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KATE FAY'S STORY
To understand the efficacy of the benzodiazepine drugs as tranquillisers and sleeping pills it is necessary to know how these drugs work on the brain. And to understand benzodiazepine addiction and withdrawal, it is necessary to understand the body's compensatory reaction to that action.
Throughout the brain and spinal cord there are GABA receptors, which both inhibit neural activity and, indirectly, alter the production of neurotransmitters, such as noradrenaline, serotonin, dopamine and acetylcholine. The benzodiazepines act on these receptors to increase their inhibitory activity and reduce the flow of some of these neurotransmitters and so induce, among other things, calm, sleep, lack of emotion, and relaxed muscles; and they begin to act in minutes.
After about two weeks of the continuous presence of these chemicals, the brain begins to compensate for this increased inhibition by reducing the intrinsic inhibitory action of the GABA receptors, and increasing the production of some neurotransmitters, thereby producing the state of neuroadaption known as tolerance; and this state of tolerance takes, at least, one year and often two or three, in the absence of the drug, to reverse back to normality.
So what does tolerance mean for everyday behaviour and experience? It means that the only way the person involved can limit their excitability and alertness - their readiness for "flight or fight", the fundamental survival mechanism, is by taking the drug. Between doses, as the level of the chemical in the brain decreases, they have only their weakened GABA receptors to modify their experience, and at the same time, an increased flow of noradrenaline etc. This is an intolerable state to be in, and the only solution is to take more of the drug, because the person's natural ability to modify neural activity has been weakened and there is nothing else which will do that job. That is the basis of the chemical addiction to a benzodiazepine.
Under these circumstances the benzodiazepine addicts know they cannot manage without the drug, and they are right. They are as right as diabetics who know they cannot manage without insulin. However, benzodiazepine addicts do not know why. They usually assume, with the support of most professionals involved, that this is a weakness of character, if not full-blown mental illness. This is the nature of psychological dependence.
At the same time it seems that there is no compensatory reaction in the areas mediating emotion, memory or sensory experience; they remain anaesthetised as long the drug is present, and for some time after it is stopped. It is also necessary to understand that after the drug is stopped the initial detoxification period takes between six to eight weeks compared to five to ten days for heroin or alcohol, and neurophysiological recovery takes years.
Recovery is interspersed with periods of intense withdrawal symptoms. This is not fully understood but is probably connected with the fat-soluble nature of the drug, its long-term storage in the body's fat cells and its cyclical release into the blood stream over many years.
HOW IT BEGAN
It all started in 1980 when standing in my kitchen I had what is commonly called a panic attack. I didn't know that is what it was; I only knew that I couldn't breathe, life itself seemed to be draining from my limbs, my heart was pounding, and suddenly I was full of dread and 'running for my life'. I didn't know that the dread and the running were part of the attack; I thought they were a reasonable response to what I could only think was a heart attack. The doctor, when I went to him, told me there was nothing wrong with my heart and to go home.
I didn't think of myself as an anxious person then, though I was under pressure; living in a squat with three small children and no money, but a year later I certainly was. The attacks came unpredictably, leaving me quite helpless - I could only think it must surely be a serious physical illness. And so I became more and more anxious, with all the symptoms - depersonalisation, derealisation and fear. The doctor diagnosed 'stress' but I didn't know what that meant. Then he prescribed Valium, and it worked like a dream.
I had heard of Valium. I knew some people disapproved of it and regarded taking it as a weakness. I knew it was called a tranquilliser. But now it seemed it could also control these strange, frightening episodes. And if it could do that, then I could and did stop being anxious: it all added up. It also made me feel a bit cut off and sleepy, but if those were the only side effects, I could live with them.
A year went by and I heard, by chance a Woman's Hour programme with a psychologist describing what he called a Panic Attack. He explained what it was, how it happened and how to deal with it. I bought his book and practised his breathing exercises; it was such a relief to understand it at last. But even so I didn't stop the Valium; I now felt shaky and nervous every morning when I woke, and dizzy, and anyway I still might have a panic attack and one 2mg tablet three times a day cured all that, more or less, and I could always take some more if I still felt bad.
