My mission for today's entry is this:
If you could invite someone (any living person) to your home for tea
for the purpose of explaining Migraine disease to them so they would
truly understand it, who would it be and why?
This is an easy one. I would invite the professor who blocked my efforts toward successfully defending my PhD dissertation.
I began my journey with chronic migraine in November of 2006, shortly after presenting my dissertation proposal to my committee of 4 professors. Between the cognitive effects of the migraine and the side effects from the preventive medicines I was taking, doing research and writing a dissertation was very difficult. But I did the best I could, working when I felt able, poring over the mountains of data, citations in the literature, and trying my hardest to present a cogent thesis. It took me 2 years to complete rather than the 6 months I had originally intended. I communicated with my committee at every turn, but She-Who-Will-Not-Be-Named (SWWNBN) was not just unsympathetic. It seemed as if she simply dug her heels in harder, and became even more combative. While it wasn't the best paper I'd written, it was 248 pages of blood, sweat, and more than a few tears. On more than one occasion, SWWNBN argued that I should have done Y instead of X, but when I reviewed the transcripts of the audio recordings of our meetings, I did exactly as she originally requested. She played many other mind games, like being 45 minutes late for the defense, then telling me that her 12 year old daughter could have written a better paper. Hers was the vote that sunk my battleship. I worked for 8 long years toward my PhD. My GPA was 3.9. I earned the degree; I just can't put it on my resume'.
Migraine is an invisible disease. Even though I don't "look sick," I certainly am debilitated. I used to think that I wouldn't wish a migraine on anyone. But in the case of my mystery guest, I wish I had a voodoo doll and could poke her in the head for an hour or so, just so she'd get a little taste of what it's been like for me.
Here's what our meeting would sound like:
Hello, Professor. Thank you for joining me for tea. Would you like sugar? It certainly seems as if you could use it. Or are lemons more to your liking?
I'd like to tell you about my experience with migraine. Contrary to what you might believe, it's more than just a "headache." It is not some lame excuse people use to skip out on their responsibilities. It's not something that frail women fall back on to get attention. Most migraineurs I know would much rather be living healthy, productive lives than laying in bed in a dark room with earplugs in their ears and an ice pack on their heads. This was my daily routine while I heroically tried to write my dissertation.
You see, migraine is more than just a neurological disease. It is a systemic affliction that impacts my vision, hearing, sense of smell, gastric function, balance, and proprioception. Although stress can be a trigger, that was not the cause of my disease. I have the genes from my paternal grandmother and my mom to thank for that.
During the course of treatment, my mission was three-fold: To discover my migraine triggers, to learn how to cope with the pain and disability through self-hypnosis and cognitive behavioral therapy, and to find a preventive medicine that would ameliorate the symptoms.
My most reliable triggers are alcohol, smoke,
flashing lights, loud noises, and lack of sleep. Unfortunately,
reading for more than 30 minutes is also a trigger. No wonder I had so
much trouble while working on the dissertation, eh?
The meds used for migraine prevention must be able to cross the
blood-brain barrier. That means that the most of the meds I've tried were developed for diseases
other than migraine, such as epilepsy and psychosis. At last count, I've tried over 50 different medicines to prevent, abort, or rescue me from the pain. I have experienced negative side effects for nearly each one of these medicines - including gastritis, constipation, diarrhea, nausea, vomiting, heartburn, overwhelming fatigue, somnolence, insomnia, numbness and tingling in the extremities, weight loss, weight gain, anxiety, apathy, lethargy, depression, mania, auditory hallucinations, suicidal thoughts, feeling disconnected (like I was watching my life on TV), itching, rash, hypertension, hypotension, dizziness, peripheral edema, hair loss, tremor, blurred and double vision, tinnitus, short term memory loss, cognitive impairment (I couldn't add, remember a phone number or do a Google search - even though before the chronic migraines, I created a pamphlet to help people learn how to do a Google search), aphasia, poor motor function and reflexes, inability to drive a car, no libido, kidney and liver impairment, irreversible thickening of the heart valves, palpitations, chest pain and tightness, and, well, you get the idea. I experienced nearly every one of these side effects at one time or another while doing my research, writing my paper, and during my defense. It's been a constant balancing act between tolerating the side effects of the medications to prevent the attacks and the impact of the migraine itself.
Most people would have just packed it in and quit. I am not a quitter. Persistence is my middle name. I never gave up and never gave in until the clock ran out and the university told me I was done. I felt very defeated for several months, so I guess you accomplished your mission. So much of my identity, my dreams and aspirations during those eight years were cloaked in the vision that I would someday be a college professor.
