SLEEPSTARVED.ORG

  10-15% of the   U.S. adult population suffers with  insomnia chronically. Yet in 2005, the NIH  (National Institutes of Health) spent  a mere $20 million researching  insomnia. That same year, Sanofi  Aventis spent $123 million  advertising Ambien.

I’ve had insomnia as long as I can remember. I remember my parents trying to wrestle me to bed at what they called a “normal” hour, meaning any time before 1 A.M. “But I can’t sleep!” I’d wail. “Nonsense,” said my father, “of course you can sleep. “Everyone knows how to sleep. It’ s the most natural thing in the world—just close your eyes and relax, you’ll get sleepy. If only you’d listen to your mother and go to bed earlier. If only you wouldn’t get so wound up.” So it was something I was doing wrong, some obstinance of mine that I could change if I would.

My father was a normal sleeper and to the normal sleeper, sleep is “the most natural thing in the world.” He was a doctor, an old-style family practitioner who carried a black bag and delivered babies at home, one of a heroic vanished breed—but that didn’t mean he knew a thing about sleep. Sleep was no part of the curriculum when he was in medical school; it is barely a part of medical school curricula today, when doctors get as little as an hour or two instruction in sleep or sleep disorders. So the advice I hear from doctors these days is a lot like the advice I used to hear from him. “Just lie there and relax,” “don’t worry,” “go to bed earlier.”

What I mainly hear is that insomnia is a psychological problem, that it’s caused by worry, stress, depression, anxiety, some kind of neurosis or psychopathology. When I protest that I’m not particularly depressed or anxious, except about my sleep, that my lifestyle’s no more stressful than that of people I know who sleep fine, I’m offered an antidepressant. When I say, I think it’s hormones, doctors aren’t interested in my hormones. It was as though they already know, they’ve made up their mind, that it’s a psychological problem, something I could change if I’d change my attitude or ways. I then get told to avoid caffeine and alcohol, get more exercise, take a hot bath, warm milk, sleep in a dark, quiet room.

So I decided to find out what is going on, that I’m still hearing the same advice I heard fifty years ago. I started talking to the researchers, to find out about the state of the science, and talking to the people who live with the condition, to find out what they know. I think that people who live with conditions have inside information about these condition. We live in our bodies. Women have always known that hormones affect sleep, that insomnia is worse at certain times in the monthly and life cycle, though it took researchers till the late nineties to catch up to this realization. If someone had asked us, they might have figured it out much sooner.

I wanted to hear what insomniacs have to say, their hunches about how they came by insomnia, what they’ve found that works. I tracked down everyone I’ve ever heard of or known who has insomnia, friends, friends of friends, relatives of friends, acquaintances, colleagues, students. I placed ads, I spent late night hours on the Web, surfing message boards, blogs, newsgroups. And I learned that, sure enough, insomniacs have fascinating ideas about where the problem came from, and wonderfully imaginative ways of dealing with it.

I started going to the sleep meetings. Yes, there are such things, and they’re a big deal—more than 5000 people attend the annual Association of Professional Sleep Societies, where scientists, physicians, psychotherapists, nurses, geriatricians, social workers, epidemiologists, sleep technicians, drug company representatives, gather from around the world to share the latest in research and treatments. At these meetings I learned how little is actually known about insomnia—and how little is known about sleep, for that matter. I realized that insomnia can’t be written off as a psychological problem, when so little is known about it, and when so much about sleep behavior—how much sleep we need, whether we’re morning or night people—is inborn and genetic.

I wrote the kind of book I wish I’d had all these years dealing with insomnia, a guide through this territory that normal sleepers barely know exists. Insomniac is not a self-help book, but a self-enabling book, says an Amazon reader. I don’t offer a “program” but I do describe things people find helpful, ways they might think about their problem and approaches they might try, a potpourri of methods and approaches gleaned from living with the condition and talking to others who live with it, not listening to “experts” who’ve never had a sleepless night.