And so the years went by, and now I always seemed to be unwell; nausea and stomach pain, diagnosed as diverticulitis, dizziness, blurred vision. I always felt low and depressed. I never wanted to go anywhere or do anything. Then I started getting intense stomach pain: an ulcer perhaps, but a barium meal showed nothing. And then I lost the sight in one eye and again extensive test showed nothing and after a month it cleared.
There was never a problem in getting a repeat prescription, I simply phoned the surgery and asked for one, and picked it up the next day. After about five years however, I would sometimes take more tablets than were prescribed for the month and then the doctor would call me in to tell me I must stick to my 6mg a day. On the last occasion he explained that his practice had a policy of not increasing the dose for younger people, although it wouldn't matter for older people. He didn't explain why and I didn't ask. From what I now know, it means a policy of keeping one age group in chronic withdrawal, and the other increasingly drugged. Either way it was a policy of keeping everyone concerned in a state of continuous ill-health. Whether he understood the nature of addiction and tolerance and its symptomatic equivalence to withdrawal I don't know.
None of the four doctors I saw in that practice ever connected my perpetual ill-health with their prescription of Valium, although all my symptoms have been recorded as common 'side-effects' in research reports since the early '60s and in self-help books. None of them ever told me the drug was addictive and when I said on different occasions, to each of them that as soon as my youngest child was settled in school I would stop taking it, none of them warned against stopping suddenly. Now in the tenth year of taking Valium, I decided to start psychotherapy. I thought if I resolved my emotional problems, the fear and depression then I would regain my health, stop having panic attacks and give up the Valium. When I told the therapist I was taking it, he simply said that I should stop. But I did not: I thought I would wait until I was a bit better and stronger.
THE NIGHTMARE YEAR
Now it was 1991 and that Christmas I went down with flu, or did I? Anyway, I thought I had, and that it would be a good moment to give up smoking and stop the Valium. Well the Valium was easy; I just didn't take any more, no craving. No perhaps I'll have a bit: nothing. But smoking: that was too difficult; perhaps I'd just cut down.
I have no idea how long I stayed sane: one night and a day? Two? Three? What I remember is waking in the early hours, from a deep sleep to complete alertness in an instant, and flinging myself out of bed in utter terror. I hung over the banister waiting for the cataclysm, which would end all existence. One day when I can read The Second Coming, 'Things fall apart the centre cannot hold' with manageable desperation, I will know I am completely well. But not yet, the memories are still too vivid.
I must have slept again. But the next morning I was storming round the house shaking, shouting, unable to keep still, and over and over again the questions: What is this? What's happening? Is this the breakdown the psychotherapist says must happen before I can build a new healthy life? What forgotten horrors lie in my past that would manifest themselves like this? A few hours passed before I wondered if, maybe, not taking any Valium might have something to do with it. I found the number for the nearest drugs project, phoned them, described how I was and that a few days previously I'd stopped taking Valium - could that have anything to do within?
'Yes, of course', was the answer, that is exactly what would happen. 'What should I do?' I asked, 'shall I start taking it again?' 'That would be a shame' they said. 'Now you've got this far why not carry on and see it through?' Which might be appropriate advice to someone coming off heroin when the acute withdrawal lasts only 5-10 days, and is expected and understood, but I had a family and a job and I didn't know I was an addict, or what the consequences of addiction were. I started the tablets again, but took less, until after a few days as the fear built up I'd take another 2mg for a few days and then back to 6mg or 4, and so it went on varying the dose; trying to come off, failing, trying again. Clearly I was very sick emotionally - clearly the drug suppressed that sickness and the only way to get well was to stop taking it and face whatever emerged. The psychotherapist said so and I thought he was right. That was going to be difficult because apart from the fear I was physically ill. The flu kept recurring with mild delirium, aches, and weakness, although, strangely, a normal temperature.
