A Slice of Benzo History
(A little about my own benzo history and the overall history of benzo prescribing and benzo illness.)
At age 17 I read Virginia Woolf’s essay
‘A Room of One’s Own’. In a particular passage the author describes a curious
experience which has happened to many of us: in the middle of an involving
activity (digging the garden, reading a book) our awareness shifts slightly and
we suddenly and unexpectedly find ourselves at a slight remove from our
activity. Suddenly we are experiencing our behaviour partially objectively and
therefore as an all new and strangely unfamiliar event; we begin ‘seeing’
ourselves doing what we are doing; seeing our hands on the shovel as ‘someone’s
hands on a shovel’, our feet in the dirt as ‘someone’s feet in the dirt’. No
longer are we so utterly at one with the experience of those hands and feet as
to exclude this curious birds-eye view.
As I read Virginia Woolf’s description I was struck by it: she was describing the experience which had led to me being prescribed valium 4 years earlier.
At age 13, during the school holidays, I was sitting reading in a big red armchair when my awareness suddenly shifted slightly and I perceived myself objectively for the first time ever. It caught me completely by surprise. Almost immediately after the shift in perception a sudden wave of terror overcame me. Very frightened I ran to my mother crying that something was terribly wrong. Certainly I found it difficult to explain what I was experiencing; it was so scary, strange and unfamiliar. Was I having a panic attack? I'm really not sure.
The long and the short of it is that within a couple of hours this healthy child was sitting before a kindly doctor he had never met before who methodically diagnosed ‘nightmares in the daytime’ and prescribed valium.
And so it began.
Valium, the most popular of the benzodiazepines, first appeared on the market in the early 1960's. Pharmaceutical companies sang the praises of these ‘wonderful, safe medicines’ and the medical profession soon chimed in. But from the beginning some benzo patients found themselves suffering miserably with drug side-effects, and a horrible withdrawal syndrome.
As the months and years went by, rival drug companies rushed new benzoes onto the shelves, keen to get a share in the highly lucrative anxiety/insomnia market. Each new benzo claimed to offer something different or special - these claims were largely deceitful but good for sales. ( In the early 1990s, at a seminar at Melbourne University, Professor of Pharmacology Graham Molds pointed out, with apparent distaste, that although there was a strong (market) incentive for manufacturers to exaggerate the differences between the benzoes, it was actually difficult to find major differences, they were all very similar.)
As the 1960’s progressed, millions of people world-wide were prescribed these medicines. By the mid 70’s Valium was in fact the best selling drug on the planet. Many were being prescribed them long-term.
Common benzo side-effects such as anxiety, depression, agoraphobia, panic attacks, headaches, fatigue, muscle pain, digestive problems, visual disturbances (I could go on, the list is long!) often don’t appear until after the pills have been taken for some weeks or months. Not everyone experiences such side-effects but many do. When concerned patients returned to their doctor complaining of these unpleasant developments, the benzo-related symptoms were commonly misinterpreted.
These harmful pill-effects were frequently mis-diagnosed as further signs of the patient’s pre-existing condition. If, for example, the patient had originally been prescribed valium for anxiety, and had developed panic attacks and insomnia after some weeks or months on the pills, the well-meaning doctor commonly concluded that these new symptoms were further signs of the original ‘anxiety disorder’ rather than side-effects of the medication. As a result, it might be suggested the patient continue with the valium or perhaps up the dose.
As for the bewildering array of more physical pill side-effects (visual disturbances, muscle pain, nausea, headaches, poor co-ordination etc.) these were too easily misinterpreted as evidence of hypochondria: physical symptoms dreamt up by an anxious mind.
By continuing on the medication or increasing the dose in order to combat these new symptoms the patient would be inadvertently exacerbating the damage which the medication had insidiously begun.
I was one of those who got caught in this maze.
At 13, with valium in my bloodstream, things became quite complicated. As the weeks went by I became increasingly anxious. I began having panic attacks and eventually became agoraphobic. A peculiar feeling of foggy unreality accompanied me every day.