Some of what the experts tell us is very true and important, like being careful about caffeine and alcohol. But nobody can tell you “the sure rules to sound sleep.” You have to find out for yourself what works for you. Experts say, don’t read in bed or watch an exciting DVD close to bedtime. In fact, many insomniacs find that reading in bed helps them sleep—and I find that a DVD helps. And the more dramatic and vivid it is, the more likely it is to send me to sleep with visions of other places, other lives, dancing through my head—and all the more likely it is to help me sleep. (Nothing violent or too depressing, of course.)

There are many routes to insomnia and many routes away from it, ways as individual and idiosyncratic as we ourselves are. Different strokes for different folks. That goes for meds, too. Don’t assume that the first drug your doctor offers you is going to do the trick. I’ve learned about managing sleep medications through a long, painful process of trial and error. What I write about meds may spare others that pain.

You have to find your own way. Do your own research. Read widely, my book and other books and what’s on the web—find out what works for other people, learn all you can. Try things out, then cobble together something that works for you. There are no one size fits all solutions. There is only what you can find that works.

And communicate. Come out of the closet. Let people know—friends, families, employers—that this is a serious problem, seriously disabling, that it’s not going to go away with a hot bath or warm milk.

“Maybe sometime in the future, around the year 2000, say” wrote Douglas Colligan in Creative Insomnia, in 1978, “we’ll have toll free hotline number 800 NO-SLEEP for the National Information Network of Insomniacs Anonymous. It’s a brutal fact of life that while people who are victims of everything from schizophrenia to hay fever have some group to turn to for help, the insomniac has to rough it alone.” I wonder, if Heath Ledger had had such a hotline, might he have reached for the phone instead of for another drug…

But the year 2000 is long past, and no hotline exists. Insomniacs still have no patient-organized advocacy groups to put pressure for more research, no support groups other than a few on-line chatrooms. There are national organizations for sleep disorders that are far rarer than insomnia—narcolepsy, apnea, and restless leg syndrome—and for just about any other problem you can name, but there are no patient-organized groups for insomnia.

Have we been so talked out of our experience, so shamed out of it, that we’re not sufficiently on our own side to organize on our own behalf? Maybe it’s time we find our voices.

On New Year’s Eve, home from a party, around 3 AM, I happened onto a blog on a New York Times Nov. 7 article, “Curing Insomnia Without the Pills.”

http://well.blogs.nytimes.com/2007/11/05/curing-insomnia-without-the-pills/

599 people had responded to this article, which was one of those well-intentioned articles, “you can sleep without pills, just follow the simple rules,” and I sat there riveted, read through all 599 postings. There was no heat in the room where the internet connection is, I was freezing, bundled up sweaters and coats, and I sat there until 5 AM, reading every single posting. I was amused to come upon the comment, somewhere in the 400s, that if you’ve read this far, you know you’re a real insomniac. Yup!

There were so many voices on this blog that could have been me talking/writing. Here are a few:

I have tried these B-mod techniques, and they are probably good for someone with garden variety insomnia, but not for true sufferers. And it is hard to listen to all this light chatter… and once again have the blame cast on my behaviour problems. It just ain’t so. …

So please ease up on the cheery light approach to a very real, and disabling problem. One size does not fit all.

Great advice and easy to follow if you happen to live in an enclosed contemplative monastery. Any advice for the rest of us?

As a person who suffered for many years and consistently tried all of the “behavioral techniques” listed, I can’t even begin to express how annoying advice from people who don’t really understand the problem can be.

While I wouldn’t ignore the sleep hygiene advice, it is not an adequate answer for most of us. Just once I’d like to hear an honest “There isn’t much we can do.”

the article trivialized the pain, suffering, and potentially lethal consequences created by severe and chronic insomnia.

Don’t tell me to go see any more doctors who can’t get their heads out of the clouds because they think they know what it is I go through… Try and understand what it is a real insomniac goes through and let everyone you know that for people like me…we don’t care if Ambien is addictive… For us it is a small miracle that gives our lives normalcy.

I was amazed to hear so many people saying exactly what I said in the book—or maybe not so amazed, since if I hadn’t thought there were lots of us, I wouldn’t have spent six years writing Insomniac. I was heartened to hear so many sticking up for themselves, saying, enough is enough, we don’t want that same-old advice. To be fair, there were other voices, who said that behavioral modification did work— one guy who’d been to boot camp said he learned there that “it works.” And it does work for some—how many, and what kind of people, and what kind of insomnia they have, nobody knows.