Now that the experience is behind me, I still feel disappointed at what could have been, but have intellectualized it. Truthfully, there is no way I could maintain a full time job because the migraines are still unpredictable enough that I am impaired at least 7 days a month. Still better than every day, but I certainly would not want to hire me. I have a part time job at a middle school and have taught while in a migraine. I just have to be honest with my students. I say, "How many of you have ever had a headache?" Nearly all hands go up. "How many of you have ever heard of a special kind of headache called a migraine?" Some hands go up. "Have you ever had a migraine?" To my great sadness, a few hands go up. Then I tell them the kind of problem I am having that day. For example, "I need you to be especially quiet because I have super-human hearing today." Or, "I can't read the PowerPoint, so I'll need you to help me with the slides." And the students are great. But I feel like I am doing a sub-par job that day, and hate that my life and livelihood are interrupted by this disease.
You see, not only am I negatively affected by the medicines, but the migraine presents a different set of problems. There are 4 phases to the migraine which can last from a few hours to a few days. Most of the time I was doing my dissertation, I had one migraine after another, repeatedly going from prodrome, to aura, to headache, and to postdrome - over and over, again and again and again. It was endless, agonizing, and totally debilitating. Here's what happens during those 4 phases.
During the prodrome, I might crave carbohydrates, yawn a lot, feel very cranky and irritable, feel exhausted for no apparent reason, and sometimes my vision will get so blurry that I can't read, drive, or watch TV. One time, I remember driving down the road when the prodrome hit. I saw two birds flying in perfect synchronicity. Except it was ONE BIRD. Then there are times that I cannot finish a sentence because I can't come up with the right words. I also have trouble concentrating, even to read something as simple as the comics. One other odd occurrence is that I smell things that aren't there. I used to accuse my husband of having a really acrid-smelling body odor until I realized that nobody else could smell it.
Not all migraineurs have an aura. I have a visual aura about 20% of the time. I call it my "Oh Sh*t" moment. Sometimes it looks like sparks in my field of vision, or a dark spot that is similar to what you would see when watching a film and the film catches fire and melts. It starts out as a dark spot in my field of vision, then turns bright. Other times, I'll see bursts or blobs of light when I close my eyes. It is usually orange, yellow or green, and looks like I am viewing explosions on earth from about 1000 feet in the air, or like a lava lamp with orange (or yellow or green) goo in blackish grey liquid. If it wasn't the harbinger of 3 days of agony, it would actually be pretty.
The headache phase consists of going into medication and hibernation mode. I am in pain and have other neurological and systemic problems. I use a 5 point scale to rate the pain. I start medicating when I get to level 2, and give myself an injection if it gets to level 4. At 4, I have trouble preparing the injection because I am 80% bed-ridden and can barely function. At level 5, I am writhing in bed and can't talk because the pain is so bad; I feel like I will pass out. Fortunately, I have had only two migraines that reached a level 5. The pain starts out as a fullness or heat, usually on the left side of my head in the area enervated by the trigeminal system. It throbs. If it progresses, it feels like someone is shoving a hot poker in the side of my head, or like someone drilled a hole in my skull and has poured acid on my dura mater. However, the headache phase of migraine comprises so much more than head pain. I have trouble reading, everything is super loud, and I am sensitive to light. I can't really hold a conversation. My affect is flat. My husband can immediately tell if I am in a migraine because I look so droopy. I can't smile. I have no sense of humor, and no empathy for others. Often times, I feel like I am freezing cold. I do everything I can to help the pain go away - for example, self-soothing techniques like meditation and self-hypnosis. Because of the memory loss I have when I am in a migraine, I often forget what I did to help myself get better. I have to write it down (if I can function well enough to do something that simple). My family has learned that I am apt to forget important details when I am in the headache phase; I may not remember an entire conversation at all. It's agonizing.
The postdrome phase of the migraine is what I like to call "the hangover." It can last a couple of hours to an entire day. The pain has gone, but I feel distracted, unbalanced, unsteady, and like my IQ has dropped about 30 points during the whole ordeal. Many people say they feel like a zombie. That just about sums it up.
I am not the only person who is negatively affected by the side effects from medicines and from the migraine. My friends and family have also been impacted by this disease. I've bailed out of many social events, family parties, and intimate gatherings. My husband has the patience of Job.
The other members of my dissertation committee understood what I was going through. You did not. I hope now you have a better sense of my life as a migraineur. It's a constant battle with nothing to buoy me but the hope that I will find a medication that will help or that researchers will discover a different treatment (medical or surgical) that will end this roller coaster ride.
Care for a scone?
National Migraine Awareness Month is initiated by the
National Headache Foundation. The Blogger's Challenge is initiated by
www.FightingHeadacheDisorders.com.
