One patient's story of long term iatrogenic dependency

 One patient's story of long-term iatrogenic dependency

This case is intended to give an example of how insidiously benzodiazepine dependency can develop and worsen - and perhaps offer hope to at least some of the very larger percentage individuals who have great difficulty or find it impossible to come off them by tapering. The case tells a now old but all too often repeated story. A drug is approved as safe and beneficial and free of dependency dangers (albeit often with few or even no long term trials), then, like diazepam (Valium) marketed aggressively and prescribed widely. As a result people get hooked on it and the ever higher doses they find themselves needing - and then, many years or even decades later, all of a sudden there is a tightening of regulations and 'lockdown' on prescriptions - leaving millions of patients to trawl dodgy online pharmacies selling possibly fake pharmaceuticals at exorbitant prices, buy on the street market from dealers, or go from one doctor to another for their next prescription.

In this case, the patient was first given diazepam in 1990 by a locum doctor during a late night home visit. Its intended use was as a muscle relaxant for an extremely painful coughing bout during an acute bout of pneumonia at home, and for which the patient was later hospitalised for two weeks. The patient was 38 years at the time. The diazepam tablets were given in a bottle of the lowest-dose (2 mg) tablets with the instruction to take ‘as needed’ - but without any patient information leaflet containing warnings of dependency. 

The patient quickly moved to taking extremely low doses of half a milligram a day (made by splitting the 2 mg tablet twice). After his pneumonia, he reduced his dose of half a mg per week - usually the same day each week (one which in which the patient regularly experienced a high level of stress and made use of the anxiolytic or stress-reducing effects of the drug). However, occasions in which the patient took this small dose on more than one day each week began gradually to increase. 

After a very short period of this extremely low-dose use of diazepam - averaging out at a maximum of no more than around 2 mg per week (dismissed by psychiatrists as a ‘sub-clinical’ dose) the patient was already, but still unknowingly, developing a dependency. He received repeat prescriptions, but also and again without dependency warnings. But he only really became conscious of this through an even he experienced after several years of low-dose use. Sitting in a cafe he had gone to every single morning for years and experienced as a comfort zone in which to relax and makes notes for his writing during the day - and during a period in which there were no particularly high or unusual stresses or anxieties in his life - he experienced a specific type and quality of anxiety of a sort he had never felt before in his entire life. This was associated with a slight sense of depersonalisation and agoraphobia which forced him to quickly leave the cafe. 

Only after returning home and taking a half mg dose of diazepam did this new and strange form of anxiety almost immediately dissipate. From this time onwards, however, he took these half-milligram doses more regularly, often twice a day, noticing also that the strange new type of anxiety would - with ever greater frequency - arise in between doses. As a result the patient asked for and was given repeat prescriptions from his doctor whenever needed - but again in a bottle and without any warnings of dependency or patient information sheet. At this time diazepam prescribing was totally unregulated in his country - despite long-standing medical knowledge of its dependency dangers. As a result of his growing dependency, experienced principally as interdose withdrawal symptoms, over a period of nine years, the patient’s dose gradually increased from one half mg per week to 2 mg/day. 

In the course of these nine years and by doing some research, the patient began to suspect a dependency problem and did research which confirmed this possibility. Yet it took a full 9 years for this to be even acknowledged by doctors and psychiatrists. Only through a referral to (Professor Malcom Lader, Maudsley hospital), a leading expert in benzodiazepine dependency, was the patients diagnosed as suffering from Prof. Lader he had come to research and know about from patients as ‘low-dose diazepam dependency’. Before his consultation with Professor Lader however, not a single psychiatrist or physician was prepared to acknowledge his symptoms as dependency signs - in fact the first psychiatrist he saw denied the very possibility of dependency and simply offered on the spot to give him a repeat prescription. What made this worse was that neither only his GP, nor both an addiction counsellor he was referred to and and a counsellor at the doctor’s own clinic had any knowledge at all of either benzodiazepines or benzodiazepine dependency. And still today there are no specialist hotlines or health services for helping patients with  benzodiazepine dependency and other prescription drugs.  

During the 9-year period before his diagnosis, the patient’s experience of interdose withdrawal symptoms had became more severe, and manifested also as neurological problems, in particular a proneness to acutely painful facial neuralgias, and toothaches - a very common dependency symptom. A lot of the toothaches led to what in retrospect may have been quite unnecessary extractions. He also developed increasingly severe agoraphobia (also a very common symptom), making it impossible for him to walk alone or use public transport, even to visit his sons. 

