The worst thing, to me, about having a non-stop multi-year headache isn’t necessarily the pain. Or the way it tends to disrupt intimate relationships, empty all financial reserves, and sabotage the best-laid career plans. It’s not even the endless barrage of (albeit well-meaning) suggestions for “cures” from everyone you meet, most of which you’ve already tried anyway (except for the colon cleansing and the Jews for Jesus conversion).

No, it’s the emotional suffering – from all the guilt and the shame, of patients like me thinking it’s our entire fault, and maybe all in our heads. (thinking it's our entire fault, and maybe all in our heads. I just had to repeat that because it's brilliant.)

But, in the past several years of the past 17 of life with my Headache, I’ve learned to reduce much of my nagging self-blame through basic education about neurology. Compared to when I started, I am now infinitely more informed about this particular and absurd disorder, clinically termed “chronic daily headache,” defined as having a headache at least 15 days a month, for at least four hours a day. And I know such education about of this condition can also help to greatly relieve others’ similar suffering, to make their journeys seem less isolated, subterranean and peculiar. It’s a key step to begin to leave the rabbit hole.

For an update on the growing tide of myth-busting scientific research on chronic daily headache, which could also apply to many types of chronic pain disorders (amen) , I talked to neurologist Lawrence Robbins. I most came to appreciate him several years ago using his research for my 2005 book on the topic, “All In My Head” (as well as by being his patient). He has operated a headache clinic in Northbrook, Ill., for 20 years, and is assistant professor of neurology at Rush Medical College in Chicago. He also was just awarded the national pain management award by the American Academy of Pain Management. He believes in making patients informed, which is a goal of his Web site, (which has as a new addition this week “Headache 2008-9,” a free 72-page update). And he has been an advocate for the toughest cases as founder of a section of the American Headache Society on “refractory” headache patients (those that don’t respond to treatment); basically that means C.D.H. patients, who comprise a majority of that group, he said.

But, while he helps many patients, I most appreciate him for admitting when he doesn’t know something. Contrary to what many doctors may think, we patients prefer this approach over the alternative, mainly characterizing the pain as psychosomatic or prescribing ill-fated and possibly expensive treatments just to send the patient home with something that looks like a “treatment.” (Oh how I wish so many doctors would have just thrown up their hands instead of throwing insults at me.)

At the start of our conversation, Dr. Robbins recognized that recent advanced scientific research about the dynamics of C.D.H. in the brain has not yet translated into equally advanced treatments. This is in contrast, very relatively speaking, to the experience of migraine patients. Their lot was improved, starting in 1992, with the introduction of Imitrex, the first of about a dozen “triptans” currently on the market. While they don’t work for all, are costly for the average person (costing at least $20 per pill), and carry their own side effects, they are more effective than any other tool previously available to abort a migraine at the first sign of attack. Meanwhile, the C.D.H. patients are still left in the dust with poorer treatments.

He stressed that a well-known problem with the typical daily preventive drugs prescribed to C.D.H. patients, all stolen from other drug classes (such as anti-seizure medications)(sounds familiar--maybe part of the Inflammation Theory?), is their long-term effectiveness. It’s actually not difficult to get short-term relief for any type of pain, whether from daily “preventives,” the friendly neighborhood opium den, mother’s little helpers, or a distraction from a kick in the kneecaps. Finding a drug that you can take every day, and not be reduced to a hazy-brained zombie unable to tell time, is the challenge. In 1999 and 2004, Dr. Robbins conducted two similar studies of 540 C.D.H. patients to determine how many were able to stay on a medication for at least nine months. In both, only 46 percent were able to stick this out because of diminishing effectiveness, intolerable side effects, or both. (The first was published in the Journal of the American Academy of Pain Management in October of 1993, and the second was presented as an abstract at the 2003 meeting of the American Headache Society.)

Ignoring these limits, often doctors blame the patients for the drugs not working. This is a common pattern in medicine, to use a drug to “scientifically” diagnose a disease. Episodic migraine, which was classified as “psychogenic” over the Freud-governed middle decades of the 20th century, only became credible as biologically “real” in the 1960s with the introduction of a newly effective and much lauded preventive migraine drug, methysergide, actually derived from LSD, which may help explain a possible side effect of terrifying hallucinations. (It’s best known as the brand name Sansert, which was discontinued in the U.S. in 2002 because of potential harm to the heart and kidneys). The superior triptans of the 1990s also helped make migraines more legit. (Kind of the way in which Lyrica is seeming to make fibromylgia more legit or at least get word out there.)

