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Sleep Starved: A site by insomniacs and for insomniacs who are looking for something new…
Aug
25

Why I wrote INSOMNIAC

  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.

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15 Responses to “Why I wrote INSOMNIAC”

  1. spoceta

    Hello,
    I think that what you are doing will be good for many people with insomnia. I have mentioned our blog on my blog, at:

    http://www.revolutionhealth.com/blogs/stevepocetamd/insomnia-blog-15612

    Good luck. -Dr. Poceta

  2. Locan

    Thank you for keeping this page. For someone suffering from insomnia and its effects on health and awareness during the day it is nice to know that we are not alone.

  3. borntired

    i no longer wonder why i’ve wasted my life trying to stay awake, it’s inherited in my case. both parents have some form of insomnia/sleep disorder and all 3 siblings sloth thru their lives almost as tired as i am.

    so i bot insomniac, and am highlighting almost the entire book! i hope to finish it before my next visit with the neuro/sleep doc, but explaining how much i have realized about my various sleep/wake disorders won’t faze him, he can only document what the electrodes allow him to document.

    boy, i totally agree with gayle about how prehistoric sleep/wake medicine and research is! but thanks for writing the book, at least we understand why we are the way we are and why so much of our lives has been wasted. it is better to know than to keep on wondering and not knowing.

  4. Autumn

    I am about 30 pages into “Insomniac”, and have skipped ahead a little. I am amazed at the similarities between my insomnia and the cases presented in the book.

    It is refreshing to see that some people truly “get it”. Unless you have experienced chronic insomnia, you have no idea how awful it is and how much it affects your day to day life.

    Armed with a cocktail of .5mgs of Klonopin, 6mgs of melatonin, and a joint or two of marijuana at night, I am able to get some decent nights of sleep. -Though I do still have have bad nights about 25% of the time. (This includes the awful few days before my period when I’ve been known to get as little as two or three hours even with my cocktail.)

    Some people may call me a pill popper or druggie, but to me, it is no different than taking meds for diabetes, heart disease, ect. More people need to recognize that insomnia is a disease which sometimes needs to be treated with medication.

  5. jakie

    I feel I’m intruding here as I sleep exceptionally well myself, but the odd bad night (2 or 3 times a year) leaves me feeling lousy nbyond belief so I have huge sympathy for you poor insomniacs. One thing that really strikes me about these ‘experts’ on insomnia: they never study people like me who sleep well no matter what, but instead their subjects are always those who are suffering from insomnia. Hence they are full of these useless tips about no alcohol, hot milk, etc.which peole like me just fiod laughable. In my opinion, sleeping well is a genetic or congenital condition and very few things can affect it. Mental state: my mother, who suffered from bad depression all her life, nevertheless slept so well that durimg the war she slept through bombing raids and had to be woken up to get to an air-raid shelter. I have been the same all my life: as I have got older, only the occasional painful illness or airport delays cause me sleepless nights. Have slept through fire engines int he street outside. Sometimes I feel quite callous as I sleep quite normally through any family upheaval or disaster. I love going to sleep, though often have nighmares and talk in my sleep - but it is a profound experience and I am sorry for anyone who cannot access it.But why am I telling you poor guys this? Because of all those silly bits of advice you get given. Don’t be fobbed off with all those magazine articles. In my view, it probably is a chemical difference and sleeping tablets may be the only answer, so persist till you get something that really helps. Stuff the cocoa! And good luck!
    All the best, Jakie

  6. ChristinaL

    Wonderful to read what Jakie has to say. As someone who has been insomniac to various degrees throughout my life (usually having terrible trouble getting to sleep), I’ve known for some time that all those magazine articles about hot milk, baths, avoiding alcohol etc are meaningless and a waste of time. It’s nice to have this acknowledged by a good sleeper, as so often insomniacs are made to feel by doctors and those who sleep well that they’re just not trying hard enough, must be doing something wrong etc.

    Me, I’m convinced there’s a chemical difference. I always had trouble falling asleep, but when I started taking the contraceptive pill my sleep got a whole lot worse. Then stopped taking it for 18 months and slept quite well for most of that time. Started taking it again and had the worst insomnia of my life - went through absolute hell on earth getting 0-2 hours sleep every night for 3 months. Felt myself on the brink of insanity, stopped taking it and my sleep improved within a couple of weeks.

    I wish to god that the scientists would look at the effect of hormones on the neurotransmittors in the brain. Instead of the same useless advice about alcohol/caffeine/exercise/TV in the bedroom etc etc. Because, as Jakie says, good sleepers can break all these rules and a hell of a lot more and it make no or minimal difference to their sleep. Why is this? There is still so much more to find out.

    Gayle - don’t know if you read all the comments on this site, but I absolutely LOVED your book. I’ve never read a book that has been so important and meaningful for me. I lost count of how many times I quoted it excitedly to my boyfriend, saying ‘This is how it is! Someone else actually gets it!’ The chapter about the sleep conferences were laugh out loud funny too. It was a comforting book, but also a rousing one - it made me feel politicised and angry about how we insomniacs are treated by the medical community. It really is time someone started listening to us and taking us seriously. I hope that your book has started the ball rolling.

  7. kpanton

    Gayle, I would like to sincerely thank you for writing this brilliant book. I was tempted to “raid” the book (at your suggestion) but found it so engaging I’ve read it from cover to cover (well almost - just 50 pages to go!). It’s a marvel that you’ve made this dry topic such a fun read! You have left me with such a strong sense of validation, and of hope, that I have ordered a stack of copies for the other insomniacs in my family.

