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Wednesday, October 19, 2011

A Day of Mourning: A Migraine Anniversary

The summer of 2009 seems particularly golden in my memory, but for good reason. With three years of difficult medication withdrawal finally behind me, I found myself in the best physical and mental health I'd been in my entire life. At long last, I was completely free of the suffocating bipolar II depression that had burdened me since I was ten. The general and social anxiety that had been eating me alive for even longer than that was gone, too. During the years when I was on Geodon, the slightest bit of physical activity could make me horribly sick for days, but with the Geodon completely totally out of my system at last, I found myself well enough to take the dog on several vigorous three- to four-mile walks every week and I'd started swimming laps, too. I'd voluntarily cut my hours at the flower shop when the economy tanked since I was the only employee who had no rent or mortgage to pay, so I spent my time exploring grad school options, photographing and writing a children's book, going to matinee plays, and exercising with the dog. It was a particularly hot summer and so to keep cool, Abbey and I had gotten into the habit of hiking in the various wonderful wooded parks that can be found around my suburban Seattle home. I'd never felt so great in my life. I even bought my very first car! I was incredibly excited about my future. During the past six and a half years, as I struggled first to get my bipolar II under control and then to get off the psychiatric medication Geodon, I'd had to abandon the idea of making future plans. There were so many unexpected twists and turns, especially with the medication withdrawal, where every time I made progress, some new monstrous side effect would rear its ugly head. I learned to be patient, to simply exist in the moment. But finally, finally I could chose how I wanted my life to look from here on out. I decided that acquiring some graphic design skills would be a definite asset to whatever creative shape my life's work might take, so I enrolled in classes in Adobe Photoshop, Illustrator, and Flash at the nearby technical college. I really enjoyed the work. For the first time since 2003, when my life was virtually shut down when I lost all control of the bipolar II depression that I had coped with for so long, I was finally engaging every single part of my brain. It felt absolutely amazing.

On Monday, October 19th, 2009, around five in the afternoon, I was sitting on the couch in our family room doing some reading for my Flash class. The last week had been unusually stressful; I'd had 35 hours of work at the flower shop and projects due in three different classes. I'd submitted the last of those projects earlier in the day and I finally had a little breathing room. As I read, I realized that, out of nowhere, my mood had plummeted. I remember looking up from my book and quizzically examining this unexplained depression. Was my blood sugar low? Had I missed a medication dose? Was I overtired? I couldn't pinpoint the reason, so I chalked it up to some strange metabolic fluctuation and went back to my reading.

Fifteen minutes later, the migraine began.

It had been a while since I'd had a migraine; other than one a few months before, I'd been migraine-free for three years after switching to continuous birth control pills, thereby eliminating the menstrual cycle that had been my sole trigger since the migraines began in 2002. There is no mistaking a migraine, though, and I took my Migranal nasal spray right away. I realized that the mood drop had been a prodromal, or pre-migraine, symptom, and was glad to have that little mystery cleared up. But what didn't clear up was the migraine. Two years later, the migraines remain.

I'd already had a difficult time with the migraines and had been ecstatic when switching to continuous birth control pills had ceased their attacks. I had my first migraine in July of 2002. Between then and 2006, I'd never gained much control over them. Triptan drugs, such as Imitrex, were relatively new at the time and had changed the life of many a migraineur for the better, but they never did a thing for me and I eventually tried eight or nine of them. The migraines were always the same: three days of haunting pain on both sides of my head, accompanied by nausea, light sensitivity, and noise sensitivity. I eventually found that DHE (ergotamine), as an injection or a nasal spray, was somewhat more effective, and sometimes receiving anti-inflammatory injections several days in a row could break a headache. As the Geodon withdrawal worsened, though, so did the migraines. Although the pain was somewhat less, three-day migraines were a thing of the past; I now had migraines that lasted nine days, fourteen days, or more. It was after I had a migraine that lasted for four weeks despite several days spent in the hospital infusion room receiving IV steroids that my neurologist suggested the switch to continuous birth control pills that proved so effective for the next three years. I sometimes had so-called ice pick headaches, little migraines that lasted for only a second or two, and I noticed they increased if I ate chocolate, so I gave up chocolate and otherwise did just fine on the headache front.

So what caused the migraines to start again and to never go away? The migraine I'd had back in August I'd chalked up to a combination of antibiotics decreasing the effectiveness of the birth control pills, a snack of dark chocolate, and the letdown (a fairly common migraine trigger) relief of an emotionally charged reunion. It lasted for about six weeks, once again impervious to treatment, including IV steroids, but it hadn't been too severe, not like the old migraines, and it seemed unlikely that those circumstances would ever happen again. So what happened on October 19th, 2009? The best explanation that my neurologist and I can come up with is that the initial triggers may have been the increased visual and intellectual stimulation of my graphic design studies plus the letdown after my busy week, but the fact that the migraines have never gone away, despite the cessation of all potential triggers for months following the onset, may very well be the work of my old nemesis, Geodon. Geodon has the nasty habit of rewiring the brain during withdrawal and my withdrawal had been far more awful and prolonged than most. There's no way of proving this theory, of course. And add to that the fact that this is exactly the kind of thing my brain WOULD do.