On the outside I lived my teenage life successfully and sociably, achieving well, enjoying good friendships etc. but inside I was increasingly freaked out by the relentless anxiety and often bizarre sensations (electric shocks, formication, numbness, headaches, pain) which coursed through my body and mind. And all the while I was told that the small dose of medicine I took daily was stopping these anxieties and sensations from getting out of control.
This went on for years until, in my mid 20’s, the agoraphobia which I fought vehemently had become more or less continuous, and I was debilitated by profound fatigue, relentless high anxiety and severe, frequent panic attacks.
All the way along I questioned the medication, all the way along I pursued treatments and therapies, conventional and alternative, hoping to resolve my mysterious physical and mental ailments. All the way along I was reassured that my problem was psychological and the pills were the solution.
I took the pills as prescribed. If I stopped taking them, within 24 hours my body and mind would be in terrifying chaos, proving to me that the doctors were right, I was a madman underneath. So I would return to the medication.
In my late 20’s, in desperation, I called a telephone counselling line and told the guy on the other end what a wreck I had become; I told him about the relentless anxiety and panic, the constant migrainous headaches, the regular bouts of flu-like illness, the increasing depression and exhaustion.
He listened carefully then asked the question which changed everything; “ Are you aware that the medicine you are taking can cause all those symptoms?”
A medicine for anxiety and panic which in fact causes anxiety and panic? And depression? And profound ill-health?
I found it very hard to believe. I’d spent years learning that the medicine was the solution, that I was the problem.
Doctors are human, the mistake is understandable - many benzo side-effects mimic the very conditions benzoes were prescribed to treat. However, the cost for millions of folk worldwide who suffered such iatrogenic illness has been a heavy and often brutally life-changing one.
Whilst some benzo patients used the drug with no ill effects, many others, taking them just as prescribed, endured months and years of chronic and worsening ill-health.
Many were forced to gradually withdraw from facets of social life, work and family responsibilities. I’ve often heard ex-benzo patients lament the damage done to their relationships with partners and children during the years of benzo disability; years when a deadening, pill-produced depression or heightened fearfulness, or chronic, physical ill-health left them with little energy for play or work and removed them from the pleasures of ordinary activity.
Many speak of joyously rediscovering life’s pleasures and re-establishing healthy relationships once they have recovered from benzo use. Nevertheless, in some cases the damage done to work and family life, relationships and self-esteem has been significant with a small number of ex-patients reporting an ongoing struggle to maintain normal work or social routines due to the physiological or psychological after-effects of the chronic illness caused by prolonged benzo use.
And I remind you, I am not talking about drug abuse here, I am talking about regular, prescribed, low dose, medical use of a licensed medication.
Millions of dollars have been wasted all over the globe by benzo patients and their health-care providers, paying for mainstream and alternative medical investigations and treatments, attempting to discover the cause and cure of the mysterious illness which plagued them: an illness which had been caused, and was being maintained, by daily doses of supposedly harmless, supposedly helpful tranquillisers or sleeping pills.
Many of those people who were prescribed benzodiazepines were already living with debilitating health problems: that was why they’d come to the doctor. How cruel that for numbers of them their already vulnerable situation was further compromised by misguided treatment.
Other benzo patients were essentially healthy individuals who were prescribed a tranquilliser to ‘treat’ clearly non-medical circumstances such as ongoing relationship difficulties, worrying financial problems or normal human grief. For some of them, the prescription was the beginning of a much more serious problem.
The pill would often be prescribed with the reassurance that it was ‘only a child’s dose’ with ‘fewer side effects than last year’s model’ However such well-meant but quite spurious reassurances (which, by the way, are being recycled for SSRI patients) couldn’t stop the nightmare of injurious pill-effects from kicking in for a fair percentage of patients.
