"Confessions of an angry insomniac"

Discussion in 'Fibromyalgia Main Forum' started by tansy, Nov 30, 2008.

  1. tansy

    tansy New Member

    Gayle Green hasn't had a good night's sleep in 50 years. And yes, of course she's tried hot baths and warm milk...

    The Independant on Sunday, 30 November 2008
    Robert Yager

    A waking nightmare: Green urges doctors to take insomnia more seriously

    The first thing to go is your sense of humour. Then it's the desire to do the things you used to do, and then the desire to do anything at all. Parts of your body ache that you don't even know the names of, and your eyes forget how to focus. Words you once knew aren't there any more, and there's less and less to say. People you once cared about fall by the wayside and you let them go, too.

    I can't remember when it began for me. What I do remember is the following scene, played out at various times throughout my youth: "But I can't sleep!" I'd protest as my parents tried to wrestle me into bed at what they called a decent hour, meaning any time before 1am. "Nonsense," my father would say, "everyone knows how to sleep. Even animals know how to sleep. Just close your eyes and relax – you'll get sleepy. It's the most natural thing in the world."

    It was "natural" for him, that sleepiness he'd describe as a curtain that swept down, but it was never natural for me – not then and not now, five decades later. At 65, I sleep two, three or four hours and then my body thinks it's time to start a new day. There are people – such as Margaret Thatcher and John Major – who can do well on so few hours' sleep. But not me.

    On such small amounts of sleep, I can't work, think or string words together to make a sentence and my mood hits the wall. I'm not alone with this problem: a third of people in industrialised nations complain of poor sleep – and according to some reports, Britain's rates are the highest. I'm one of the lucky ones, since I can structure my work hours: I'm a professor, which means I can schedule classes late and do my writing on my own time. When you have to be up early and on-task, chronic insomnia can be a career killer. Studies show that insomniacs have trouble getting jobs, keeping jobs and getting promotions. "There's a built-in glass ceiling for people with severe sleep disorders," a psychiatrist friend told me.

    The writer and comedian David Baddiel, in one of his stand-up routines, asks why, when he tells people of his insomnia, they say, "'Really, cos I fall asleep the second my head hits the pillow': when I see someone in a wheelchair, I don't say, 'Really, cos I can do this...'" and he hops around the stage on one leg. Sleep is as essential to our survival as eating, drinking or reproducing. But it's not taken seriously, even by the doctors we turn to for help, or our closest friends and family. "Nothing wrong with you except you can't sleep," a doctor once told me. I didn't know whether to laugh or cry. I tried to imagine his saying, "Nothing wrong with you except you can't breathe."

    Sleep in a dark, quiet room, make sure you have a comfortable mattress, keep a regular sleep schedule, cut down on caffeine and alcohol: these are the things we're told. All very well, but what kind of an idiot would I have to be, to have lived with this problem all my life and not known these things? I have tried these things, and many others besides. I've lathered myself in sesame oil, brewed a Chinese herbal tea so foul that my dog fled the kitchen as it steeped. I've driven miles to a "sleep guru". I've tried valerian, kava kava, chamomile, skullcap, L-tryptophan, Lustral, trazodone, most of the benzodiazepines, and pills whose names I never knew. I saw a psychologist (she was terrific on my love life but hadn't a clue why I slept so badly or what I should do about it). I've tried acupuncture, biofeedback, meditation, hypnosis, melatonin, Ayurvedic treatments, adrenal support supplements, bananas by the bunch, St John's wort, yoga and swimming three to four miles a day. I've worn a magnet necklace. Not one of them has "cured" me.

    So, around seven years ago, I set out to find some explanation why, being of sound mind and reasonably untroubled life, I still can't sleep. I wanted to know what the scientists know. I travelled to conferences where researchers, doctors and sleep professionals gather to exchange the latest information – I learnt that insomnia is, of all the things that can and do commonly go wrong with people, one of the least well understood.

    In the US, which pioneered sleep research and leads the world in funding for the disorder, the National Institutes of Health spent $20m on researching insomnia in 2005. Sounds a lot, but that same year, the pharmaceutical company Sanofi-Aventis spent $123m advertising its sleeping pill, Ambien. I found, even in the world of sleep research, that same neglect and trivialisation of the problem I've encountered all my life.

    I learnt that insomnia receives so little funding because it is not seen as life-threatening: "Nobody ever died of insomnia" is one of those things we often hear. Well, we may not drop dead of it the next day, but sleep loss compromises the immune system and puts us at risk of diabetes, obesity and heart attack. It makes us old before our time. But it's easier to blame the patient, to tell us that we're anxious, depressed or doing something to bring it on ourselves, than to do the hard research that would lead to an understanding of the cause.