By the end of February I'd become very weak down my left side. I kept knocking things over and stumbling when I walked. I had pins and needles down my leg and arm and the left side of my face was numb. Sheer terror - had I had a stroke? Was I dying, what now? Off to the doctor again and this time 'neuritis' was the diagnosis, which I immediately connected with the temporary loss of sight the year before. This was the second time: so could it be multiple sclerosis? 'Well, yes it could, but it probably wasn't was the answer, but he would send me for tests.
The specialist asked about my symptoms - the loss of sight, the weakness, and pins and needles. 'Well, yes' he said considering, 'different times, different parts of your body, that is certainly characteristic of multiple sclerosis'. And so he tested my reflexes and finally drew something across the sole of my foot. I knew this was the deciding moment, would my toes go up or down? Up for multiple sclerosis down for normality - I'd read it in my neighbour's RD family health book. Down they went, curled in against the tickle: and in came the consultant to confirm that, whatever else was wrong with me, I didn't have multiple sclerosis. And in my flat distant way I was relieved - of course I was, anyone would be. So why did I feel so little, except the usual thick headedness and incipient panic? And so I played the part: 'Isn't it wonderful? 'What a relief', but all I really wanted was to be left alone.
I was still ill and so I tried the doctor one last time and he took blood tests 'for everything testable', he said. Please, please find something treatable. But there wasn't anything at all to find, no bugs, no anaemia, no cancer. My sister-in-law had suggested Lyme's disease from sheep ticks, which would have been better than nothing, but nothing it was - nothing at all. I was completely well - except for blurred thinking, blurred vision, dizziness, unreality and perpetual fear. And if that had no physical basis, then obviously I was emotionally ill; so back to therapy.
The problem was that I was now so terrified of the therapist, I could hardly speak to him. When I said I was so afraid, he'd ask what of, and when I said I didn't know, he'd say I was afraid of myself and I was right to be. I was an emotional anorexic, dead from the neck down, no feelings. And in a year nothing about me had changed. Why, he wanted to know, did I not tell him what I'd done? What had happened each week before I saw him? I didn't do that because there was nothing to tell. Twice a week I went to work, and it was always the same. And on the other days I did the chores and then sat around waiting for the time to pass, and the night to come. Apart from fear and boredom, feeling nothing. Apart from keeping as still as possible, doing nothing. How could I tell him that?
The autumn came and I was still no better although I was back at work. I gave up the psychotherapy and accepted a doctor friend's suggestion that this was a post-viral syndrome and that in time I would probably get better. Although from my point of view I could still only function adequately when I'd taken enough Valium. It was clear I was dependent and I understood the addiction as an emotional weakness and that I must resolve my fears and depression before I could overcome it.
The drugs project had sent me details of a tranquilliser support group and in November, on a dark Wednesday evening, I went along. I had to do something. Group therapy might not be that threatening and if it was, I need not go back. There was a group of people sitting in a rather drab dark room, chatting. After a while one of them asked me to tell her, but only if I wanted to, what I was taking and how I was. I said I usually took about 9mg of Valium, but that I'd been ill all year and I wasn't sure if I was well enough to come off yet.
She asked about my illness. And so I went through it all from the diverticulitis on. And with each symptom there was almost a chorus of responses. 'Oh yes, I've got that. I had that. Do you remember so and so? He had that. Did you only lose the sight in one eye? I lost it in both, but only for two days. Did they call it diverticulitis? - It's usually irritable bowel for a woman. Dizzy? That is your blood sugar - eat little and often. Multiple sclerosis? - You're the first one for a long time but do you remember... ? And flu - oh we've all thought we've had flu. It's the drugs dear, just the drugs: have you been upping and downing? Well there you are then, no wonder you've been so ill.'