There have been various estimates as to how many users got caught in this net. (I seem to remember psychopharmacologist Professor Heather Ashton from the University of Newcastle on Tyne, estimating that somewhere between a third and a half of longer term users would suffer a significant withdrawal syndrome. Of them, a fair percentage would have been sickened whilst taking the pills.)
We went berserk over these medications. As the years went by they were prescribed willy-nilly for an ever widening range of ailments and supposed ailments; for minor trauma, for stomach upsets, during dental work, for the ordinary travails of ‘old age’, to assist with the demands of study and the boredom and isolation of suburban life, to smooth the hassles of motherhood, to ameliorate PMS, to ease the passage of menopause - in fact benzoes were prescribed to smooth the path of anything, physical, psychological or social which might conceivably be thought of as having some kind of rough or rocky characteristic. (A similar trend is underway with the SSRIs.)
Certainly in a minority of cases the pills may have been wise medicine, and in other instances patients would soon discard them and manage without. But many longer term benzo patients appear to have wound up in quite a mess.
Evidence has been uncovered over recent years which suggests drug manufacturers may have been aware of aspects of this harmful side-effect scenario early on. However, they were not rushing to inform the rest of us. Most doctors were listening to the drug companies and perhaps not listening carefully enough to their patients.
The benzo illness became an epidemic, evidenced by a figure quoted in Beatrice Faust’s book “Benzo Junkie” (Viking, Australia 1994): Faust informs us that in the late 1980’s the World Health Organisation estimated 50,000,000 people on the planet were dependent on benzodiazepines. I find that figure shocking.
Waking Up.
Back in the 1970’s, in both Britain and Australia (and I imagine it was the same in the U.S.A. and elsewhere) the odd doctor or health worker was expressing concern. But it was ex-benzo patients who initiated much of the early community education and recovery support-work. Having come off the pills, enduring the often painful and frightening chaos of the withdrawal illness (an illness which the medical profession generally didn’t acknowledge, let alone provide ‘treatment’ for), these pioneering men and women moved on to help others. They extended information and practical therapeutic assistance to those still stuck on pills or in withdrawal. And they talked to the media.
In the absence of appropriately informed medical services, the newsmedia and popular press played an absolutely crucial role for many years, informing the community of the epidemic of benzo illness and thereby assisting powerfully in bringing about cultural change. Stories of distress and recovery with titles like ‘The Bitter Pill’ or ‘Prescription for Disaster’ made good copy for newspapers, radio and television. Women’s magazines in particular printed many such pieces.
I would say that the majority of benzo sufferers I met or worked with between 1989 and 2000 discovered the real facts about their medication via the newsmedia, word of mouth, or through their own common sense. Their doctors were mostly telling them to keep taking the ‘medicine’, while media reports or neighbours suggested that the ‘medicine’ might be the problem.
Because the medical profession, by and large, continued to deny or misunderstand the situation, and because they were too slow to change prescribing patterns, the message had to come from elsewhere.
(In Victoria, since the mid 1980’s we were very fortunate to have Tranx (now known as 'Reconnexion'), the first Australian treatment agency for people recovering from prolonged medical use of tranquillisers and sleeping pills. Tranx was established in 1986 by nurses Gwenda Cannard and Liz Mackie and as word spread, their services were in demand. As the years went by the consistent and highly professional counselling and community education work carried out by the psychologists and educators of this organisation played an increasingly vital role in waking us up to the benzo dangers. This agency has been one of the world’s trailblazers in the field.)
In 1981 the British Health Dept, had issued new prescribing recommendations in acknowledgment of the growing concerns which were being raised about benzodiazepines in that country. Nevertheless, prescribing habits altered slowly, partially because the benzo manufacturers were still busily promoting their products and partly because benzo withdrawal symptoms were so frightening many patients felt they had no choice but to stay on the medication.
It was 1989 before Australia’s National Health and Medical Research Council (NHMRC) issued guidelines for Australian doctors recommending benzoes henceforth be prescribed only as a treatment of last resort for anxiety or insomnia, to be taken for no longer than a week or two at a time. This was a positive sign, though nothing changed overnight.
