A personal view
I never get that drowsy sleep-coming-on feeling
I think, in general, that I slept well when I was young. I could never sleep during the daytime but didn't consider that a symptom or sign of anything to worry about. Once, when I was about 14, I had a bout of sleepless nights after which my mother took me to the family doctor's. Mild anaemia was the diagnosis, the anaemia was treated and the insomnia and tiredness gradually subsided. From my late teens until the onset of my Insomnia Proper, I would have transient periods of sleeplessness brought on by peaks and troughs in my love life but I considered that to be perfectly normal in the circumstances! Any use of sleeping pills was short term and easily abandoned. One personality trait which may be relevant to the overall picture was the tendency to internalise the sufferings of others: animal and birds as a child extending to humankind later on. Accordingly, one of the teachers at my secondary school advised me not to plan a career in medicine or social work. In the event, I qualified as a primary school teacher. Now, after 18 years of chronic insomnia, I'm convinced that the predisposition to the disorder is partly genetic: so many people of my acquaintance are "sensitive", "worriers", like myself, but manage to sleep like logs.
Insomnia started with a vengeance
In September, 1979 (in Finland, to where I had emigrated in 1970), I gave birth to my first, very welcome, child. That stage in my life was a particularly happy one in every way, so there are no clues there as to the future troubles! During the pregnancy I had tried in vain to take those afternoon naps that antenatal clinic staff always encourage one to take but wasn't unduly concerned: I slept well at night.
After the nighttime birth itself, I didn't sleep at all, although exhausted, but I put that down to excitement. Also, I slept very badly during the subsequent hospital stay, with the new baby-by-bedside policy. I wasn't worried about that, being cheerfully and happily tired. It never entered my head that this would continue relentlessly into the distant future! It may be coincidental, but I did suffer from anaemia at the time, in connection with a giardia infection contracted during pregnancy while living in Abu Dhabi.
When our baby son was 6 weeks old, we left Finland for Libya, on account of my husband's work. We had seen quite a lot of the world already, I was fascinated by different cultures and was looking forward to another interesting experience abroad. I assumed that the disturbed nights with a very healthy but demanding baby would constitute a natural but passing element in the life of a new mother. Everything augured well otherwise - a challenging job for my husband in a tree-nursery project and time and space to enjoy family life. I did develop a bad cold just before our journey, but that was something to be lived through, another temporary discomfort.....
In Libya, first in Tripoli and then on the project site in the nearby countryside, everything did live up to expectations. We made friends with other families of various nationalities and found a paediatrician for regular baby check-ups. I devoted myself primarily to the development of the baby, fighting off the tiredness and irritability ensuing from the continual sleepless nights. Daily life followed a more or less regular routine, domestic duties and baby-care being accompanied by letterwriting, yoga (self-taught from a book), language-study, a correspondance course on English literature, evening jogging with my husband. I soon had to give up the correspondance course. I couldn't have wished for a lovelier baby, but he happened to be one who slept very little during the day and who demanded regular breast-feeds during the nights...On principle I had decided to breastfeed as long as the baby wanted, and didn't go along with the "Let- the- baby- cry- until -it- learns -not- to- demand- night-feeds" school of thought. Our son did, however, sleep in his own cot in his own room. All to no avail. We made some holiday trips to Europe during this time - my husband, in particular, thought the change of scenery and lack of domestic routine might help me to sleep, but the baby was always with us ! Of course, we can now see the mistakes we made. Never seeing the folly of living in hopes of a night's sleep 'tomorrow', it didn't occur to us to make the effort to find a kindly soul who would look after the baby for several nights or longer. We lived quite a distance from Tripoli, where, in fact such a person did reside, and the arrangement would have seemed radical. In my correspondence to friends and family, I emphasised all the interesting aspects of our life, and so missed the chance of someone suggesting a radical remedy. My sleep rhythm was fatally flawed. The nascent problem was compounded by the fact that I had, from quite early on, taken mild sleeping pills, Diapam, provided by a doctor friend of the family, in England. I didn't notice any side-effects and didn't know anything about drug-dependency.
Naturally enough, as with many other similar cases of insomnia, our marriage relationship suffered. My husband was engrossed in time-consuming and often over-demanding responsibility, while I was desperate for a all-understanding confidente who could somehow 'take over'. All my energy went in ensuring that our child was happy and secure and, miraculously almost, I was always able to laugh, sing and play with him. My husband was the one who had to suffer from my underlying fatigue, the nagging and irritability. He luckily realised that a (mentally) battered husband was far preferable to a battered baby. I have reason to be ever grateful for my strong maternal instinct and have sympathy with those tired mothers who are desperate enough to harm their babies.