There's simply no getting around the fact that I have an extraordinary brain. How is it extraordinary? Well, it is incredibly sensitive to EVERYTHING. I've had a sensory processing disorder since birth that has gotten progressively worse (which is unusual) as I've gotten older. In essence, every single one of my five senses is way more sensitive than the average person's. For many years, other than in the realm of touch, it was to my advantage to see or hear as much as 75% more than other people. It helped make me a great writer, artist, and employee, for example. The chemistry of my brain proved to be incredibly sensitive, too. Bipolar II is the result of chemical imbalance; I would discover that correcting for this imbalance with various psychiatric drugs, including Geodon, proved to be a tricky business. I was prone to never-before-reported or unusually severe side effects when adjusting my medications by even the tiniest amount. (This is why it took me three years to withdraw from Geodon, versus one week, which is more typical.) I was sensitive to hormonal changes, too, which played a role in my migraines, my sensory sensitivity, and my bipolar II in addition to making my life more or less a living hell from the onset of menstruation at the age of eleven. Add to all this the fact that I'm incredibly creative and unusually intelligent. I have a brain that is far more active than the average person's, far more connected, takes in far more information, and is far more sensitive to every imaginable stimuli. This is what makes me a talented photography, artist, and writer, it helps me be both funny and wise, and it's also the recipe for a migraine disaster.

The chemical workings of migraines are not fully understood, but a migraine is, in simplest terms, an inappropriate reaction by the brain to ordinary stimuli. As with any type of defensive sensitivity, such as allergies, it can morph into a downward spiral: the first reaction makes the brain more sensitive, causing further reactions, causing the brain to be even more sensitive, making things worse still. My brain is essentially stuck in a loop of heightened sensitivity where virtually every type of sensory stimuli, but particularly visual and aural ones, is interpreted by the brain as an attack, resulting in more migraines. My body is locked in a permanent flight state; since the migraines started, my heart rate has seldom dropped below 90 beats per minute. It's a painful and exhausting and unfortunately, I've found only a modicum of relief from medication (which has been problematic for the usual reasons), acupuncture, and physical therapy, among other treatments. The single best way to keep the migraines at a manageable level is to avoid as much stimuli as possible. Being able to use the computer, which allows me to find happiness through working on digital photography and tethers me, thanks to social networks, to the outside world, is important, despite the fact that looking at a lit screen is a major trigger. I have a number of ways of reducing the impact of the screen on my brain, and one of them is limiting my exposure to just about everything else.

Despite the incredible smallness of my world created by my necessary isolation from almost everything, I find many reasons on a daily basis to be happy. The Geodon withdrawal years were great training for this, as was the excellent dialectical behavior therapy I received while working on my anxiety and depression. How I have become so skilled at finding satisfaction in my situation that I actually find it difficult to be unhappy is the subject for a different post; today, I am here to recognize what I've lost.

One of the things I miss the most? Being able to wear stylish clothes.

I've always enjoyed clothes, even during the years when my desire to dress well conflicted with my anxiety of being looked at, but from around 2005 or so, when my anxiety decreased, I really loved getting dressed up. I wore jeans and fleeces for my job at the flower shop, so on days when I went to get my hair cut or see my psychiatrist or my therapist, all located within blocks of each other right in the heart of downtown Seattle, I'd get all gussied up and take myself out to lunch at a nice restaurant and stroll through Nordstrom's to see what was new. I was such a regular there that they knew me by name! I saved most of what I earned, but clothes were one thing I spent money on. I have a particularly weakness for snazzy coats! Even when I was working less in 2009 and stopped taking myself out for nice lunches and buying new outfits on a regular basis, I still loved getting dressed up. I wear clothes well, being of a tall, slender build and I have a naturally dramatic look, with my short dark hair, fair skin, and large eyes. It was fairly common for me to be stopped in the streets by strangers who wanted to tell me I was beautiful.

Looking at me today, you would be unlikely to say, as many did in the past, that I should be a model. I wear a uniform of sweatpants and sweatshirts and a few funky T-shirts. Unless I'm leaving the house, I let my hair do whatever wacky bed-head thing it was doing when I got out of bed. I'd estimate that I actually style my hair with products fewer than half a dozen times per year; in the past, it was one of the first things I did every morning. I still clean up nice when I have a reason to clean up (Christmas dinner, for example), but it's exhausting now to even wear jeans, much less heels or makeup or anything less comfy than a T-shirt. Let me repeat that: it makes me physically tired to wear jeans. That is what my life has become. Just before the migraines started, I bought a pair of fabulous slouchy gray suede boots; I had to return them unworn. There's no point in buying nice clothes anymore because I am unable to wear them. Slouchy gray sweatpants? Yes. Jackets and shoes and cool tops? No. I miss that so much.

