Wednesday, August 26, 2009

The Ugly Existence of a Migraine Sufferer

I’ve had migraine headaches for, well, as long as I can remember. I was diagnosed as a child and never quite understood how misunderstood migraine headaches could be for those who aren’t sufferers. So for those of you who don’t understand the debilitating effects of these headaches, here is a look into the window of my life.
My childhood was littered with the memories shared by most kids, flashlight tag and swimming at the neighbor’s house, catching fireflies in the summertime, and many trips to grandma’s on the weekend. In my childhood, though, I can pick out of a pile the exact sheet my mom used to lay on the couch for me when I was sick, and the exact trash can that sat next to me. I can pinpoint the smell of that trashcan. It smelled like dryer sheets, and can distinctly remember how nauseated it often made me. I have the vivid memory of cold wash rags pushed into my eyeballs like a mask, and the swishing of the fan overhead. My poor parents, as if it wasn’t enough to see their child in such pain, were confined to the kitchen for most of my childhood, where they watched tv in virtual silence in between checking to make sure my rag was still cold enough.
I can remember nights when I would cry, half because the pain was so horrible, and half because I was frustrated at what my life had become. I look back now and can’t imagine how much of my childhood I missed due to these headaches.
In kindergarden my doctor okayed the change from children’s Tylenol to adult extra strength Tylenol every four hours, which never helped the pain.
In the first grade I underwent my first ct scan to check for brain tumors. I would have eight more before the age of 9.
During the 2nd grade I was referred to an ENT. I had also had many sinus infections in my life and one particular test showed my sinuses miserably blocked. The day after my eighth birthday I underwent sinus surgery in hopes of relief. Though my sinus infections dramatically decreased, the headaches did not. A straight A student, I was almost held back my 2nd grade year because I had missed so many days of school. Which led to the “play it right” game of 3rd grade.
In third grade I had a miracle teacher. Her room was empty in the afternoons, and she just happened to have a room in the middle of the building, which meant no windows. In order to assure my “graduation” from 3rd grade, she would lay out a pallet in a corner, get me a cold rag for my head, and let me lay down on the days I had headaches until 2:30 rolled around and I could be counted as being there for an entire day of school.
During these years it was normal for me to have headaches 4 – 5 times a week. 3-4 of these headaches would often require my sleeping them off, and just as many would result in nausea and vomiting, which we later found out made a dramatic difference in the health of my teeth.
In the 4th grade I was referred to a neurologist at a children’s hospital in St. Louis. After several appointments I was finally diagnosed with migraine headaches at the age of 10. My mother began a 3 month journal tracking every food I ate, looking for foods that would trigger my migraines. Imagine her joy when she had the privilege of telling her 10 year old that she could no longer have chocolate or anything with caffeine in it. Beautiful. The diagnoses also led to a daily prescription medication, Inderol, and prescription pain medication, midrin, and three visits a week, for 6 weeks, to a therapist to undergo biofeedback. The exercises I learned there helped, but my most valuable information gained was learning what it felt like when a headache was coming on. If I caught them early enough it seemed I could beat them completely, with no sleeping and no vomiting (which often made my head feel a little better.)
The hopes by all of my doctors was that, like most children diagnosed, I would begin to grow out of these headaches as I got older, which for me, is exactly what happened.
In the 8th grade they began to wean me off of the inderol, and by my Junior year of high school I was able to beat my migraine headaches with an over the counter migraine medicine.
As I graduated high school and for several years following, the 4-5 headaches a week gradually became 3-4 headaches a month, and only 8-10 a year that resulted in the vomiting and required me to sleep them off. I finally felt like I was winning... I had gained my life back, or possibly, I had gained a life I had never really been able to experience.
Still now, though, I’m plagued by bouts of these headaches, just as bad as I once remember. Sometimes the bouts last a few weeks, sometimes a few months, and the one I’m currently fighting seems to be longer.
Now I’m back to the game I’ve played all of my life. What will work this time? Migraines seem so easily diagnosed, but so impossibly treated. Nothing ever works forever. Eventually medicines stop working and something that has never worked before does. Sometimes it is a trip to the ER... sometimes it’s a cold room and an hour of quiet.
For me, now, the pain is different than ever before, which opens a whole new chapter of trying to figure out the relief. My over the counter drug no longer works, and sleeping it off is now not only an option (due to my duties as a mother), but also has a counter effect and makes my headaches worse. The door has now opened to night guards and more prescription medication, chiropractic visits, massages, and possibly even surgery if we so believe it would be a permanent solution.
And here I sit, another stage in my life where the wonderful memories of life, now my son’s childhood, will be littered with more cold patches for my head, bottle after bottle of Excedrin, and more vomiting than I’ve done since my childhood. Looking back I wonder what I missed out on in my own childhood with headaches so debilitating that I was forced to sleep through most of it. I refuse for my memories of my son’s childhood to be clouded by the same fog. It’s time to find relief.
Many people, thankfully, will never personally understand the physical pain that a migraine sufferer experiences, but many will also never understand how a headache can so greatly impact an individual’s life. That’s why I felt this was so important. As a 24 year old mother and wife I have endured the pain for nearly two decades now. It is most certainly the thorn in my side, and I’m out to give a voice to those who are suffering.

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