At one point quite early in his dependency, whilst still on dose of no more than I or 1.5 milligrams a day, the patient did successfully ‘cold turkey’ and discontinue the diazepam completely for three weeks. Unfortunately, this discontinuation was brought to an abrupt halt at a badly organised speaking engagement, in which the patient completely lost his normal, extremely high level of confidence as a public speaker and instead experienced the first and only ‘panic attack’ in his whole life. 

Given what was an extremely low daily dose, one might have expected that the patient would, by this time, have received some sound advice and guidelines on tapering - gradually reducing his dose and ‘withdrawing’ from use of diazepam. But by the time he found out about tapering regimes (and the now famous Manual on this written by Professor Heather Ashton) the withdrawal symptoms that the patient experienced merely in between doses were already so extreme and incapacitating that the thought of actually reducing his dose, however slowly had already become quite inconceivable. 

A major iatrogenic incident contributing the increase in the patient’s dose during his first nine years on diazepam occurred after just three days on which he was put, on his doctor’s suggestion, on the ‘antidepressant’ Prozac (fluoxetine). The result was that on going to bed on the third night he found himself in a state of consciousness so uncanny and terrifying he finds it quite impossible to describe to this day  - except as a sort of unimaginable limbo state between being and non-being. After getting up he told his wife that he felt no escape from this terrifying state except through immediate suicide within minutes - an impulse he had never felt before in his life, though he had never once before experienced suicidal impulses or even thoughts. Only an emergency late night call to his brother-in-law (himself a psychiatrist)  who suggested immediately taking a some diazepam - and quite literally saved his life on that nightmarish night.  Note: the patient had never had suicidal impulses or thoughts before this experience. But many incidents have been reported of otherwise non-suicidal people, killing themselves after taking Prozac or other types of SSRI antidepressant, even if within the time scale of two weeks which are thought to be needed for it to have any type of effect. 

The main fear of the patient after this event was that his dosage would continue to escalate - maybe even eventually reaching 10 mg or more. In fact he immediately needed to up it and his fears proved accurate. Over the following 11 years his dose gradually escalated in 2 to 5 mg increments to 30 mg daily. This was not because the patient made no attempt to resist further doses increases, but because, during times when he began to feel a need for an increased them he resisted this for months at a time, but only to find himself suffering the many typical somatic symptoms of dependency, some requiring emergency ambulance call-outs or dental treatment. 

At the same time, the patient’s agoraphobia and travel phobia became ever more acute. Whereas before taking diazepam he had travelled abroad frequently to teach or give his own  teacher-training seminars, now, except in the case of holidays he became ever more housebound and travel phobic.  

Nevertheless, through use of his own meditational practices, the patient was able to lead a very fulfilling life as a philosophical teacher and author, publishing no less than 25 books, five of which deal with the philosophy of medical science and praxis.  And it was and remains the patient’s firm belief that this most fulfilling and productive phase of his life would have been impossible if he had attempted or been forced to taper and come off the diazepam. Instead, he would instead have been totally incapacitated for years - as most people are while going through the ‘benzo hell’ of tapering down their benzo dose - even if only very slowly. And it is well-known that even patients who successfully go through this living hell and come off benzodiazepines continue to experience withdrawal symptoms for months, years - or even the rest of their lives. 

A big and unexpected change came when the patient felt that he was able to finally and permanently stabilise his dose at a a ‘ceiling’ level 30 mg daily. As a result, he arranged an appointment with his GP to request that he refuse any further requests for dose increases. This success in arriving at a ‘ceiling’ dose - despite years of frequent dose escalation - was regarded as medically impossible by ‘expert’ psychiatrists. Yet the patient has succeeded in maintaining his dose at this ceiling level for more than 15 years now. 

More recently, and despite extremely stressful life events such as selling his house moving home (and that to a previously unknown country - a very high-ranking event on the stress scale) the patient’s dosage began to spontaneously come down in significant amounts without any effort at all on his part, i.e.  without needing to follow any formal tapering schedule or regime such as that suggested in the Ashton Manual. 