I also really miss being able to walk the dog. I've never been a particularly physically active person, between having short hamstrings since birth and inflamed growth plates in my feet while I was a kid and then the exercise-induced asthma and the weird exercise-makes-me-horribly-ill problem during the Geodon years, but walking a dog is such a nice thing to do. I was really getting into training her up and was even in the process of vetting potential dog companions to start going on walks with us so that she could build up her dog-dog social skills.  I've managed to walk her a few times now with Mr. Gorgeous, the collie, since the migraines started, but it's an exceptionally exhausting activity and often beyond my abilities. I miss walking with her in the woods and walking just around the neighborhood. It makes her so happy to go on a walk and it made me happy to make her so happy. I was also enjoying building up my strength and stamina. That's all gone now. Every few months or so I'm up for taking Abbey on a short walk, but it's hard work. Fortunately, she's a naturally low energy dog, so not going on walks hasn't impacted her behavior, but I miss being able to do that with her and for her.

Another thing that's hard about being so disabled by the migraines is my inability to leave that house at will. I COULD leave the house, but so often it isn't worth it. I only had my car for a month and a half before I had to give up driving it almost altogether. I may go months without driving. Sometimes I feel like my medication has slowed my reaction time too much for it to be safe for me to be behind the wheel, but most of the time I don't drive because it's simply too demanding. If you're accustomed to driving all the time, there are all kinds of behaviors and decisions you make that have become automatic, but you are actually processing an incredible amount of information. For me, none of that information goes into the background. Having to pay so much attention to everything around you is exhausting, especially since all of it is MOVING. Being a passenger is hard work, too, because of all the moving, flickering light and the endless, overwhelming visual information of passing scenery. As a result, most often I only leave the house for medical appointments. It's just not worth it. That means even simple errands must go undone or be delegated to others. It's sad, too, because as a family, we always liked to go on evening drives for a little treat. I particularly liked doing the so-called Two Bridges tour at sunset, a 33-mile round-trip route that involved driving on both of the floating bridges that cross Lake Washington. If I'm not feeling well, especially if I seem a little depressed, my parents will offer to take me on a drive, but being out, especially when the sun is setting or after dark, when headlights and streetlights turn on, simply makes the headaches worse. In not being able to leave the house, I've lost not just a convenience, but a pleasure.

I've always been an introvert, thankfully, so not being able to see friends on a regular basis isn't hard, but it saddens me when a good friend visits from out-of-town and I'm not well enough to see them, or when I have to cut short my appearances at holiday dinners or other parties because the stress of being social has drained my tiny reserve of energy. Talking is tiring. Laughing is tiring. Being in surroundings where multiple conversations are going on at once is tiring. I find the world beyond my house, where there is so much noise and so much visual information, to be exhausting. Socializing is just too hard.

I miss being able to travel. I miss going to movies and plays or even being able to watch some of my favorite movies at home. I miss being able to listen to music. And I miss reading.

One of the things that I really miss, right up there with being able to wear fun clothes, is reading the New Yorker. Back when I was working at the flower shop, for several years I was on a schedule of working Tuesday, Thursday, Friday, and Saturday. (We worked ten hours days, allowing for three days off each week.) Sundays were spent with my family, Wednesdays were frequently spent in downtown Seattle, dressed to the nines, but Mondays were reserved for reading the New Yorker from cover to cover. The latest New Yorker would arrive on Friday, so when I had the house to myself on Monday morning, I'd curl up on the couch and read the magazine straight through, every single article, a process that took me until about 3:30 in the afternoon. I loved the complexity of the prose (though I did have a game called "Hunt the Palimpsest," since "palimpsest," a word seldom used in conversation, tended to turn up somewhere in almost every issue) and the complexity of the ideas. I considered it my duty as a citizen of both this country and the world to be well-informed and so was in the habit of thoroughly reading the newspaper as well, including boring-sounding articles, but the New Yorker was a more of an indulgence, despite the wealth of information it might contain. I've always been a prodigious reader, the sort that was actually glad to sit on the runway at O'Hare for an extra hour during a cross-country trip from Seattle to New York City because it gave me more time to read War and Peace, and I always was reading several books at a time from the genre known as literary fiction (as well as anything with writing on it that happened to be in front of me), but the New Yorker was a special weekly treat. When the migraines started, I had to give it up. The print was too small, for one. But also it became too hard to think about the ideas. It tired me to read that convoluted prose and I just didn't have the intellectual stamina anymore to keep up with an in-depth article. I've had to give up a lot of my reading, not just the New Yorker. I skim the paper now. I'm more likely to be reading young adult novels than literary fiction these days. The print is larger, the ideas are simpler, the vocabulary is smaller: those are my current standards for reading. I was the kind of reader who was tackling The Brothers Karamazov for pleasure at the age of 15, who always had a thing for 19th-century Russian literature and didn't bother to take classes on 19th-century British novels in college because I'd already read all the books on the syllabus; now, at the age of 30, I'm back to reading the books I put aside when I was 10.