'And I'm so afraid all the time. Of course you are dear: these drugs make you afraid, that is the one thing everybody gets, even if they were only given them in the first place for muscle pain.'
I was astonished and then utterly relieved: years of misery and illness made sense of in one conversation. The following week we planned my withdrawal; first to level out on a fixed amount until I felt better; then when I felt ready, to reduce the amount by ½mg; then wait and see how it went, and when I felt ready again, another ½mg.
'The discipline is in curbing your impatience and coming off slowly. If you can do it slowly you'll only have to do it once!'
The next day I went to the doctor to explain what I was doing and to ask for his support. He asked how long I thought it would take me to stop taking the Valium, and I said, guessing, that perhaps it would take a year. He looked doubtful and told me I could do it in three weeks, but if I wanted to take my time he would not stop me.
The group met every week and in between I could phone Esther or Joan for reassurance. Esther had founded the group ten years before. She had visited a doctor just to talk years ago following a harrowing family event, and been prescribed Tranxene followed by Ativan and rapidly gone into chronic withdrawal ending up in a psychiatric hospital for six years and diagnosed schizophrenic. When I met her she'd been off the drugs, and well, and back in her very demanding job, for ten years.
Over the following years I met all sorts of people: - they all had the same story to tell of fear and illness - with variations; the ones who had spent years in psychiatric hospitals diagnosed as schizophrenic, manic depressive or having a personality disorder; the ones who'd been so ill and afraid not knowing what was wrong with them, that they had been ''struck off'' the register by their doctors for being impossibly demanding; those who had spent a fortune on private psychotherapy and driven themselves and their therapists to despair, because of course it didn't help at all. All these people, having found the support group, and come off slowly in their own time, were perfectly fit and well and had rebuilt their shattered lives; all without therapy or medication, but with the steadfast support and reassurance of the ones who had gone before.
Once we were joined by a professional, a psychiatric social worker. He listened to us describing our experiences to each other, the fear, the pain, the agoraphobia, the problems breathing, and all the rest, both being on and coming off the drugs, and then as he left he announced that what we really needed was to find within ourselves what we had got from the drugs. Clearly he had not understood what we had been saying; that what we had been talking about was what we had got from the drugs, and his response just confirmed everyone's experience of professional help. Over the next month I stuck to 10mg a day and sure enough the influenza symptoms disappeared as well as the neck pain. I felt better than I had for a year.
Then I reduced the dose by 2mg and a few days later I went into a week of feeling very afraid, dizzy and unreal. Then I settled back into feeling less unwell. So it went on. I could phone Esther or James, Harriet or Joan for reassurance every day if I needed to. And every week I went to the meeting. I thought I was going slowly, reducing the dose every two or three weeks. I was still going to work two days a week and keeping house, so I did not take any notice when people suggested that I was reducing too quickly.
Now it was May again and I'd been reducing the dose for 16 months and I was down to 3.5mg. After that last cut I finally had to take time off work, because the muscles around my eyes simply stopped functioning. I could focus as long as I kept quite still, but each time I moved my head it took a minute or so to re-focus. And as far as driving or even walking went I simply could not even get to work. This was the first time withdrawal became so disabling.
Of course I phoned Esther and she said (as she always did) that if I was worried I should see the doctor, but they were quite sure it was the last cut I had made. Well, I was worried, but not that worried. The doctor had never understood all my other problems as being tranquilliser-induced and the last thing I needed was to have my little bit of certainty undermined. I'd already lost the sight in one eye and had years of blurred vision, and he had not connected that with Valium. Why would he be able to help with this?
After a week or so my sight was back to normal, so I did another ¼mg cut and went back to work. I did, however, suggest to the people I worked with that I might go into the local psychiatric hospital to come off the last few milligrams, and get it over with. I still believed in spite of every thing I had heard, that I could stop the last bit, go through perhaps a slightly worse withdrawal, get over it in a week or two and that would be that.
