I know where to turn for the support I need.
Of course there are times when despair threatens to engulf me. But I never let it win.
Because there is always hope.