At same time, Dr. Robbins pointed out the irony that many doctors also are too quick to blame drugs themselves, most specifically over-the-counter painkillers, for causing most chronic daily headaches. He said that highly publicized studies from the past decade overstated the effect of “rebound” headaches, which are caused by the repeated use of pain medications that can gradually make the brain more sensitive to pain. He said that the newest studies, which have been able to take a more long-term approach, show that only “between 33 and 50 percent of patients do achieve long-term benefit from decreasing pain medications.” (Two examples he cited are studies in the journals Cephalalgia from 2005 and Current Opinion in Neurology from 2007) But many doctors still tend to blame the patient who still has pain after tossing out their Excedrins as subconsciously “attaching themselves to” their pain,” forgetting that he or she had daily headaches for 20 years before taking it, he added.

The sheer chronicity (nice word--I may have to use this) of C.D.H., which is what makes it biologically harder to treat, also makes it more suspect. According to creaky psychoanalytic thinking, the more chronic something is, the more the patient is getting something from it, termed as a “secondary gain.” (Interesting.) This philosophy was officially thrown out of medicine in the 1970s, but still persists (oh God, does it ever!), not so much in medical texts, but in self-help books for general audiences (or in medical professionals' minds--just because it's no longer seen as valid doesn't mean the thought isn't there). This is even the case in one of the top-selling mass-market headache-prevention guides of the decade, Dr. David Buchholz’s “Heal Your Headache.” While he certainly gives much valuable advice about lifestyle tools for prevention, he blames those most severe patients who don’t get better with his plan. In a section on “hidden agendas,” he explains patients that he can’t help are likely to be subconsciously attached to their illness: “Being identified as a headache patient – especially a failed [italics his] headache patient – may actually be valuable to some people. At least it’s an identity; it distinguishes you. Giving this up leaves a vacuum, and filling the void may not be so easy.” (I have thoughts in many directions on this topic. Sometimes chronic pain sufferers do identify themselves with a condition in order to cope and when they find some relief it's sometimes hard to admit it for fear of losing a part of one's identity. If society weren't so quick to have us identify ourselves, the cycle would never begin.)

This reasoning of tying the most chronic problems to psychological causes also defies basic knowledge of brain chemistry. Researchers are now more informed than ever about the process of “chronification” of disease in the brain. According to advanced brain scans – which now render very few illnesses truly “invisible” – the brain, when pummeled with repeated pain attacks, becomes vulnerable to “central sensitization.” That means that the central nervous system becomes overly sensitive and stuck in a pain feedback loop. (yep.) That is why doctors like Dr. Robbins recommend early treatment for migraines that seem to be getting more frequent, to break the cycle before they turn into the less treatable chronic daily headache.

“Central sensitization is like kindling logs on a fire,” Dr. Robbins explained. “You also get that with depression. More depression begets more depression. (darn skippy!) You get that with epilepsy and seizures. You get more seizures. You get more headache and you get more headaches. … And once you get central sensitization where the chemistry of the brain really gets changed more toward a chronic pain state, it’s tough to back up the bus.”

Dr. Robbins also pointed out other common misunderstandings doctors have about C.D.H. patients, which, again, also apply to chronic-pain patients in general. Most are women – more easily dismissed as “complainers.” (Thank you very much.) “In general men are taken more seriously than women in terms of pain,” he said. (Don't I know it.) Women are biologically more prone to central sensitization and chronic pain (and fatigue) disorders. They are three times more likely than men to get episodic migraine and twice as likely to get C.D.H.. And when they have a headache disorder, they are more likely to be disabled by it, with the added jolts of hormonal shifts.

He added that doctors are less likely to take C.D.H. patients seriously because they are indeed very likely to also palpably suffer from anxiety and depression. It’s easy, then, to just blame the pain as being a result of these “mental problems.” (Instead of trying to stop the cycle which created or at least aided and abetted them.) But, of course, having non-stop pain would be enough to depress anyone (despite the supposedly newfound glamorous “identity” of pain patient)(it'd be enough to do more than depress some). Again, Brain Chemistry 101 explains the correlation. Head pain can be caused by the same chemical imbalances which lead to anxiety and depression. They are two different results of the same root problem, known as “comorbidities.” (Indeed, some of the most effective preventive drugs taken for headache prevention are antidepressants, which address the same offending neurotransmitters.) (as are a lot of drugs taken for IC, PFD and vulvodynia. Also, many PCOSers are given antidepressants as a part of their whole medication package as the disorder often makes us victims of a cycle of depression in more ways than one.)

Many patients, hungry for validation, take significant comfort in learning such facts, even when their pain isn’t totally relieved after treatment. Dr. Robbins said that his patients are grateful when they first hear the word “chronic daily headache” at a visit, showing it’s something they didn’t conjure up themselves. “People think that maybe they’ve heard of one other person [with a headache all the time]…Their doctors have marginalized them telling them, ‘Get rid of your husband, quit your job and get off the Excedrin, and your headaches will be fine.’ But when I tell them that millions of people have the same thing, they can’t believe it…It helps a lot to know that they’re not alone.” (That's the very reason I started this blog.)