A few days later, three days after the last cut, I went to work and was outside, topping up the soil for some container grown trees, when the sense of dread became suddenly unbearable. I could only say that I was going home and went, driving fast and erratically. Arriving home I fled to the bedroom.
The next day, light headed and afraid, I did the chores and lay down to sleep. Waking at lunchtime, I came downstairs and turned the radio on to hear the announcement that John Smith had died. It felt as though I had been hit by an enormous solid wall of stone, or a huge wave of sound, loud and deep - a reaction way beyond any personal feeling I'd expect to have. And then the next morning the world I knew disintegrated.
I spent most of the following month in bed, paralysed with dread. As it abated, I knew I could not face this reaction every time I reduced the drug and so I asked the doctor to admit me to the local psychiatric hospital to come off the rest.
We arrived at the hospital about mid morning and were greeted by Eddie, the nurse who would be my main contact. There were forms to fill in and questions to answer and then an interview with the ward psychiatrist. The only thing I really remember was her saying how wrong it was of my GP to issue repeat prescriptions all those years, and my feeling reassured that she understood my situation. We must have talked about panic attacks, but I doubt if I tempted fate by explaining that I no longer got them. However, I did explain that I'd been reducing the Valium over the last 16 months and was now down to 3.75mg, that I had gone too quickly and it had made me very ill, and that I wanted to come off the last bit in hospital. And she suggested that the most important thing was to deal with my panic attacks. I said that could wait until I was well; the most important thing, to me, was to get off the drug. And so the scene was set.
My husband left soon after this exchange I was trembling inside, thick headed, and cut off. I started to cry. This psychiatrist must have seen my tears, because she announced that I was depressed and she would help me to take anti-depressants. I said I was sad, not depressed, and I did not want to take anything. She also offered sleeping pills. I didn't think to ask if they would be temazepam, another Benzodiazepine drug, or chloral hydrate which isn't. I assumed the worst and said I would let her know. But this still was not the end. She now told me that I would need to take Stelazine, a major tranquilliser normally prescribed for psychosis. I was prepared for this one (although I had not expected it); I really thought my wish - simply to come off the last of the Valium - was accepted.
People in the group had said so often that you go into hospital to come off one thing and come out on half a dozen other pills and the worst were the major tranquillisers because they suppressed withdrawal and so one either never recovered and took them for life, or eventually stopped them, and went through it all again.
So "No thank you" I said. She explained she wanted me to take it because she was a compassionate doctor and couldn't bear to see me in such distress. 'Well you take the tablet', I thought, 'and I'll get on with getting well'. But I was too scared to say it. I explained again that as far as I knew it was the diazepam, which was making me ill, and that after the last bout of withdrawal I just wanted to be somewhere 'safe' and undemanding to come off the rest. So that was it until the afternoon, when Eddie suggested we have a chat about my panic attacks.
I told the story again, how I had been chatting to the man next door in my kitchen and cooking. And since reading, "For people who panic", and learning to breathe properly, I very rarely got them: they were not the issue, the issue was coming off diazepam. "Will you stand by me in withdrawal?" I asked for the first of many times to come. "Yes of course, but we must deal with your anxiety", was the answer.
The day was nearly over. One last 'therapy' session to go: the psychiatrist drew me to one side, after tea: "You never told me there was a man in your kitchen when you had your panic attack". I only wish I'd been well enough to enjoy the comedy.
If you ever want to study the character of denial, there's nothing like listening to a professional dealing with tranquilliser addiction.
The next morning the psychiatrist spoke to me again. She explained that they had a drug, chlordiazepoxide, which was not a major tranquilliser, which would ease the withdrawal effects of coming off diazepam, and I believed her. I think I believed her because I so wanted it to be true and because for the first time she seemed to have acknowledged that tranquilliser withdrawal was in itself a terrible experience. I was to start on 20mg, 5mg four times a day and cut the diazepam down to nothing over the following week. And so I took the first dose. Of course it wasn't long before I realised it was Librium, another Benzodiazapine drug.