    I also wanted to find out what insomniacs themselves know – and none of the many books I'd read on the subject had bothered to ask. So I tracked down everyone I've ever heard of or know who has insomnia – friends, friends of friends, relatives of friends, acquaintances, colleagues, students. I talked to taxi drivers, bartenders, strangers on planes and in queues. I placed adverts in local and national newspapers and on websites. I spent many late- night hours surfing blogs and newsgroups.

    I can't say that I sleep any better now than when I began writing my book, but I have found many consolations along the way. I've discovered that the research is moving my way, turning up evidence that insomnia is in our neurobiological and genetic predisposition rather than something we're doing wrong.

    And it's felt good to break the silence on this issue, to come out of the closet and say, look, this is a serious problem that is making millions of people miserable and is putting us at risk. It's not something that goes away with a hot bath or warm milk. It needs to be taken seriously, by doctors, researchers, friends, family and employers.

    Adapted from Gayle Green's book, 'Insomniac' (£12.99, Piatkus)

  2. jasminetee

    jasminetee Member


    Thanks for telling us about this book. I went over to Amazon and read the reviews. It sounds like Insomniacs face the same kind of discrimination within society and the medical profession that we do. It's good to see the author get this book out there and her willingness to confront the medical world head on.

  3. tansy

    tansy New Member

    American Academy of Sleep Medicine

    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

    Westchester, Ill. — A study in the Nov. 1 issue of the journal Sleep is the first demonstration of a specific neurochemical abnormality in adults with primary insomnia, providing greater insight to the limited understanding of the condition's pathology.

    Results indicate that gamma-aminobutyric acid (GABA), the most common inhibitory transmitter in the brain, is reduced by nearly 30 percent in individuals who have been suffering from primary insomnia for more than six months. These findings suggest that primary insomnia is a manifestation of a neurobiological state of hyperarousal, which is present during both waking and sleep at physiological and cognitive levels.

    "GABA is reduced in the brain of individuals with insomnia, suggesting overactivity is present not only at the level of excessive thoughts and emotions, but can also be detected at the level of the nervous system," said principal investigator Dr. John Winkelman of Brigham and Women's Hospital, which is a teaching affiliate of Harvard Medical School in Boston, Mass.

    GABA decreases overall activity in many brain areas, helping the brain to "shut down." Having a "racing mind" and an inability to shut down at night is a common complaint of people with primary insomnia.

    Chronic insomnia, or symptoms that last for at least a month, affects about 10 percent of all adults in industrialized countries and is the most common sleep disorder. Most often insomnia is a "comorbid" disorder, present with another medical illness, mental disorder or sleep disorder, or associated with certain medications or substances. Approximately 25 percent of people suffering from insomnia are considered to have primary insomnia, which is defined as a difficulty falling asleep or maintaining sleep in the absence of coexisting conditions.

    According to Winkelman, the recognition that primary insomnia is associated with a specific neurochemical deficiency helps validate the often misunderstood complaint of insomnia.

    "Recognition that insomnia has manifestations in the brain may increase the legitimacy of those who have insomnia and report substantial daytime consequences," he said. "Insomnia is not just a phenomenon observed at night, but has daytime consequences for energy, concentration and mood."

    This preliminary study included 16 participants (eight men and eight women) who were screened to be free of medical and sleep disorders, as well as anxiety and mood disorders, and who were not taking prescription medication. Ages ranged from 25 to 55 years. Researchers recruited people who had difficulty initiating or maintaining sleep with resulting daytime distress or dysfunction for a period of at least six months. The average duration of participants' symptoms was 10 years. Objective data were collected by actigraphy and overnight polysomnography. Proton magnetic resonance spectroscopy (1H-MRS) was used to non-invasively determine GABA levels. For statistical comparison the study included a well-matched control group consisting of seven women and nine men.

    Significant correlations were found between GABA levels and both subjective and objective sleep measures after adjusting for age, body mass index (BMI) and gender. In subjects with primary insomnia, sleep continuity, as measured by minutes of wake after sleep onset (WASO) on sleep study, was strongly associated with GABA levels.

    According to the study, reductions in brain GABA levels also have been observed with 1H-MRS in major depressive disorder (MDD) and anxiety disorders. Primary insomnia shares many features with anxiety and depressive disorders, including sleep disturbance, elevation in anxiety, and impairments in concentration and energy. In addition, primary insomnia is an important risk factor for incident mood and anxiety disorders. The study raises the possibility that GABA deficiencies seen in people with mood and anxiety disorders may be based on disturbances in sleep.