I was also interested to see how many people said they’ve lived with insomnia all their life, had it since childhood—and yet childhood onset insomnia is said to be rare.

I’m always moved, when I read through postings from insomniacs, to see what people live with, how they manage. And also intrigued to find the things they come up with, ways they find of living with it. I recommend this blog—it’s good reading.

I have learned more about sleep from this lively discussion by many obviously experienced and knowledgeable readers then I would have had I gone to a sleep clinic.

I’ll keep this site—will not feel alone with my problem again” wrote a 74 year old woman, four hundredth something.

I got to leave the 600th posting, on the cusp of the new year, and to say Happy New Year.

And P.S., at the party I’d just come home from, I’d consumed nearly a bottle of champagne and several rich desserts. I then stayed up way too late, staring into a computer screen till nearly dawn, and with all that booze and sugar coursing through my system, violating every rule in the book, I dropped off and slept six straight hours, without a pill, something I manage maybe a half dozen times a year. Go figure. Of course, it might as easily have flipped the other way. I guess in a way that’s not very helpful, I’m sort of fatalistic about my sleep. Sometimes the sleep fairy visits, mostly she does not.

A few months after I came upon Tara Parker-Pope’s blog, March 21, my book Insomniac got featured on that same blog , “The Wretched Life of the Insomniac,” “Writer Gayle Greene’s new book, Insomniac, from the University of California Press, is both memoir and investigation into the world of insomnia.…. ”??http://well.blogs.nytimes.com/2008/03/21/the-wretched-life-of-the-insomniac/

I wish Parker-Pope had called this blog something other than “The Wretched Life of the Insomniac,” since that title is so untrue to the spirit or content of my book. It makes it sound like one long moan, when in fact I say clearly that I’m one of the lucky ones, someone who has the good fortune of being able to structure my own work hours and who sleeps better than many of the people I interviewed for the book. Besides, INSOMNIAC is not just about me. It’s about millions of people who have worse insomnia than I do, who are caught in a 9 to 5 world and impossible schedules, trying to get kids off to school. it’s about trying to understand the problem from scientific and medical points of view, about learning ways of living with it, about getting insomnia taken more seriously. It is NOT about my wretched life because I don’t actually have a wretched life.

Anyway, there were some great comments left on this blog, such as,

I wish the medical establishment would do more to really address this and stop just doling out pills or advice I tried 15 or 20 years ago that did not make a dent in this. I believe this is as much a chemical imbalance as serotonin problems, and wish medical research would get to work on some real solution to this.

But the discussion got massively derailed by “Jack,” who, in comment #2, pointed to the glass of wine in my author photo as evidence that I hadn’t made all the necessary lifestyle changes (actually, since May I don’t even drink wine—not that it’s made any difference to my sleep). And Jack kept coming back, like a bad burp, accusing us insomniacs of wanting a quick fix, of whining, of choosing to suffer and enjoying our victim status.

I’ve met a lot of people like Jack. In my book I write about the negative stereotypes insomniacs so often come up against, from doctors, colleagues, friends, even family. Even in the scientific literature, I found insomniacs caricatured as neurotic, whining snivelers, chronic complainers. And along comes Jack, like Exhibit A, to make my point.

People in the rest of the blog called him a jerk, said he was just looking for attention, had self-esteem problems.

Jack, what is your problem? Have you never heard, “If you don’t want to help, at least don’t get in the way of those who do?” All you are doing is parading your own ignorance and tacky disposition.

Have you considered that seeking out a blog like this, just to comment that other posters are whiners, is also a form of whining?

Then other people came to his defense. Jack, in fact, provoked a lot more comments and got a lot a lot more attention than I did. His ideas, if you could call them that, were referred to again and again; mine got lost in the shuffle.

It was painful to see my book, which took me six years to research and write, get lost like this, and Jack, who hasn’t a clue what he’s talking about, get taken that seriously, making the discussion fizzle and dribble away. Why is it so hard to get on with the work we need to do? — to get people to recognize insomnia as a serious problem, seriously neglected, underresearched and underfunded.