The problems continued in Finland
When our son was 2 years old, we moved back to Finland. I enrolled for a relaxation course and had psychotherapy with an empathetic but ultimately unhelpful psychologist. I tried hypnosis. The disturbed nights continued. All this time I had thought 'This won't last much longer. When the baby learns to sleep full nights, then Ill be able to sleep better'. But now, even though " the baby" did at last sleep through the night, my nights were disturbed and always too short: our son woke up about 6 a.m. bright and ready to play. He started attending a day-care centre, which he loved, my husband returned to Libya for another year and a half, returning frequently for homevisits and I started studying, part-time at university. I was taking sleeping pills every night. Sometimes I tried to go without them but then found that I couldn't sleep at all. I knew nothing about 'rebound insomnia'.
At this point I want to say that if a woman is a poor sleeper and then happens to have a baby who keeps her awake every night, then she shouldn't just wait for things to get better. Something must be done in time! I think staff at baby clinics could enquire more about the mother's sleep welfare. On a small scale there are charitable projects in Finland nowadays to help parents out in cases like this, taking the baby ìnto care' for several nights at a time. Mothers' sleep disturbances must be taken seriously to prevent a vicious circle. When I had contacted the local Mental Health Centre for councelling on account of insomnia and consequent marital problems I was told that I wasn't ill enough! Until recently there hasn't been a 'family doctor' system in Finland, so there wasn't a natural channel for gaining medical support, and for reasons I don't understand myself I didn't actively seek serious help. Maybe my over positive 'tomorrow things will change 'attitude was a reflection of the uncomprehending reactions of friends and acquaintances who mostly commented on my energetic 'shell' as I drove myself on to be the cheerful extrovert person I was generally considered to be.
The years rolled on. The baby grew into a well balanced, happy, child. My husband lived both at home and abroad. For several years I moved to Helsinki to continue studying. Studying was one strategy to accommodate the insomnia-induced stress as the degree course system was very flexible and I wasn't inextricably committed to a regular daily timetable. I took sleeping pills the whole time, Diapam, Mogadon and then Tenox. I remember finding that Tenox enabled me to sleep sufficiently to retain energy for reading, private teaching and childcare but only by me taking another pill when I (inevitably) woke up in the night. No doubt a bad habit. But I was unaware of any side effects; anything was better than the misery of not sleeping at all. Like all insomniacs that I have since got to know I never wished to increase the dosage of medication, as a drug abuser will do. I only took pills as medicine, always returning to the prescribed dosage after periodic bouts of overuse.
At a later stage, I did fair amounts of teaching and translation work but didn't dare take the risk of committing myself to a permanent full time post. I was a free-lancer. I was amazingly successful in my academic studies, developing a arsenal of mnemonic and revision devices to combat my weakening memory skills and during one summer holiday was motivated enough to participate in an intensive TEFL (Teaching English as a Foreign Language) course in London passing with flying colours. All this was at the cost of avoiding social events whenever possible. I saw friends preferably in the intimacy of private homes, where stinging tired eyes didn't matter so much. I twice attempted to start and keep up choir singing but twice gave up.
In spite of my insomnia, I had been studying on and off within the flexible framework of the system, from 1981, and finally reached the final stages of my Master's Degree course in the spring of 1991. At this juncture, the combination of several events turned out, in retrospect, to be fatal, as far as my medical history is concerned. The economic recession, which was felt so badly in Finland affected our financial situation so much that I had to take on extra work in order for us to survive. At the same time, I realised that my powers of concentration had weakened to the extent that I just couldn't get my Master's Dissertation on Applied Linguistics completed to schedule, although all the study and research material involved was ready and the first, overview, chapter was written up.
I had previously agreed to take part in a three-month field study in Tanzania on Swahili dialects that coming autumn, accompanied by my husband and son. Severely hit by the realities of the recession, my husband's fledgling high-tech enterprise was in deep trouble and he couldn't anymore consider joining me. I knew I wouldn't be able to manage alone, so I pulled out of the project altogether.
During the time when my husband's enterprise had seemed to have a promising future, we had planned that I would cut down my own work to a satisfying minimum - just enough to fulfil my sense of vocation - but the economic climate put paid to that idea. We had no "hidden" financial resources to draw on. The additional teaching which was now offered me and which I felt obliged to take on, involving classes in industrial companies, constituted, together with established classes, no more than a teacher's average workload (around 20 contact hours a week) but it proved too much for me. There was quite a lot of bus and train travel to cope with, mental pressures increased and my nights' sleep seemed shortened still further, sleeping pills notwithstanding. No sleeping pill or tranquilliser had ever "knocked" me "out": sometimes they worked, sometimes they didn't.