However, gradually, as the 1990’s unfolded, it seemed we were waking up, the tide was beginning to turn. Prescribing rates had fallen in Britain and were doing so dramatically in Australia. Younger doctors in particular became increasingly reluctant to prescribe benzodiazepines for longer than a few days at a time. (Benzoes are sometimes very useful if used in this fashion.) Some of us in the field began to think we would soon be out of work. But there is a sting in the tail of this story. The fall in prescription rates turned out to be something of a false dawn: the benzo problem didn’t go away.
During my enlightening chat with the telephone counsellor when I was a benzo patient and at my wits’ end all those years ago, he gave me the phone number of the treatment agency Tranx (now known as 'Reconnexion'). I called and made an appointment.
In short, after a very gradual reduction of my medication (the only way to do it) and an horrific and prolonged withdrawal, with the help of Tranx freed myself of benzodiazepines. Over my pill-stained, formative years I had learnt to believe I was a radically anxious person; within a year of withdrawing from benzoes it seemed I had become ‘easy going’, relaxed. I didn’t know myself.
In the years since, although I can experience periods of high anxiety in response to life’s circumstances, I do not live with the overwhelming daily fear, the monstrously constant anxiety of the pill years. I have never since had a panic attack.
During the benzo years, despite top-of-the-line psychotherapy etc. agoraphobia had me avoiding lifts, public transport, supermarkets, theatres and social gatherings. Off the pills I could go to movies and enjoy them, I could happily linger in the supermarket, relax on buses and trains, and keep appointments. And my general health gradually improved; no more severe headaches, strange aches and pains and bouts of flu like symptoms.
The world seemed entirely new and shiny, my senses emerged from a fog I hadn’t known was there: I was tasting things, smelling things, seeing things for what seemed like the first time; the simplest sensory experience - a breeze on my face, gazing at the greens of the bush, touching a piece of bark - brought me deep and unfamiliar pleasure. My love of life, my capacity to experience joy, was no longer damped by chemical chaos: it was blossoming. This was a rebirth.
(Like some ex benzo patients, I have discovered as the post-pill years have gone by that I have been left with a susceptibility to severe episodes of chronic fatigue, glitches in my memory and in my ability to learn new tasks and retain information. But I would never ever trade my ordinary, rich, sometimes difficult life for the horror of those pill stained years.)
Once I’d withdrawn from the pills, I too began working to assist other benzo sufferers.
Although we have not returned to the shocking prescribing rates of the 1970’s, when Valium was No.1 around the globe, in the second half of the 1990s there was a gradual resurgence in the prescribing of these pills. In these early years of the 21st century many Australian doctors are still prescribing benzoes inappropriately, seemingly as a first resort, and for long term use - that is to say, contrary to the guidelines of the Royal Australian College of General Practitioners and the Australian MIMS guidelines.
Such prescribers deny the drugs are a highly problematic medication, or they misunderstand the implications of the problem for their practice, despite the strong and clear warnings outlined in those Australian guidelines 17 years ago and despite the hordes of documented cases around the planet of patients who became dreadfully sick on the pills, got off them and became well.
So what went wrong? We were waking up, benzoes were falling out of favour and then, gradually, prescribing rates started to climb again. What happened? The answer is complex. In part I believe it may be due to the fact that while benzo prescribing habits were reformed in various countries in the late ‘80’s and early ‘90’s, the history of these drugs was following a different course in the U.S.A.
Although Valium got some bad press in the United States, as it did in other parts of the globe, the benzoes never really fell out of favour there as they did elsewhere. And that, I believe, has ultimately been to the detriment of all of us because powerful cultural trends in the U.S., whether in popular music or popular medicine, particularly when supported by sturdy marketing machines, eventually influence the rest of the planet.
Therefore, if we can raise awareness of the benzo problem in the U.S.A. we will all benefit. See 'America in Benzo Denial'.