The next morning the consultant psychiatrist arrived for her ward round and suggested she and the clinical psychologist should talk to me in the garden. I asked why I should be given Librium to come off Valium. She explained it was because I had refused Stelazine. Did I realise that I could bring on a fit coming off 3.25mg of Valium in a week? 'Nasty things fits', she added, 'and you'd lose your driving licence. Wouldn't that be a nuisance?' The Stelazine would prevent that. But if I would not take it, Librium was the next best thing.
She looked to the psychologist for confirmation. He nodded thoughtfully: yes, indeed that was the best solution. I tried once more to say that it just didn't make sense. 'Trust me, I'm a professional.' she said. A little while later the ward psychiatrist came out to tell me that I should explain to my husband that the equivalent between Librium and Valium was 1gm to 1mg. It is hard now to remember how afraid I was and how foggy my head felt so I accepted this nonsense. But I do remember thinking that, since I at least knew how to get off a Benzodiazepine drug (like Librium), and that I knew nothing about major tranquillisers (like Stelazine), I might as well give in. I did at least say clearly that I was not leaving the hospital while I was still taking anything at all.
That evening Esther came to pick me up and take me to the group meeting. I described what had happened and how I'd given in to it. There was no judgement, it was accepted without question that I was in no state to fight this kind of pressure. But there was the reassuring confirmation that chlordiazepoxide was indeed also known as Librium and that 25mg was equivalent to 10mg of diazepam and that the worst that could happen was that it could just add time to my withdrawal.
After taking all that Librium and the last of the Valium over the following week, I felt a bit better. More in touch, rather less woolly headed and I could easily go to the physiotherapy department each morning for Keep Fit. The physiotherapists were very helpful giving me time on my own to practice breathing correctly, and relaxation classes. In the afternoon I walked round the grounds - beautifully planted - or I went to the Occupational Therapy for painting and pottery.
People who visited would say how much better I looked and I could only say yes, but I'm drugged. And although I was no longer desperately afraid, I knew I would never choose this kind of mental health: it was not my real self and it felt far too precarious. The terror was only a little further away and as soon as tolerance to the drug dose set in it would be back. In fact taking more Benzodiazapine drugs than I had ever had before didn't even restore me to the state I was in before coming off. And so there was absolutely no temptation to opt for staying on the drug.
I wrote a statement at that point to say that even if off the drug I was anxious or depressed, I would rather be that and drug-free than "well" and drug dependent.
Over the next 2 weeks the Valium was stopped and the Librium decreased and during those weeks I was functioning - I could share meals and did not need to eat in solitude. I could go for walks and talk to the other people on the ward. I felt shaky, dizzy, cut-off and anxious, but it was bearable. People from the support group came to visit. Esther picked me up on each Wednesday evening and took me to the group meeting.
When I was down to 5mg of Librium I thought the psychiatrist would want me to come off it more slowly and I asked the ward sister how that would happen. She said that I could work it out myself: "It's empowering." So off I went and wrote out a plan for reducing by ¼mg every three days, coming off on the twelfth day, and I left it for her in the office. The next morning, duly empowered, I joined the queue at the drugs trolley and explained what to give me, to the nurse there. He looked doubtful and then checked my notes and said that I wasn't written up for any more chlordiazepoxide at all.
Now as the days passed the withdrawal symptoms intensified. I felt I was going to explode inside. I could not keep still I couldn't be near other people, or inside the building. At the same time, I couldn't bring myself to go any distance outside: I just walked round and round the ward in the garden. And now I couldn't chew or swallow ordinary food, while at the same time I would get pangs of hunger every hour or so which in themselves brought on intense terror; so I ate bowls of Ready Brek or Weetabix with milk and if the milk ran out, with water.
Now, two years later in the group we laugh at the memory of me and my bowl of Ready Brek , I couldn't go anywhere without it. At meal times I would collect my food and take it out to the garden right under the hedge, but usually I couldn't eat it anyway.
