SLEEPSTARVED IS BACK!

Sorry this site was down for awhile—spammers got to it and it had to be rebuilt. Thank you, all of you who left comments—there are some terrific comments on this site, and I wish I had time to answer each and every one personally. I hope to have more time to give to the site, now that my semester’s over, truly a term from hell.

Keep on checking back. There are interesting new developments in the world of sleep. Maybe some of them will even translate into therapies we can use…as I found out at the conference I just got back from….

“Studying Insomnia,” Nature Medicine, 15, 481, 2009

http://www.nature.com/nm/journal/v15/n5/full/nm0509-481.html

“This book is written with clarity, empathy and knowledge. Carefully collected and updated scientific data are intermingled with experts’ opinions and patients’ reports. The result is an intriguing journey into the objective and subjective worlds of insomnia and insomniacs, a ‘combined view’ that makes the book unique….

INSOMNIAC will be of considerable interest for those looking for a comprehensive and well referenced book on insomnia. Both patients and sleep specialists will find information, inspiration and consolation from the unique perspective of an author, an insomnia sufferer herself, who seems to know more about insomnia than do many physicians who care for the people with this disorder.”

…to the sleep meetings, that is, SLEEP2009, Seattle. (No, not to sleep, not at a conference— I was as sleepless in Seattle this year as I was in 2002, as I was all the other years… this is my 8^th annual sleep conference.)

But there’s been some progress since 2002. There’s more recognition that insomnia may be a risk factor for depression. The old story was, you had insomnia because you were depressed. Now there’s some understanding that you may be depressed because you have insomnia. (It’s nice to see science catch up with common sense.) And there was more discussion of the neurophysiology and genetics of insomnia, which is great, because that’s where I think the breakthroughs will come from.

POSSIBLE THERAPY?

Eric Nofzinger at University of Pittsburgh has been doing neuroimaging studies that find that insomniacs’ brains are metabolically very active during sleep, working overtime—no surprise to those of us who live with the condition. He and his colleagues tried putting a cooling device on the scalp, and 5 out of 8 insomniacs showed reductions in brain metabolism and a faster drop in core body temperature around the time of sleep onset (a temperature drop is necessary for good sleep). 75% of these subjects reported sounder and more refreshing sleep.

Granted, this was only 8 insomniacs and not all of them responded, but it might be worth a try. I wonder about those cooling caps for chemotherapy, designed to prevent hair loss (since cooling slows metabolism). That might be a way to go. Or, try wearing an icepack to bed! Can’t hurt…

http://www.medicalnewstoday.com/articles/153772.php

NEW MEDICATIONS in the works…

The mainstay medications most of us take, like Ambien, Lunesta, Restoril, work on the GABA system, the inhibitory neurotransmitter of the brain.

· A new medication will target the hypocretin/orexin system, the wakeup neurotransmitter narcoleptics have too little of. It may be that insomniacs have too much of this, or too active a system, and damping it down will give us better sleep. An expert I talked to thought it might be more “natural” than the knockout current remedies provide; he says it may be on the market in 4-5 years. Another said, “yuck, induced narcolepsy.”

· Another drug, eplivanserin, works on the 5 HTT, serotonin receptor. This has been in development for awhile; I’m not sure what’s taking it so long to get to market…

· And there’s also a new version of an oldie but goodie that seems close to FDA approval, zolpidem in nasal or sublingual (under the tongue) forms, for faster acting, middle of the night usage. I’m interested in this, since middle of the night is when I usually take zolpidem.

http://drugdiscovery.pharmaceutical-business-review.com/comment/transcept_intermezzo_accepted_for_review_by_the_fda_231208

NIGHT EATING SYNDROME

… is when you consume half your calories after 8 PM. I heard a paper that reminded me how bad this is for sleep, how it destabilizes insulin and hormonal balances, especially the stress hormones and hunger hormones, and makes for frequent nighttime waking.

http://en.wikipedia.org/wiki/Night_eating_syndrome/

They have a support group, unlike insomniacs:

http://www.mdjunction.com/night-eating-syndrome

Hearing about the dangers of night eating reminded me of an email I got from a guy was certain his sleep was screwed up by the supplement Juvenon—and it never did return to normal. Supplements can be scary, as I wrote in INSOMNIAC—red flag this one! After many a trial and error, he’s found that the only way he can get any sleep at all is by skipping dinner. He emailed me:

Russians have a saying to the effect that one should “eat breakfast yourself, share lunch with a friend and give dinner away to your enemy.”  The link is http://english.pravda.ru/society/family/26-03-2006/77863-eat-0

On the other hand, there are people who find a big plate of pasta soporiphic. Me, I know I’m better off when I stop eating 3 hours before sleep. Now if I could only kick the after-dinner popcorn habit….

