I have chronic daily headaches.
My migraines were diagnosed when I was 9 years old. I don’t remember the first one I had. I have always had what we called “sick headaches.” My head would pound to the point where I couldn’t speak or think, and my stomach would lurch. Then I’d lose everything I’d eaten in the last 24 hours. It might last a few hours, or it might last 3 days. However long it lasted, the hours and days were simply written out of my life.
My migraines came at irregular intervals. I would get three, four, or perhaps five a year. They were manageable with pain medications, which would help me to sleep despite the pain. Without the meds I would lie curled up and moan. Tears, unbidden, would leak from my eyes, which were screwed tightly shut to ward off light. I was prescribed codeine.
When I was in boarding school no drugs were allowed in our rooms. Even aspirin had to be deposited with the school nurse, who was there only from 7 a.m. to 5 p.m. The nurse didn’t believe my headaches were real. She thought I was a druggie teenager seeking narcotics when I asked for my medication, so I kept a bottle of pills in my room and another in my purse. Had they been discovered, I would have been suspended or maybe even expelled. They were the only way I could even partly function when the headaches were their worst, and sometimes even then I couldn’t. I hoarded and guarded those pills. There was no way they were going to be used recreationally. Those pills were more precious than diamonds.
The world often seems brighter, louder, more active, and more intense just before a migraine hits. Sometimes before the pain begins colors suddenly take on an energetic quality, smells become more pungent, and sounds seem louder. Activity around me makes my heart beat faster. I don’t perceive it as a threat, just as too much energy that makes me uncomfortable or edgy. I get irritable. This is my “aura.” I don’t hallucinate. I don’t see anything that isn’t really there, unless the increasing intensity of my senses counts.
Sometimes a migraine hits with no warning at all. I may be calmly walking to my car and be slammed with a 2×4 to the brain. I fumble in my purse for the triptans – drugs that are designed to abort a migraine – knowing that it may be an hour or more before the pills begin to work. Another slam, and I wonder if I can drive my car home. I have to. That’s the only way I can get there. Digging back into my purse I come up with the Vicodin ES my doctor prescribed for pain that isn’t alleviated with the non-narcotic triptans. It still takes an hour before I can drive, and I am thankful I don’t have to drive far. It’s not just for my sake, either.
I call these headaches “Mike Tysons.” With the first sudden blow I am reeling; with the second I am almost unable to move, talk, walk, or look at anything. I curl into a fetal position in a small, dark, cool place and wait out the pain. I am oblivious to my surroundings except for the sounds and lights that assault my senses.
A car accident a decade ago made them worse. The headaches I got perhaps five times a year suddenly became several times a month, then several times a week, and now are almost daily.
My triggers include physical stress to my cervical spine (sleeping wrong on my pillow), soy, corn, preservatives, artificial sweeteners, the weather, seasonal allergies, irregular sleep, stress, irregular meals, alcohol, and aerobic exercise. Being in a crowd where I can’t hear well causes a headache, too – I’m talking about football games, crowded parties, and noisy restaurants.
Emotional surges can induce a migraine. When I was told my father died, one hit me immediately. Great joy can induce one, too. Winning a tough case makes me feel wonderful, and is always followed in just a couple of hours by a splittng headache. The shouts of boys playing inside on a rainy day, the birth of my favorite oldest niece and both of her siblings, a favorite song cranked to top volume, the satisfaction of a difficult job done well, the pleasure of a story completed after wrestling with the plot and characters for so long – all of these things make me feel wonderful, and all leave me with a hatchet striking my frontal lobe repeatedly.
In college, I would always get a migraine after the exam or after the term paper was turned in. I call it my neurological let-down. Once the period of stressful high productivity was over, my body and brain knew they could rest. Before I embarked on another project, a migraine would force that rest on me. The same thing happens still. I finish a brief, I’m through with a settlement conference, I leave a hearing and my head throbs. The stress is over; the migraine is just beginning.
I lose the ability to speak coherently. My brain fumbles for the right words. My fingers fumble with the Imitrex packaging. What sociopath at Glaxo-Welcome designed that packaging, anyway? It’s hard enough for someone without a migraine to open it, but someone with a migraine, who suddenly has the strength of a kitten and the coordination of a newborn has an extremely difficult time getting to the stupid pill!
