Head case

Can you summarize the current thinking as to why it appears that women are more likely to have these pain and fatigue illnesses?

Neurologically, women seem to process input differently, and it's more likely to translate to physical pain. It's not just hormones, because 14 percent of women in their 70s have a chronic headache problem. That shows that it isn't just the monthly hormone fluctuation, although for some women that's clearly a major trigger. For others it isn't as much. You have to understand that chronic daily headache or chronic migraine is basically a disorder where the brain is overreactive to stimuli, be it hormone fluctuation, stress, the weather or whatever. That's translated into pain; it's an oversensitivity.

It's complicated, but I should add a major point, which is one of the main reasons I did all this reporting. Just in the last several years, there have been these advanced types of brain scans, the PET scans and functional MRIs. With fibromyalgia and migraine and chronic daily headache, those scans show differences in the brains of people who have these things. So it's fascinating, because these things that were always considered to be invisible, and thus in some way not real, are now more and more considered visible. It's not like you can shine a PET scan on someone and see their pain, but they do detect measurable differences in the brain.

That's the beginning of a huge change, isn't it? As these diseases become visible, in terms of medical testing, that's almost an epistemological shift in the way they're understood.

Exactly. It's a major point. I've been to a lot of medical meetings, and on the highest level, neurologists are taking this very seriously. But then you find a lot of skepticism from doctors who haven't been in medical school for 40 years or whatever, and are tied to an older model of thinking.

Sure. I know very well, from my wife's experience, that some physicians -- and most shrinks -- still assume that chronic headaches have a psychological basis, or are rooted in the patient's personality. You write about this very movingly; you went through a period of self-doubt on that issue, basically doubting whether your symptoms were "real" or you were just inflicting them on yourself.

Oh yeah, definitely. You know, this is what our culture tells us, so much: It's really a question of mind over matter. You can overcome any sort of weakness through force of will. If you can find whatever the emotional block is, that's all it takes. It can be very hard to overcome that whole notion.

For a long time there was this whole medical conception of the "migraine personality," the overstressed, type-A, self-tormenting individual, generally a woman, who was sort of inviting these headaches. Has that idea finally been banished?

Well, in medical school today, they teach that that's totally not true. I interviewed a brain researcher, Dr. Nahib Ramadan, and he says there is no migraine personality. But it is true that if you have chronic headaches, a "co-morbidity" is often anxiety and depression. So it is more common to see those things in headache patients, but that's not their personality causing the headaches.

Well, I'd be anxious and depressed if I had headaches every day. I realize it's not quite that simple, but come on -- constant pain is going to change your "affect," as they say.

That's a problem when you go to doctors or shrinks -- you come in and you're visibly depressed because your whole life is falling apart due to chronic pain. So they blame it on depression. It's extremely common. There's very little understanding of this concept. Chemically, a lot of these things seem to be close to each other, and that's why some of the same drugs are used for depression and chronic daily headache.

Right. So the current thinking is that there's some neurological connection between a whole variety of disorders that include migraine and chronic daily headache, depression, epilepsy and bipolar disorder. Is that right?

Very good. You did your homework.

So people with one of these illnesses are more likely to have one or more of the others?

Yes, by far. If you have chronic daily headache, you're twice as likely to be bipolar than the average person. You're still talking about only 8 percent of people with CDH who have bipolar disorder, but that's twice the rate of the general population. That's a big focus of studies in the last few years, and I didn't know about any of that until I started doing research for the book. I just thought I was this freakish thing out in my own little world. I didn't know about the neurological connections. I didn't know if it was neurological. That's why I wrote the book.

Wow. So the whole time you're going to all these doctors and other health practitioners, you didn't really understand the science behind your headache?

Right. Because a headache becomes like an inkblot test to every doctor you see. You go to an alternative doctor and of course the problem is that you're eating wheat. I'm not even kidding. I heard this from many people: It was wheat, or dairy products, or toxins in the environment. The massage therapist insists it's a muscle contraction disorder; the chiropractor insists that it's all because of a spinal irregularity. Once I started going to medical conferences and interviewing people about all the new research and the new scanning technologies, it finally became a lot clearer.

Let's talk about your specific case. Even though you start your story by putting in your contacts on that particular summer morning in 1991 and getting a raging headache that never went away, you now don't exactly see it that way. In fact, you'd been building up to it for quite a while.

That's true. In reading books about people with chronic illness of all kinds, it's really common for people to point to one dramatic incident where it finally sunk in that something was wrong. In reality, for most people, it's something that develops under the surface. In my case, the nerves were becoming more and more sensitive over the years, and it got harder every year to put in my contacts. Finally it caused physical pain.

Right. And that pain launched you on this incredible odyssey. You see many kinds of physicians, you undergo useless and painful surgery, you take this amazing catalog of pharmaceuticals, including one that gets you addicted. You see several psychiatrists and psychologists. You visit every kind of alternative health practitioner I've ever heard of, and some I haven't. How many health practitioners, in total, have you consulted in the last 15 years?

Well, I have a list in one of the last chapters. I'd say it was at least 100, easily.

Next Page: "I didn't know Klonopin was a major tranquilizer until I saw 'Behind the Music' with Stevie Nicks many years later"

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