    The study also reports that many of the hypnotic medications that are most effective in treating insomnia are benzodiazepine receptor antagonists (BzRAs), which increase activity at the GABA neurons. According to a new clinical guideline for the evaluation and management of chronic insomnia in adults, which was published by the American Academy of Sleep Medicine in the Journal of Clinical Sleep Medicine, hypnotic treatment should be supplemented with behavioral and cognitive therapies whenever possible.

    A media fact sheet about insomnia is available from the AASM at http://www.aasmnet.org/Resources/FactSheets/Insomnia.pdf, and information for patients and the public is available at http://www.sleepeducation.com/Disorder.aspx?id=42.

    Sleep is the official journal of the Associated Professional Sleep Societies, LLC (APSS), a joint venture of the American Academy of Sleep Medicine and the Sleep Research Society. The APSS publishes original findings in areas pertaining to sleep and circadian rhythms. Sleep, a peer-reviewed scientific and medical journal, publishes 12 regular issues and one issue comprised of the abstracts presented at the SLEEP Meeting of the APSS.

    For a copy of the study, "Reduced Brain GABA in Primary Insomnia: Preliminary Data from 4T Proton Magnetic Resonance Spectroscopy (1H-MRS)," or to arrange an interview with an AASM spokesperson, please contact Kelly Wagner, AASM public relations coordinator, at (708) 492-0930, ext. 9331, or kwagner@aasmnet.org.

    Principal Investigator Contact Information:
    Dr. John Winkelman, MD, PhD
    Brigham and Women's Hospital
    Harvard Medical School
    1505 Commonwealth Avenue
    Brighton, MA
    Telephone: (617) 783-1441
  4. quanked

    quanked Member

  5. when she said-

    What is one of the military's oldest forms of 'torture', for POW's?

    SLEEP DEPRIVATION- torture- sleep deprivation, until the person is so exhausted, disoriented, hurting, delerious (SP) that they will say ANYTHING, to finally get some SLEEP.

    I have suffered from 'bouts' of insomnia, since I was a child- I can vividly recall times that my mother would come to wake me for school... and I would *immediately* burst into *tears* crying, "mom, I JUST fell asleep!"

    Even my own mother, assumed that I, being a 'teenager' was just trying 'another excuse' to not have to go to school..

    Now, though, looking back, she feels *tremendous* guilt (which I wish she would not have.... I by NO means, was an easy child/teenager) but, she looks back NOW, and sees, that I have been sick, nearly since I was born... she feels terrible for listening to school, teachers, principals, advisors, and even my own stepdad, who all had labeled me, just another slacker/bad kid...

    I, as I said, wish my mother could let go of her guilt, but, with both of her children, she'd prayed for so hard, and tried for 8 years to have, are both sick, along with her entire surviving siblings, etc... she has fibro too, and the guilt, & stress over things that happened 20 yrs ago, worry ME, because of how stress is affecting HER fibro/diabetes, blood pressure, & other illnesses she has.

    But, even of all the ways I had always thought of insomnia, & tried to explain it to doctors, telling them pain = insomnia, which = *more* pain, which causes *worse insomnia, etc. how the cycle just goes round, and gets uglier & uglier...

    They understand that also, but, when my mother pointed out, that the *military* uses 'sleep deprivation' as a form of *torture*.... I was just.... (???) blown away... realizing how right she was, and, realllllly realizing the implications of it, in a whole new way..

    POW's, are often otherwise 'healthy' people- and we know the results that kind of 'torture' had on *them*... no wonder WE are such dysfunctional wrecks!

    Thanks for the article!

  6. TeaBisqit

    TeaBisqit Member

    When I was in college, I had insomnia so bad that I used to have to workout for hours just to physically exhaust myself and then I'd still have to take tons of benadryl to sleep. I literally lived off benadryl for years. I believe the insomnia was just another part of this disease. I was in a weird quasi remission where I was half functional. I went to college part time because I couldn't go out everyday. But I was much, much better than I am today. I was able to workout. I was able to have half a life. Once I caught the final thing that completely disabled me, the insomnia kicked in to where I couldn't sleep at all, not even for a minute. It was pure hell on earth. As time when on and I took tons of LEM (shitake mushroom extract), my sleeping got better. But it took YEARS till I could sleep for several hours at a time.