Head case

To anyone who's been through this, your litany of "off-label" drugs is going to seem grimly familiar. Klonopin, Paxil, Neurontin, Nardil, Depakote -- every few pages I would slap myself on the forehead and say, "Leslie took that one too!" Your experience, and hers, would not seem to be uncommon: You go to doctors and they nod and act all confident. They give you powerful drugs with all kinds of unpredictable side effects, and -- for a lot of people -- they just don't work.

That was a huge shock to me. I had grown up thinking doctors always had the answers. It sounds naive, but this was a time when alternative medicine wasn't big and questioning doctors wasn't really in the culture. I kept thinking it was just a matter of a few weeks. And I also thought for most of the last 15 years that I was the only person all these drugs didn't work for. It was a revelation to see studies that only about 50 percent of people with CDH respond to drugs, and to understand how crappy -- excuse me, how limited -- the options are.

There's been very little testing with CDH in general, so a lot of it is just anecdotal. Doctors prescribe things with very little explanation. I've had people read this book and tell me they had no idea the pill they were taking every day was actually an antidepressant. It's just so bizarre: You might be taking a blood-pressure medication one day and an anti-epileptic drug the next. And there are huge side effects.

You had a lot of dramatic side effects. What drug was it that made you gain so much weight?

That was Nardil, an old-fashioned antidepressant. It actually worked for about eight months, but without warning I became the Incredible Hulk. I was bursting out of my clothes, almost. For a single woman in her 20s, that was especially fun. It was like chick lit gone mad! You know, Bridget Jones complains when she gains seven pounds.

Then there are the drugs that just wrapped you in a mental fog, right?

Yeah, I started taking Klonopin without knowing what it was. I didn't know it was a major tranquilizer until I saw "Behind the Music" with Stevie Nicks many years later, and I was like, "Oh my God!" I thought I was neurotic because it was so hard to get off that stuff, and she's on TV saying, "Yeah, I was institutionalized for three months getting off it, and then I went into seclusion for two years on my ranch." So it wasn't just me.

Then you had nasal surgery. You went to an ENT specialist, and he decided you had a deviated septum and that was the cause of all this.

And two others agreed with him almost completely. It was just black and white with them.

And that made your pain dramatically worse in the short term -- but only slightly worse in the long term!

Yeah. That was the bright side. [Laughter.]

Then you actually became so dependent on a drug that you had to come up with your own rehab program.

Yeah, just flipping back and forth between three PBS channels. "Antiques Roadshow," that was perfect for my rehab. That was the worst, by far. That made Klonopin seem like nothing. That was Xanax. I was on a very low dose, so I thought it was just me, but that's even more addictive than Klonopin. It was pure hell, because a lot of doctors don't understand how difficult it is for people with pain to get off these drugs. When you try to lower the dose, the pain gets 10 times worse. It was like a chain saw cutting through my head. That was a low point, worse than the surgery, probably.

People may hear Xanax and think I'm a drug addict or whatever. I want to make clear that I never abused it, and I was the advocate for getting myself off of it. Nobody was telling me to.

You write that you never tried street drugs or recreational drugs to relieve the headache. You must have heard, anecdotally, that marijuana helps a lot of people.

Yeah. I don't know how much I should say on Salon.

You're among friends.

I never used it habitually. Like everybody else, you go to a party and somebody has it ... Like anything that's relaxing, cannabis has been used to relieve pain. It was a legitimate headache drug in the 19th century.

In my wife's case, for a while it was the only thing that really worked. We took this infamous trip to Quebec once, and the whole way north through New York state it was like being in a Cheech & Chong movie. I was driving through the Adirondack forests with this tremendous contact high, with the person next to me baked out of her mind. She finished off the dope before we got to the border, and there we were, greeting the Canadian immigration officer with this ganja stench billowing out of the car. But her neurologist told her that it helped a lot of people, and that he'd definitely prescribe it if it were legal.

Wow, that's all news to me. It was never prominent in my mind as a choice. But I am in Madison right now, so it's fortunate you brought it up here! [Laughter.]

Yeah, look into that. Although I should observe there are obvious downsides to consuming that much cannabis. Speaking of alternative medicine, you spent a lot of time in that world and you come back with a mixed report. What I got out of it is that you learned some valuable coping skills in that realm.

Right, it's not black and white. You see a lot of stuff now about how alternative medicine is totally great. They did a segment about chronic pain on the "Today" show recently, and all the sound bites were like: "Alternative medicine is great! Science says it helps!" In reality, you get what you can out of it, and there's some stuff to really be cautious about.

It was a turning point in terms of basic philosophies of coping. It's going to sound trite; a lot of it is obvious. But I had to learn the concept of detachment, and learn the difference between physical pain and mental and emotional pain. Before, when the pain got worse, I got all depressed and emotionally upset. Now I've learned to distance myself. I mean, easier said than done, and a lot of days it's just not possible. But in general my life is a lot calmer, it's not, like, this emotional roller-coaster ride. That has been extremely helpful.

You write about that very movingly: The hardest thing for you, in many ways, was not the physical pain itself but the way it made you feel and the way you judged yourself.

There's so much suffering, and so much of it is emotional and mental. You feel incredible guilt, you feel like you're the only one who has this. It's the opposite of hysteria, which is supposedly caused by all the openness, all the media attention that makes everybody believe they have these things. This is the opposite, where you believe you came up with this on your own, you invented it. These drugs should be working, so you're unresponsive. The alternative medicine should be working, so you're not thinking positively enough or working hard enough.

That's the type of suffering that I can help to relieve. I'm not a neuroscientist, so I'll leave the physical part to them. But I can help reduce that incredible guilt and shame and frustration.

Next Page: One alternative treatment involved pouring fig tea into her eyeball

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