Migraineurs know exactly what the ice pick in the eye feels like. We have experienced a head that literally feels about to explode, and we pull our hair in an effort to force the explosion to completion or we squeeze to hold it in. Other time we feel the vise tightening around our skulls, squeezing until we think the bones must shatter… but there’s nothing there.
Migraineurs have experienced soft pillows that are too hard. Walking up or down stairs is excruciating. Any movement causes a swell in the degree of pain, a giant THROB that suppresses all reason. Each footstep across a room creates those throbs, as does turning over in bed and sitting up to accept the glass of water and pill from someone kind enough to bring it to me. Turning one’s head during a migraine can be agony. Every migraineur understands exactly why decapitation would be a relief.
I’ve tried biofeedback, meditation, acupuncture, chiropractors, cupping, Chinese herbs, oregano, and magnesium supplements. I’ve tried several drugs that work for others, including Neurontin, Topamax (the gastro side effects of this drug were horrific), Verapamil, and Atenolol (Beta Blockers).
I’ve stopped working full time to reduce my stress levels, and moved my law office home so that I can take a nap when I need to. My bedroom is painted a dark mossy green and I have blackout curtains. I am careful to take cases that will not cause undue stress. I got out of a stressful marriage. I don’t drive more than an hour at a time because even on cloudy days the glare gets to me. Forget driving in the rain, too – windshield wipers are like strobe lights to me. They induce a headache in a very short time. Even the long shadows falling on the road through the trees in the late afternoon are enough of a strobe effect to set me off, and it only takes a few minutes.
In an effort to avoid soy and corn additives to food , I am now make almost everything I eat from scratch – I can’t eat any of the prepared meals from the frozen foods section of the grocery store, and practically no canned or packaged foods other than fruit or vegetables. My bread machine gets a great workout. I read food labels religiously.
My migraines are manageable with my current regimen of drugs, which includes an anti-seizure medication. Triptans like Imitrex, Maxalt, Zomig, and Relpax usually break off the headache. I use Vicodin ES for extra help in reducing the pain. I use Phenergan suppositories to quell the nausea. I take a mild muscle relaxer before bed to help keep my neck supple. I use ice packs, heating pads, and naps. I listen to cool jazz even though I really want to hear Foo Fighters. I never go anywhere without my medications. The pain killer, the triptans, the anti-nausea… I am a traveling pharmucopia.
I have also discovered a fantastic massage technique. It’s expensive, and my insurance doesn’t cover it, but once a month I go to a masseur who does myofascial release. I follow that appointment with a deep muscle massage. I have found that the massages not only help relieve muscle tension, but they help relieve stress.
Learning to live with chronic daily headache doesn’t mean giving up the fight against it. I go to my neurologist every three months, and I am always up for trying new procedures, drugs, supplements, and techniques to alleviate the pain and prevent the headaches from happening.
I am realistic about what I can do, though. Because I can’t be relied upon to be at functions (crowds stress me, and a headache is guaranteed), I do the behind-the-scenes stuff at my son’s school and for two historical societies I belong to. I wish I could do more, but I have learned the hard way that I usually have to say “no.”
Even the things I want to do will be torpedoed by a migraine. A coffee date with girlfriends, a dinner out, plans for the theater – all of these get derailed by migraines occasionally. My friends don’t understand. It’s just a headache, after all.
I’ve had people tell me, “Oh, you have a magnesium deficiency.” Nope, sorry. I tried magnesium and saw no appreciable difference in the frequency or severity of the attacks.
“Oh, you need to relax more,” I’m told. I have eliminated all possible stress from my life. It’s not just stress.
If I could tell you the number of times someone has told me about Topamax, or fever few, or acupuncture, or some other remedy! And even friends who suffer common migraine with aura don’t seem to get it. Mine occur almost every day, not once a month with my period (that stopped at 32 when the plumbing got yanked for cervical cancer). Hearing that this treatment or that treatment will “definitely” work amounts to a platitude. I want to say to them, “Don’t condescend to me. You have no idea what I’ve tried and what I’ve gone through.”
I live life one day at a time. The rare day without a migraine – today! – is a treat. I accept it with cautious pleasure. Tomorrow the drugs may work, and I’ll be able to function. The next day I may be in bed, wishing the Red Queen’s executioner would hurry up.