The New York Times Opinion Down the Rabbit Hole With Chronic Daily Headache By Paula Kamen February 10, 2008,  7:47 pm When he plunged Alice down the rabbit hole, the author Lewis Carroll was armed with a powerful tool from his own inner life to make his heroine’s journey all the weirder: migraines. He certainly took advantage of the vision distortions that accompanied his particular spells to make Alice feel as clumsy and disoriented as possible in her far-from-wonderful “wonderland.�?/FONT> The malady also appears specifically throughout the story as directly afflicting other characters, such as Tweedledee, who comments, “Generally I am very brave…only today I happen to have a headache.�?/FONT> Alice’s constant confusion in dealing with authorities she meets along the way also may ring true for the chronic-headache sufferer. “Alice felt dreadfully puzzled,�?Carroll wrote, describing her reaction to the Mad Hatter at a tea party, “The Hatter’s remark seemed to her to have no sort of meaning in it, yet it was certainly English.�?This is a comment that could, in my view, describe a patient’s state of mind after a typically brief conversation with a high-level neurologist. As a serious headache sufferer, I often think of Alice’s bizarre and circuitous head trip, as I navigate my own every day. This is the case even though I, technically, don’t suffer migraines. What I have is regularly confused with and grouped together with “migraine.�?But it’s different, medically classified as “chronic daily headache.�?This admittedly bland, yet usefully descriptive term has been increasingly employed in neurology for the past 20 years. Most C.D.H. patients (accounting for 4 to 5 percent of the population, compared to migraineurs at 12 percent) experience pain for much of the day nearly every day. For a smaller and less treatable subset of patients, like me (0.5 to 0.7 percent of the population), the pain never lets up. In my posts here on “Migraine�?this month, I hope to address the alienation of the C.D.H. patient. To start, before discussing the sources of the deep-rooted misunderstandings about the condition and some new illuminating research about it, I’d like to lift the veil of secrecy and give those of you without the problem on a little tour, in the spirit of Lewis Carroll. It’s a subterranean, and truly absurd, netherworld of questionable tonics, of doublespeak, and of condemning authorities who pronounce seemingly random verdicts, where you cannot trust the logic of your own senses to guide you through it all. Here, I present, in condensed time-warping fashion, 13 years in the life of a typical C.D.H. sufferer, based on my own trip that started in 1991: *      *      * You’re 23, and life is going well �?except for that constant drill-like piercing in the left temple and behind the left eye. It started that spring. At first, it appeared only a few times a month, but then, by fall, every day. And, now, by first snowfall, that pain is non-stop. You resort to swallowing handfuls of every anti-inflammatory product under the sun. But these meds that used to work fine for your occasional tension headache now seem no more potent than the average Tic Tac, even though they are indeed powerful enough to bore a new hole in your stomach. Your headache has become a constant companion in your life. It is now The Headache. You visit a neurologist, who asks you seemingly unrelated questions like, “Do you know who is president?�?He takes notes that you have brought your mother along on your visit, a true sign of dependence. His verdict: “You have tension headaches.�?He tells you, “To get better, get rid of your boyfriend, quit your job and just learn to relax.�? The next neurologist assures you that the problem is “rebound headaches,�?�?your brain’s reaction to all those Advils. “Stop taking them immediately,�?he says. You do, but for many months the pain persists. Later, when you return, he asks: “Have you ever considered therapy?�? You see several other doctors who give you a series of “preventive�?drugs, to be taken daily. But something is odd about these drugs. They are almost all borrowed from different classes �?mainly antidepressants, anti-convulsants, and blood-pressure medications �?and have indeed helped some people with their headaches. The Food and Drug Administration has never approved them for headache prevention, and they are called “off-label.�?Still, you still take them, but the major result, besides insomnia and increasing mental retardation, is weight gain. You discover every week that your clothes are now smaller and smaller. Plus, you are now too drugged out to work effectively. To explain your lack of productivity on the job, you tell your boss that you have “migraines,�?which you know she’ll understand and take more seriously than the less serious sounding “tension headaches.�?