Speaking of kicking habits, I gave up drinking, May 2008. Reading over my blog from New Year’s Eve 2007, I have to tell you, the champagne days are over. Even the wine glass in the author photo is out of date. I wish I could tell you it’s transformed my sleep, but it hasn’t. It has maybe made my sleep a little bit better, kinda, sorta; but I was hoping for more. So alcohol goes on that long list of things that can make sleep worse, though giving it up doesn’t seem to make sleep better. Go figure.

WAGES OF WAR

There were a few papers at this conference about soldiers’ sleep, or lack thereof. Guys come back with PTSD or traumatic brain injury, both of which are disastrous for sleep.

Prazosine, 2-5 mg., seems to help sleep and reduce nightmares. I have no idea what else it does, what side effects it has; and when you stop it, the symptoms come back.

http://en.wikipedia.org/wiki/Prazosin

Imagery Rehearsal Technique, a way of rewriting your dreams, sounds like a more effective long-term therapy.

http://pn.psychiatryonline.org/cgi/content/full/36/18/23

Also, I’ve read that people who learn to do lucid dreaming can sometimes rescript their nightmares.

DREAM ON…

Speaking of dreams, there was hardly anything at this conference about dreams—and there has been hardly anything about dreams in all the years I’ve been going to these meetings. At the one dream presentation I found, the speaker began by commenting that nobody’s working on dreams anymore, except for nightmares related to PTSD. He said he gave a questionnaire to his patients, asking whether they make use of their dreams in their life. Very few said they did, and those few tended to be involved in creative work: writers, screenwriters, actors had the highest dream recall and made use of their dreams.

What I want to know is: do creative types remember their dreams because they’re creative, or are they creative because they remember their dreams? If creativity is linked to dreaming, then it seems sad and a little risky to lose our dreams. We’re a society that doesn’t have much use for dreams. Everyone prides themselves on how little sleep they need: who needs sleep, who needs dreams? I need them. I hate it when I go long periods of time without remembering my dreams, as happens when my life’s too busy or when I take too much sleep medication.

On the other hand, I know perfectly productive and highly creative people who have no converse with their dreams. Go figure…

“Study links primary insomnia to a neurochemical abnormality in young and middle-aged adults. The study is the first to show a specific neurochemical difference in the brains of adults with primary insomnia.”

At last! I knew it, I said it in INSOMNIAC: insomnia is not (necessarily) about psychopathology, it’s about neurophysiology I always knew there was some neurobiological/neurochemical difference between me and people whose sleep comes down like a black-out curtain, sweeps them under like a wave. Here’s what I wrote:

“What if, in the not too distant future, people are saying, ‘we used to think insomnia was [about habits, attitudes, psychopathology]… but we now know there’s too little of a crucial neurotransmitter, some substance that’s not being produced… some glitch in the brain’s extraordinary circuitry that leaves insomniacs without the neurological wherewithal to transition to or maintain normal sleep’?”

I knew the research would bear this out. I didn’t know how soon.

John Winkelman, lead researcher, says this “may increase the legitimacy of those who have insomnia.” Yes, it will! Very exciting research! Go, Winkelman!

Check out these links:

http://www.eurekalert.org/pub_releases/2008-11/aaos-slp102408.php
http://www.bio-medicine.org/medicine-news-1/Study-links-primary-insomnia-to-a-neurochemical-abnormality-in-young-and-middle-aged-adults-28481-2/

As an insomniac, I’m often asked, “what do you do when you wake up in the middle of the night —get up and work?” Work? Ha! People have this notion that insomnia gives you all this extra time to get things done. No way. I’m braindead on 2-3-4 hours sleep.

Experts tell us to get out of bed, go to another room, and do something else. But it’s depressing to out of bed in the middle of the night, and not all of us have a comfy extra room to go to. Besides, if I get up and start doing anything, if I even turn on a light, it wakes me up more and destroys all chances of getting back to sleep. But the experts are right, lying in the dark listening to the sound of your wheels spinning is no good, either. I may wake up without a thing on my mind, but if I lie there long enough, my mind will find something, and at that hour, it’s not likely to be good.