The months passed and the insomnia continued. I was ostensibly energetic and vivacious, easily buoyed up by enthusiasm for this or that, but increasingly overdriven by sheer willpower. I was overactive, over conscientious, overtense, distressed by frequent lapses of memory and constantly aware of hurting eyes that fought to keep open but which couldn't get the rest they ached for! My linguistic skills, mother- and other tongues, were starting to be a major source of worry. The erosion of these and other mental abilities was so insidious: my concerns were too easily dismissed by friends and aquaintances, the majority of whom saw me very little as I cut down socialising to a minimum. The Surmontil tablets which had been, seemingly successfully, prescribed by a sleep specialist several years earlier, had gradually lost their effect by now.
Sleep in the sleep laboratory on the strength of sleeping pills
By 1993, I had gradually got myself into a critical state. On the one hand, I had challenging, motivating work and students I enjoyed working with. But the planning and preparation of individual lessons, which I was never ready to compromise on, took up more and more disproportionate time, eventually taking over evenings, late evenings and weekends. My lesson notes were embellished with all manner of detailed reminders of "routine " details to enable me to get through without panicking. At home, I was often neurotic in my behaviour, while struggling all the while to be a loving, cheerful wife and mother. Luckily, our baby, of necessity an only child, had turned out to be a well-balanced, healthy, supportive son.
One day, in the spring of 1993, a new acquaintance put me into contact with an empathetic neurologist, who referred me to a sleep disorders clinic, the only one in Finland specialised in Insomnia, for an overnight sleep test, a polysomnogram. Two months later,I was there, full of hope. I was there for two nights, the first being a getting-aquatinted-to-the-environment night. I was the only patient to be monitored, in hotel-suite-like conditions. I had not slept at all the three previous nights, subjectively speaking, since, according to instructions, I hadn't taken any sleep medication. My husband, who had driven me there assured the nursing staff that, without sleeping pills, I would probably not sleep during the following nights either. Since the purpose of the exercise was to measure my sleep pattern, I was given permission to take my regular dosage of pills. So, I had my 50 milligrammes of Surmontil and 50 milligrammes of Oxepam. I slept well in my own estimation and the eventual results of the laboratory test indicated that, apart from unusually frequent awakenings my "sleep efficiency" was "normal"! Needless to say, I was extremely disappointed with the outcome: I had no "proof" of my disorder, although I knew that neuroscience was still in its infancy.
About the Oxepam tablets - one of my friends had offered me, for emergency use, a bottle of Oxepam which had been prescribed for her alcoholic husband and which he had found too strong. During one fateful night, prior to an early morning train ride and demanding management level classes, I tried one of the pills (50mg) and it worked! So began my regular use. They were willingly prescribed anew, legitimately, by a health centre doctor and the neurologist mentioned previously.
During that summer, an alternative work pattern presented itself. My husband noticed a job vacancy ad in the local paper, looking for a qualified teacher at a nearby well-established English-language kindergarten (intended primarily for non-English speaking children). He encouraged me to apply, which I did, successfully. It seemed ideal: the school was only a few minutes walk away from our flat, I loved children and had previous experience in similar work. Each autumn, a new group of children would arrive so that I'd be able to reuse teaching material. I took my mix of Oxepam and Surmontil in the evening and at first I thought I had slept sufficiently and would manage well enough. I really enjoyed the spontaneity of the children and the company of adult work colleagues. I continued with some of my adult classes in the afternoons. I only lasted two and a half months. In spite of feeling that I´d slept at least enough hours to cope, I started to get panicky for no apparent reason at all and was in frequent fear of "freezing up" - moments when I just didn't know what to say or do. I had my back-up of detailed lesson notes and coloured memo-stickers, but when struck with brain-freezing, I didn't remember to look at the notes! I was afraid that I wouldn't be able to handle unscheduled situations, which can always occur where small children are concerned. Indeed such situations did occur and a kindly assistant took over. One morning, when I was on the verge of bursting into tears for no obvious reason, in front of a sea of eager young faces, I realised that I could no longer go on like this. It also dawned on me that, after all the years of not being aware of any disturbing side-effects of sleeping pills, they were now making themselves the prime suspect in the present crisis.
Acting on my behalf, my husband phoned the neurologist who had referred me to the sleep clinic and insisted that I needed a long sick-leave, a complete rest. Bewildered, the doctor phoned me at home to hear my side of the story, because he had understood from the initial consultation that my teaching work, as a vocation, was of the utmost importance in my life. Indeed it was, but now it was a case of my life being more important than my work! It was this neurologist who first introduced me to the term " on overdrive", when referring to my state. The description fitted the bill exactly : I was restless, panicky and needing to consume calorie-laden foods to counteract my new tendency of losing weight after a lifetime of having to control the tendency of gaining weight. In th event, I was given 2 months sick-leave, the longest period permissible in the absence of any evidence of "physical illness". I would have to consult a psychiatrist if I needed an extension of leave.
I informed the school of my state of affairs. They expected me to return, recovered, in two months' time. Somehow, I knew I wouldn't be able to return.