The ward sister seemed to understand this one; she said it was the same for some people coming off heroin. Although I learned later it would have only lasted 5 days or so for them, whereas for me it was 5 months.
I could no longer walk to the physiotherapy department or go to the Occupational Therapy and the psychiatrist called over one morning to say that if I would not take part in what was offered there was no point in my being in hospital. What was the matter with me? I tried to tell her how it felt, that the withdrawal was now really bad. It cannot be withdrawal she said: "You came off the Valium two weeks ago and you were all right." I tried to explain that was because I was still taking Librium, and now that had stopped the Benzodiazapine withdrawal was in full flood.
But she was not having it. Coming off the Valium had not been a problem and I could not have become addicted to the Librium in just two weeks, she knew, because it was often given to alcoholics for that length of time while they stopped drinking and they did not get addicted.
What could I do? Where could I go? Suppose she was right and all the books I had read and the people I had spoken to were wrong. And even if she was not right how could I cope? Well I did what I always did: phoned Esther or Harriet or James, (I cannot remember who). They talked me through the terror.
There was not much more to go. The next day, sweating and shaking and wringing my hands, I went to the staff nurse for comfort, reassurance, anything, but she explained that my symptoms were not so much physical withdrawal as grief for the loss of the drugs I had depended on for so long. Then the charge nurse, (my next hope), told me that the drugs had masked my true state of mind all these years and if I would not take them any more then of course it would be revealed and I would have to live with it. That sent me scurrying to the phone again, where James's response came close to melting the wires. Now it was the weekend and my husband was visiting. Speaking to the duty psychiatrist, it was clear she had no understanding of addiction to, or withdrawal from, "the most commonly prescribed drug in the western world." So we packed my things and he took me home.
I arrived home and while there was no question in my mind that it was the house that I had lived in for the last sixteen years (the garden was full of flowers, the trees still in the summer air), it was so unfamiliar, all so far away as if I were encased in a glass shell. The dread was crawling through my skin and I knew that at any moment I could explode in terror, endlessly.
The only thing that I could do was to lie on my bed, very still, alone. And that is what I did for most of the next four months. By now I had been off the drugs for ten days and the withdrawal symptoms were in full flood: my chest was so tight that I felt that I was not really breathing, my head thick and humming, my stomach churning and clenching; I kept falling asleep and a few seconds later I would wake with a shock. This would go on all through the night. I still had to eat every hour. Weetabix and a half pint of milk washed down with decaffeinated tea.
My thoughts were all of the futility of life, of the waste and hopelessness and all around the dark echoing emptiness. And then I would telephone Esther, or Jenny, or James so that they could tell me yet again that they had had those thoughts, those feelings, that desperation. And that it was the pills. And that I would get well. Sometimes, when it was hard to breathe, Gladys would go through the instructions for relaxation and then count as I breathed in and out.
Part of the despair was the inability to do anything normal. Still at least I could go to the loo alone. Gladys, when recovering, had had to telephone someone to talk to her as she crawled upstairs into the bathroom and back to her sitting room floor. And I was not as bad as Penny, who was so terrified at the sight of her sitting room walls caving in on her that her husband put up a tent in the room for her to be in. 'And look at us now' they would say', 'we are working, travelling, bringing up our children; look at Sarah, she didn't go out of the house for twenty years and now she's a nurse.'
'Yes, but how long? When will I be better? No one would say definitely. And they were right not to. Partly, because recovery is unpredictable, and also because to know the likelihood of an insane three months, a horrible nine months, and then another difficult year, would, at that point, have been unendurable. I suppose it was the hope I could get from other people's experiences that made it bearable. And lying very still. But when I got up and felt the trembling inside, and the depths of my disassociation from my world, my body, my mind, then what made it bearable was to smash my head against the kitchen wall until the pain and numbness blotted it out for a few moments. And I could stumble back to bed.