  8. Shannon

    Gayle: I too would like to thank you for writing such a fabulous book. As many others have mentioned, I want to read it aloud to everyone in my life who does not understand what I have gone through for 15 years, and who suggest drinking warm milk, having a bath or those other suggestions of non-insomniacs, including doctors, who just don’t get it.

    I force myself not to insist that non-insomniacs read the book, or at least listen to me quote from it, because I worry constantly that I am boring people to death talking about how tired I am and how awful i feel.

    Just knowing I am not alone with this dreadful condition is helpful. So many parts of the book hit home, for example the things that if you do to excess destroy your sleep (eg alcohol) but if you give it up entirely you still don’t sleep. I feel I have given up everything pleasurable (chocolate, alcohol,caffeine) in a desperate attempt to sleep, and with them I do sleep worse, as Gayle said, but without them I don’t sleep any better.

    I just cannot express enough how I impressed I am that a chronic insomniac could write a book like this. I am constantly told by my boyfriend, family and doctors that I obsess over sleep and need to stop thinking about it. It is true, however impossible not to obsess over what the night will bring when you have been an insomniac for this long. To actually write a book about it, which obviously means going beyond obsessing about the subject, is mindblowing to me.

    I never thought that I would say an insomnia book was one of the best I have ever read, but I have now read and re-read the book several times because it is so well written.

    As someone else said on this site, given that an entire book was written about the subject, I find it incredible that I do not personally know anyone who has this problem other than myself, which is why the book was such a relief to me.

    Even though there is no miracle cure it is good to know I am not alone

    I also appreciate the comment from the lady who says she is a great sleeper…takes a lot of guts to join this site…your comments were great and I thank you for being so understanding when you do not suffer from the problem.

  9. dodo

    I am intrigued by the idea that neurotransmitters might play a role in sleep patterns and disorders. What I’m wondering is this: what do you know or think about the impact of food/diet/nutrition on neurotransmission and sleep? I saw some comments about how the time and amount of food we eat might impact sleep, but do you think the KINDS of foods we eat might also make a difference? What kinds of food might enhance sleep?

  10. Hi everyone - I have had insomnia for over 40 years and was being treated by a psychiatrist, but for only 20 minutes - medication only and then if I need to talk I talk to a psychologist NOT HIM. So,anyway I had enough of this and went to another psychiatrist. She prescribed lamotrigine for me which is an antiseizure medication and goes up to a maximum of 400 mg - however, it is also used as a mood stabilizer. I told this doc when I don’t sleep I get so nervous and have so much anxiety the next day and therefore the more I go without sleep the more anxiety I suffer - I have been on Ativan on and off for many years, but as you know it is very addicting and after a while you have to up the dose for it to be effective. She was shocked that no one ever gave me this medication - it has been out since 1984. It is generic for Lamictal and costs me nothing - insurance pays for it. Anyway I have been on it for almost 2 months and feel great and am calm every day no matter what happens to me in that day. I was started on 25 mg and now take 50 mg. It goes up to 400 but don’t think I will go much higher - maybe 75 or 100 mg but think that should do it. By going up slowly with the dosage it almost guarantees you wont get a rash but like I said is very rare. I am a hyperarousal personality and the dr said this will calm me down. There are no side effects and you do not need to check your blood plasma either. The only big side effect and your pharmacist will tell you about the rash - if you get the rash you stop and you are fine. However, my doc told me it is VERY rare to get this rash and also told me that 2/3 of her patients are helped with this drug. I wanted to share this with all of you and ask your doctor about this medication as I think it can help all.

  11. Ann

    I am a lifelong sufferer. Every few years I try again to find the “cure”. As I’ve gotten older I am more patient with lying awake, and less patient with the “brain fog” I experience all day-everyday. Does it make sense to stop worrying about sleep and fix the “brain fog”? Maybe treating those symptoms once and for all will automatically lead to better sleep, because the underlying problem has been addressed?

  12. John

    Against the advice of professionals, but I find sometimes a peanut butter sandwich at 1am or 3am if I wake up seems to do the trick for me.
    Parhaps I am not a classic insomniac.
    But it usually works for me.

  13. joe

    i try not to take sleep meds *ambien or lunesta) and then i am awake for 24 or 48 hrs and its horrible sometimes i have crying anxiety spells between midnite and 6 and realize some of us arent all on the “regular cycle” of life so i am grateful for the meds as they get me there but later than i;d like theres a long delay but i would seek out marijuana possiby in austin tx if i cold get it havent used it in over 30yrs but believe in its possibilities having seen a medical marijuan documentary

  14. What a great site. I’ve always believed that when you have something that works for you it could very well work for others and therefore it should be shared. With that exact sentiment in mind I wrote a book called Peaceful Tales - Bedtime Stories for Insomniacs and Anyone Else Who Has Trouble Falling Asleep. It is something that I came up with over the course of many sleepless nights and a lot of note taking during the wee hours. It’s three short stories that use only positive feedback and imagery.

    After doing many nights of alpha testing on myself I added additional spots where I slow it way down to further encourage the mind to “let it go”. I feel that the stories take the place of all the worries that we all take to bed with us. You simply can’t worry as you are being walked through a lovely forest (first person) on a perfect day and letting nature fill you mind with beauty.

    I have suffered from insomnia all my life and been on sleeping pills, anti-anxiety pills, and every natural sleep remedy I could get my hands on - they all stop working after a day, a week, a month. The beauty of the bedtime story is that they greet you each night like an old comfortable friend. I’m now off all my meds and even if I don’t fall right to sleep at least I feel peaceful and way less stressed out.

    The audio version of my book is on Audible.com, iTunes, and Amazon. I hope it brings others the peace that it has brought me. It was written with love and intention - and, I think it shows through.

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