Through the local Mental Health Centre I found a wonderfully empathetic psychiatrist, who while confirming that I wasn't suffering from a psychiatric disorder, and admitting that he knew little about insomnia which was not brought on initially by depression, wanted to help me. Through his efforts I was granted a long break from work commitments until the following autumn, ten months in all.
It took me 7 or 8 months to wean myself gently, gradually, from those sleeping pills, first from Oxepam, then from Surmontil. What an achievement after 14 years of dependency! Sometimes I slept well, sometimes very little or not at all but I stuck it out, determined to at last rehabilitate myself and plan for a gentle return to working life, which would be based on a strategy of "easy but interesting". I was surprised that even during the pill-free period I had frequent butterflies-in-the- stomach panic feelings, quite unwarranted, and continued lack of concentration but reasoned that like alcoholic poisoning, the body would require a long "cleansing" period. Ever overposiive, I never entertained the possibility that I might have to give up any kind of normal life.
I did go back to work, this time running small English "clubs" for young children as part of a franchise-based network. Lesson notes and basic materials were provided : I wouldn't need to prepare much myself. I got on well with my local colleague; We cooperated and supported each other. Initially, I had only 4 weekly groups, extending to 7. I was full of enthusiasm, making long-term plans to involve myself with pioneering work in foreign language teaching in state nursery education... In vain. Very soon I found that I couldn't get to sleep or then maintain sleep without pharmacalogical help. I contacted the empathetic psychiatrist and embarked on my aquaintance with Imovane, first on the occasional night, then regularly every night, as the old symptoms returned in force. It seemed the work itself, not the amount of work, was the trouble. The mental energy consumed in my struggling to focus on essentials plus the self-imposed pedagogical thought and input was evidently too much, yet again.
A few months later, just before Christmas, I conceded defeat. I am now on official "sickness retirement", as it is called in Finland. Chronic insomnia is not recognised as primary grounds for sickness benefit, so I am suffering from "depression", with insomnia as the primary "symptom". In spite of all good intentions, I am still taking Imovane. As a founder member of a self-help group for insomniac sufferers, I have the comfort of knowing that I am not alone, and we,together, have achieved much in promoting our "cause" with cooperation from medical professionals. But, like so many others, I still haven't found my "own", committed, doctor, or a satisfactory explanation for my disorder.
Let me gradually wind up this tale by mentioning a few factors which I consider relevant to my medical history, hoping that thay might ring a bell of recognition with other patients and give cause for reflection, even insight, among medical professionals!
I have a loving husband and son. Continued financial hardship and uncertainty is clearly an unhelpful factor in promoting any recovery but I do not understand why my memory lapses, concentration and decision-making skills, and in particular, my language skills are progressively regressing not recovering. This is not imagination: my nearest and dearest will bear witness! It seems logical that the downhill slide is the result of both insomnia as such and the long-term use of sleeping pills that together have conspired to undermine the sleep-inducing brain chemistry. But why the downhill direction rather than a steady uphill climb, or even a plateau?
There is no knowing beforehand if the approaching night will be one of sleep, little sleep or no sleep. When I fall asleep, it is without any kind of in between stages of half-sleep, that I'm aware of, anyway. I never have the drowsy, sleep-is-coming-on feeling. This naturally adds to any anxiety about not dropping off: there's no comforting sign" that promises relief.
There is one factor, that, until recently, I had counted as a blessing. It is the remarkable fact that my resistance to any kind of illness, "bugs" or stress-pain has increased since the trouble began! I used to be particularly prone to the common cold and sore-throats, for example. Now the last cold was over ten years ago. I don't suffer from headaches to speak of and virtually never from back, neck or shoulder pains. Eye pains, yes. Could this boosted immunity be, in fact, a clue to the problem? Could it be a result of the body (stress hormones?) fighting against the not-sleeping and the production of efficient antibodies?
I've given up on psychotherapy, complementary and alternative medicine. At the moment, I feel pretty desperate. But I will not give up on everything! I'm pinning my hopes on scientific research and the possibility that one day I'll learn what is really going on in my brain, at the molecular level, for example, as the technology of measuring and scanning devices becomes more sophisticated. I might be able to benefit personally from such discoveries and insights.
At the present level of expertise, there are obvious ethical and safety restraints on in depth research into the mysteries of living brain cells while they are inhabiting living people. I´m willing to donate my dead brain, at least, when the time comes, to medical research in the interests of scientific progress! I would like to urge other chronic insomnia sufferers to do the same. The causes of Alzheimer's Disease, for instance, are becoming clearer, thanks to the availability of deceased donors' brain tissue. Someone, somewhere, sometime, will surely crack the code of sleep/wake mechanisms and put researchers and researched, professionals and patients, on the right track!
© Chris Idzikowski 1998-2004