More than a year later, when I described this at a group meeting, Esther rolled up her sleeve to show the scars from the cuts she had made with a Stanley knife, trying to overwhelm with pain, her desperation in acute withdrawal.
As the months went, by I realised that there were more and more things that I could do: I could sometimes sit at the kitchen table and share a meal with my family; I could go outside for a while; sometimes, cook and do the washing up, sometimes. But as often as I took a step forward it would collapse again and I would be back, hiding in the bedroom. I was utterly frustrated: I wanted to get on with my life; it was frightening watching the months and years slipping away. I wanted to try, to be brave. But how can you, when the mental mechanisms you would use no longer work?
Now, in November, came the first precious moment of recovery. I was in bed and my daughter came and cuddled beside me and I put my arm round her - well that is what mothers do, isn't it? And welling up inside me came a wonderful, glowing, peaceful feeling belonging to our closeness. And then I wondered why - had I eaten something? Was there something in the supper? Wine perhaps? And then: is this what love feels like? Is this affection? And suddenly I knew that, for the first time in her ten years, I was feeling love for this child of mine.
Over the following months the fear subsided and my feelings slowly emerged. Music could be unbearably beautiful and colours extraordinarily intense. And with the subtle emotions of pleasure, gratitude and disappointment, each time I would have to stop and identify what it was. Because after fifteen years of feeling nothing, I did not know.
Now, two years and four months later I am back at work and have visited friends in Israel. I have even swum in the Cornish sea, something I used to love and thought I would never do again. And best of all there is the joy of rediscovering my family. I still have a long way to go; my head is still thick and muzzy, my memory is unreliable, I easily get exhausted and then I feel remote and cut off, and I still hyperventilate for no apparent reason. But the support group is always there. I have spoken to David who is running his business and driving food out to Bosnia every few months, and to Steph, who after twenty years in hospital diagnosed manic-depressive has taken 'A' levels in maths and economics, and has just started a degree course. 'How long were you off before you could start all that?' 'About three years' was their answer. 'Be patient, you'll make it'
The last word must go to James who had come off Ativan, recovered, and was planning to work abroad. He phoned a while ago to say he had had bone cancer diagnosed and was in the middle of a course of chemotherapy. I could only say how terrible it was: 'Well yes, it's terrible' he replied ' but it's not as terrible as being on and coming off benzos.'
Benzodiazapine addiction is an illness in itself, caused by this chemical alone. Non-professional support groups know this and know that the only cure is slow withdrawal and then healing over time. They simply offer the reassurance, support and encouragement that makes this possible.
Medical professionals rarely understand that this is the case, (although the information has been available to them and the public for decades), and their ignorance has merely served to perpetuate and complicate the addicts' distress.
The impact on ordinary lives of benzodiazepine prescribed addiction is equivalent in its scale and denial to the tragedy of Bhopal. Moreover this is a disaster of increasing magnitude, as today these drugs are also now being dumped on the peoples of the third world.
Ashton, H. (1984). Benzodiazepine withdrawal; an unfinished story. British Medical Journal, 288, 12-28.
Ashton, H. (1986). Adverse effects of prolonged benzodiazepine use. Adverse Drug Reaction Bulletin, 118: 440-443.
Ashton, H. (1989). Anything for a quiet life. New Scientist, 1989; May 6:52-55.
Ashton, H. (1991). Protracted withdrawal syndrome from benzodiazepines. Journal of Substance Abuse Treatment, 8, 12 - 28.
Hallström C. (ed.) (1993). Benzodiazepine dependence. London: Oxford University Press.
Ritson. P. (1989). Alive and Kicking. Liverpool: Casa Publications.
Roche Products Ltd (ca. 1990). Benzodiazepines and your patients; a management programme. Available on request from Roche by prescribers.
Victims of Tranquillisers Newsletter (1995) Issue 1, VOT, Dr R F Peart, 9 Vale Lodge, Vale Road, Bournemouth BH1 3SY
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