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hEalthLiving by thenumbersMy life with migrainesTExT: AnOnYMOuSAfter hearing that I had spent five days in hospitalfor an intravenous drug treatment to stop a 17day migraine, Steven Parker, Director of TheCenter, asked me to write an article about livingwith migraines. At first I was hesitant, not wanting to openmyself up in that way, but then after thinking it over andcommiserating with a fellow migraine sufferer, I decided todo it. Living with migraines, or any chronic pain for thatmatter, can be a wearing and isolating experience, and ifthrough reading this article someone thinks she gets me, sheunderstands what I’m going through, then it will be worth it.I was diagnosed with migraines at the age of 6, havinginherited them from my dad. They have progressivelybecome worse through the years until my current diagnosis:Chronic intractable migraines. The chronic part meansthat I have them often. Intractable means that they last along time — ranging from a few days, to my longest one,which occurred two years ago and lasted 42 days. As youcan imagine, the 42 day migraine spurred me into action tomake it stop! What I’ve come to realize, however, is thatit’s not so much make it stop as make it work. I can assureyou that it’s a fine line to follow and a hard lesson.Two years ago, my first step was to admit that I couldn’tjust ignore the migraines and hope they went away. Ineeded to be proactive. I had been to neurologists in thepast that had advised me to go on preventative medication,but had been resistant to the idea. After deciding that nowwas the time to take that step, I found a neurologist whoput me on a daily cocktail of four different preventativemedications. She also gave me a drug combination to takewhen I get severe migraines. I meet with her every monthwithout fail. During those meetings, she checks over thedaily tracking form she has me fill out on my migrainestatus, which ranks each morning, afternoon, and nightfrom 0 to 3, depending on severity. Based on that form,she adjusts my medication in response to the frequencyof the migraines during the month, and talks to me aboutalternative treatments.When I first started paying serious attention to mymigraines, I gathered information from the Internet andbooks in an effort to learn how to function better. Oneof the books I found was called The Migraine Brain byCarolyn Berstein. In it, Berstein suggests finding yourtriggers. I started to log everything — what I ate, howmuch I slept, what the weather was like, anything I couldthink of. I found out that I have a lot of triggers: such as adrop in barometric pressure, eating MSG, spending a lot oftime in a room with a lit scented candle, sleeping poorly orbeing around loud noises... The list goes on and on. Findingtriggers is an ongoing process. Even after two years, I’mstill discovering them. What is most frustrating are the dayswhen I get a migraine and I have no idea what caused it.So, how do I live my life daily with migraines? By thenumbers. On the rare ‘zero’ days I celebrate and takeadvantage of life. I’ll open the shades and light a scentedcandle. Or wear perfume and turn on my music loud andapologize to the neighbors later. I might go out to a noisyrestaurant and actually eat there instead of taking food outto eat at home, where there’s minimal noise, smell, and light.Or see a movie in the theater. On ‘level one’ days, I domy best to ignore the slight migraine, but my face changesslightly and my neck tenses. I draw the shades and wearsunglasses outside even if it’s overcast because I’m sensitiveto light. I spend as little time as possible in noisy situations.Other than being more aware and avoiding stimulation,on level one days, I can still function relatively well in theoutside world. On ‘level two’ days, the migraine intensifiesto a full ‘headache face,’ stiff neck making it hard to turnmy head, and knots down my back. These days, I limit mymovements, stay as quiet as possible, and keep the lightson low, with the shades drawn, maybe taking a painkillerdepending on what I have to do during the day. But mostof the time I still try to function adaptively in a version ofnormal in the outside world. On level one and two days Itry especially hard to avoid known triggers as they can takea one or two and blow it to a ‘three’ pretty quickly. Onlevel three days life shuts down and I retreat to my ‘cave’ —my bedroom with the blackout curtains. I usually have toput a heating pad down my neck, back and shoulder and layin the dark, waiting for my time to rejoin the world.Like anyone with chronic pain, I have days whereacceptance of migraines in my life isn’t as easy as others.After two years of concentrated efforts and still havingmigraines at least 3-4 times a week, I have times where I getfrustrated and fed up. I get tired of living a version of lifethat’s not conventionally considered normal — one that’sspent avoiding loud noises and smells — living carefullyand avoiding triggers. The majority of the time though,I try to incorporate my migraines into my life instead ofhaving them rule my life. I make a version of my life that’snormal with migraines. I make it work.Above all, I’ve hung on to hope that it won’t be like thisforever. At my last monthly appointment, the neurologisttalked to me about a Botox treatment for migraines.Maybe I’ll give it a try? I wouldn’t mind getting rid of afew wrinkles at the same time as a few headaches! Thissummer I plan on going to a headache clinic in the Statesand can’t wait to learn more there. In the meantime,however, I’m living my life day-by-day, by the numbers,praying that today will be a zero day.This article was written anonymously. If you are someone who suffers with chronic pain, please call The Center toschedule an appointment with a counsellor.28march 2012 www.communitycenter.org.tw