In addition to things that I used to do that I can't do any more, there are things that I'm unlikely to be able to do in the future because of the migraines.

Writing is one of them. I've written this long post, obviously, but that's not the kind of writing I'm talking about (though I frequently go through periods where this sort of thing is absolutely beyond my capabilities as well). I'm talking about creative writing. Even before I knew how to write, I was a teller of stories. Since the age of six, when I at last had the necessary skills to put my thoughts on paper, it was my firm belief that I would be a writer when I grew up. Over the years, I won a number of writing awards, including on the national level, and every single creative writer teacher I've ever had considered me to be one of the most talented students they'd ever had the pleasure of teaching. I had decided to commit to being a writer after I graduated from college and was in a MFA writing program when my mental health collapsed in 2003. During the Geodon years, my mind was too cloudy to write much of the time (creative writing requires a clarity of thinking and articulation far beyond what is required to write an email or even a blog post), but during that golden summer of 2009, I was ready to take a story I had been working on for years to the next level and turn it into a novel. I was seriously engaged in doing the formal research that would be necessary to flesh out the story. There I was, doing the groundwork for A NOVEL. That's a momentous step for a writer. And then the migraines began, my thinking clouded once again, my basic ability to articulate often faltered, and the verbal branch of my creativity sank into dormancy. Maybe things will change, but it's hard to imagine my mind become nimble enough to write fiction as long as the migraines last. Also, there's the practical aspect of not being able to tolerate looking at black text on a white background of any kind for very long. I still think about the plot of my novel and perhaps it will eventually get written, but there's no guarantee. For nearly twenty-five years, being a writer was part of my identity; there days, I'm just a migraineur.

I do have some concerns about ever living independently; it's not easy to be 30 and to know that your best bet for succeeding on your own is to live in subsidized housing for seniors. (Most also allow people with disabilities and have the advantage of providing transportation to grocery stores, etc.) But what saddens me more is the fact that I'm likely to spend my life alone.

Thankfully, I was deeply ambivalent on the subject of having children long before it became absolutely essential from a medical standpoint that I do not. I was, however, looking forward to spending my life with someone. I had no doubt that I would eventually find a man with whom I would like to share the rest of my life. I was particularly looking forward to being in a relationship, at long last, as an individual without significant anxiety issues! I know of people with chronic fatigue syndrome, fibromyalgia, and other debilitating disabilities who have found love, but it's just so hard for me to imagine such a thing happening for me. Who, honestly, would want to spend all of their time with someone who needs so much care, who can't do any of the shopping, the cleaning, the cooking, or other domestic activities, who can't go to movies or shows or sporting events or virtually anywhere out in public, who can't tolerate seeing friends or going to parties or even having the radio on around the house, whose needs and limitations must always take precedence? I'm a likable person, but I just can't see all that work being worth someone's while. There'd be no PARTNERSHIP. Oh, and thanks to medication side effects, it'd have to be platonic relationship, too. On the off chance that there is some guy out there, who, in addition to being the sort of person I would like to have around, is prepared to devote his life to taking care of me, how on earth would I connect with him? The internet, presumably, is how you might find such a person, but how would I get to know him well enough to throw my life into his hands when I can barely tolerate spending time in the company of my closest family members? Maybe things will change, maybe I'll get better, but the cold hard truth is that it's extremely unlikely that I'll ever be able to marry or enter into some similar sort of domestic partnership and that's just depressing.

It simply has to be said: a truly terrible thing has happened to me. Oh, I make do alright, I'm a champion when it comes to coping, I'm great at living in the moment and finding happiness within my limitations, but that doesn't change the fact that being afflicted and disabled by chronic migraines is an awful way to have to live. After I post this, I'll take a long hot shower in the dark to help quiet my overstimulated migraine brain and then I'll go back to enjoying my dog and my camera and my family and living to the best of my ability. The summer of 2009, that particular golden era of my life that ended around five o'clock two years ago today, is gone. I've lost a lot. But my life is now and my art is calling and I keep on moving forward.


  1. I too get debilitating migraines -- for forever. You do end up missing out on a lot, and nothing works every time to fix it or even make it bearable. I am very very grateful when the last one goes away and I can return to some form of normal until the next one explodes. Thinking happy thoughts for both of us ....