“Any day now, I’ll find the right drug to cure it,�?you assure her, which you honestly believe. At a book-discussion group you force yourself attend in an attempt to salvage some of your fractured friendships and prove yourself as newly reliable, someone brings up the topic of women who complain of pain and fatigue problems. An overeducated and world-weary English-major type opines that it’s probably all a result of fin-de-siecle malaise. You wonder if she’s right: “Wow, I am one dedicated social critic,�?you think. You finally see a shrink, try to change every aspect of your clearly troubled personality, and meanwhile address and repair all childhood wounds. You are now totally mentally well adjusted. But the pain continues. Desperate, you decide to go to the ultimate medical specialist, a big headache clinic that is always promoted in the papers. The doctor nods his head empathetically, then promptly institutionalizes you. He sends you to the clinic’s in-patient unit in a local hospital for two weeks. After all, he explains, the drugs you need now are so strong that you have to be supervised non-stop. In between injections of drugs, you try to pass the time at the clinic art class, involving pasting macaroni to paper in random patterns. After being released, you are now muddling by in a drug haze, now really hardly able to figure out who is president, but the Headache has lessened. You are so grateful that you accept the hazy mental state, along with side effects of insomnia, more weight gain and the worst nightmares of your life. That is until the drug stops working six months later. Your spirits are uplifted by the promise of new and improved migraine drugs that roll out, to much fanfare. You get an injection of one, Imitrex. But it does nothing, maybe because your problem isn’t migraine. You now plummet to new levels of depression, thinking that headache clinic was the “end of the road,�?and hatch some new kinds of dark thoughts you’ve never had before. One day, you happen to watch a PBS special about the “mind-body connection.�?With a sense of renewed hope, you empty your closet of drugs into the garbage. You vow to work your way to health, taking up yoga, regular exercise, meditation, and a gluten-free, caffeine-free, and otherwise restricted diet. In other words, you now can only consume twig tea without guilt. But you are thrilled you are able to work, albeit with some struggle, because you’re no longer on any drugs. Your brain is now clearer than it’s been in years, when this started. But after about a year, now uncertain about the “mind-body�?connection, you are convinced of the “mind-wallet connection.�?Your insurance has covered none of these treatments, except for $35 of each visit with the acupuncturist, who also happens to be a certified chiropractor. You do get some relief from such visits, but it’s always temporary, less than a few hours�?worth. And the drain of covering the $85-an-hour visits (cash only) three times a week, and $50 tubs of required herbal supplements they all sell, creates more overall stress than it relieves. You lose patience with how “unmedical�?all this is, with your final alternative practitioner, a maverick chiropractor, operating from the back of an insurance office in Skokie, Ill. Now you decide to take the well-worn and comforting double-blind control group-tested road of Western medicine. You can drink coffee again! This time, you go to an allergy doctor recommended by the cousin of a woman your mom met in line at the local Jewel. After digging around in your nose a bit, he triumphantly declares, “You have a deviated septum, deviated to the upper left, which I have no doubt is causing your problem! After all, your headaches are all on the left!�?Elated, you go into surgery to bring your nose bone new symmetry. When you come out, the pain is ten times worse, now on both sides of your head, with the hyper-sensitized nerves around the eyes all seeking holy revenge for the violence you have wrought upon them. You wonder if you can ever write, or even read, again, with all that pain. Thankfully, weeks later, the pain slowly settles down to pre-surgery levels. You think: now what? Now cleared of all illusions, it’s time to climb out of the rabbit hole. But can you? You decide to write a book about the problem, maybe get an answer that way. For the first time since you’ve gotten The Headache, you are now spending your very limited energy gathering lots of medical facts. You gather new research on the problem, which is now being released with new clarity and robustness. That, and with meeting people starting chats about the issue online, you realize you are far from alone. They have mostly all taken similar topsy-turvy journeys for relief, which before had seemed totally idiosyncratic. While the pain persists, you still slowly start to feel like you’re stepping out of the rabbit hole. Maybe there is hope, after all.