So I reach for my walkman and earphones and put on a book on tape (and I do mean tape, not CD or iPod, which are useless for this kind of listening). Just knowing there’s a novel or memoir to listen to makes the waking less grim. Some of these books are so marvelously performed that they become like a theater in my head. Worlds open up, scenes play themselves out, and since my day job is teaching literature, it’s a way of keeping up. But more than useful, it’s a pleasure, and sometimes even a way of getting back to sleep.
Listening to books may work as well those punishing measures sleep experts advise. Research suggests it does. One study instructed subjects who couldn’t fall back asleep after 10 minutes to sit up in bed and read or listen to the radio or watch television. It found that their sleep was significantly improved after four weeks and remained better a year later—and they didn’t have to get out of bed. The key was, they got their minds off their own thoughts. I prefer listening to reading because it lets me stay under the covers, warm, snug, and in the dark, which keeps the melatonin and other restful hormones flowing.

But it’s not easy to find a book that’s good for sleep. It takes just the right kind of story, interesting enough to engage the mind but not so interesting that I need to stay awake to see how it comes out. No pageturners or cliffhangers, nothing too exciting (Seabiscuit got transferred to the car). Nothing with violence or physical awfulness. But it can’t be boring, or my mind slips back to my own story. The reader must have a soothing voice and not rush through. And no shouts or songs or that dumb mood-setting music—that startles me awake. Those tapes get moved to the car, or ditched, if the music’s obnoxious enough.

Novelists who work especially well for me are Jane Austen, Anita Brookner, Penelope Lively, Ian McEwan. Memoirs work beautifully because they’re not plot-driven: Nuala O’Faolain’s Are You Somebody? Russell Baker’s Growing Up, Alexandra Fuller’s Don’t Let’s Go to the Dogs Tonight. The language is interesting, the characters are engaging, and if I fall asleep and miss a scene, I just wind the tape back the next night and find where I left (which is why tapes are better than the new technologies). If the writing is good, I’m happy to listen again.

I get to know some of these books quite well, though in a lopsided sort of way: the first part of a tape, I hear over and over; the last part, I may never hear at all. My friend Carol Neely listens to books to sleep by, too, and we’ve talked about writing blurbs: “this book is great for putting you to sleep.” It doesn’t sound like a compliment, but it is. It means the book is sufficiently interesting moment to moment to keep the mind engaged, so you’re not hanging on to find out what comes next. Carol loves biographies, Doris Kearns Goodwin’s Franklin and Eleanor and David McCullough’s Truman— “they go on forever,” she says, “they’re well written and interesting and you know how it turns out, so there’s no suspense.” But there are so many different kinds of things recorded— histories, romances, inspirational— that there’s something for everyone.

Eric Zorn, columnist for the Chicago Tribune, uses cassette recordings of talk-radio programs to fall asleep to. “I find those meditation thingys very distracting—‘think of a peaceful beach…’—and too much work. Try something that truly takes your mind away, like a big screaming match on immigration or abortion or gun control.” He says, “I try to pay attention the conversation, follow it carefully, engage in the topic. The next thing I know it’s morning and I am rested and refreshed.” A respondent to Zorn says, “Nature programs work, too. I have a tape about backyard birdwatching that I’ve never seen more than five minutes of.” One man swears by the Golf Channel. Not me: I need a story.

I’ve scandalized purists, defending listening like this—an English professor, letting down the cause of reading! But I’m not letting it down. Western literature began as an aural form, with Homer reciting The Iliad. Shakespeare’s plays were written for the stage, not the page— most of his audience didn’t even know how to read. Surely it’s the prejudice of a print-bound culture to imagine that reading is superior, when aural forms have this long and illustrious tradition, and the sounds and rhythms of words have a far more elemental power than print on a page.

“There’s not a parent who doesn’t know the value of a good snoozy story to help lull the little ones to sleep (or make that cranky transition a little easier),” writes a New York Times reviewer of children’s books. It’s a primal pleasure, being read to—it evokes what Anne Lamott calls “the listening child.” I’m hooked—and it’s a technique for coping with insomnia that I can recommend unequivocally. It can’t hurt you, unless you blunder onto a page-turner and lie awake all night to find out who dunnit; then you’ll curse me. Otherwise, it’s harmless; no side effects.

Let other people be bookworms, I’ll be a tapeworm. (I wish I could claim that line, but it’s David Sedaris’. Can’t tell you where he said it, though—I heard it on tape.)

  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.