This further success in self-managing his own dependency was aided in part by use of an anticonvulsant medication (pregabalin) now also prescribed for Generalised Anxiety Disorder and even trialled as a way of overcoming diazepam dependency, as well as of natural herbal supplements such as piper methysticum (kava kava) and also by ingestion of pure pharmaceutical grade GABA. This is the abbreviated name for body-natural neurotransmitter called Gamma Amino Butyric Acid, the availability of which is neurologically inhibited by long-term diazepam use and its effect on GABA receptors in the brain - this being also the main reason for the withdrawal symptoms experienced as a result of benzo dependency.  Currently, even though he is now suffering from advanced state COPD and Heart Failure, and experiencing the tremendous anxiety created through abandonment by  his 33-year long partner, he is still able to maintain his ‘ceiling dose’ of 30 mg diazepam with the help of pregabalin. 

Conclusion:

The example of this patient is an unusual and yet important one in many respects. Firstly, it destroys the myth that the only solution for benzodiazepine dependency is to lose months or possible many years of one’s life through the horrors of gradual dose reduction or ‘tapering’. This is important because the higher one’s dose and the longer one has been on the benzo the more years one is in danger of losing. Secondly, and less happily, the case of patient X also shows what can happen if, over a period of many years, no warnings of dependency are given, a patient’s symptoms are dismissed by physicians and psychiatrists - and advice on gradual dose reduction is not given at the earliest possible time - when the patient might still be on a very low dose. 

The patient nevertheless believes that if his dependency had between recognised when the first symptoms emerged, and at a time when his own dose was still extremely low and interdose symptoms had not yet become too severe - then tapering could indeed have solved his problem in a matter of weeks - and not the many months or even years of his life that he would have needed to sacrifice once his dose had escalated to beyond 10 and 20 mg - and his somatic symptoms due to drug tolerance had become ever more acute. 

The case also shows that despite fears and dire professional warnings from another leading psychiatrist in this field that say that it is impossible in principle halt dose increases due to tolerance setting and in this wa sstabilise one’s dose at a final ‘ceiling’ level, the patient was successful in doing so, albeit with help of his own form of both mindfulness-based cognitive therapy and continued occasional use of pregabalin.  

Finally his experience confirms that basic trust in his own accumulated individual learning, self-education, research and experience-based ‘expertise’ was a better guide to dealing with benzodiazepine dependency - and making independent decisions about dealing with it - than that of any medical or psychiatric experts,  most of whom are  woefully uneducated and uninformed about benzo dependency and have no idea - and no direct phenomenological experience - of the indescribable suffering it can cause.  

Though of course one cannot generalise from the experience of a single individual, the case of this patient does show that there is no ‘one size fits all’ approach to benzodiazepine dependency, and that even tapering is not necessarily the right approach for all and not successful for many patients, particularly after very long term use over decades. Even the very real dangers of abrupt cessation or ‘cold turkey’ cessation do not apply to all, but depend on how long  and at what dose a patient has been taking a benyo - and which specific benzo. Some benzodiazepines, for example, may be equivalent - per tablet - to an already high dose of 10 mg of diazepam. He was shocked again by the medical ignorance of a psychiatrist who actually suggested use of another benzodiazepine Klonopin (clonazepam) at a dose level equivalent to 30mg diazepam - as a means of tapering down his current 30mg dose.

Since successfully stabilising his dose, he has continued to engage in further in-depth research on the still on-going global pandemic of benzodiazepine prescribing and its horrific effects - as well as writing educational materials for physicians, psychiatrists counsellors and psychotherapists most of whom are woefully ill-informed on this subject - and therefore may not even recognise that their own patients’ symptoms might principally be a result of taking benzodiazepines or other highly dangerous psychiatric medications. He has also shared his own individual approach to coping with benzo dependency with others in the worldwide community of ‘benzo survivors’, as well as researching the new wave of antidepressants similar in nature of Prozac - and responsible for countless otherwise inexplicable suicides and homicides - including shooting massacres. 

His overall view of how to manage ‘withdrawal’ symptoms is that, like other illnesses, the most healing response to them is precisely to withdraw from situations or activities which induce stress of any sort - including not only negative stresses but positive ones. For what is called ‘stress’ is essentially a state of hyper-stimulation of the Central Nervous System which benzos make the individual far more vulnerable to any type of overstimulation - positive or negative.  That is because the receptors for the neurotransmitter GABA have been down-regulated in their activity by use of benzodiazepines - often permanently. 

The problem remains that so many people are still prescribed benzodiazepines as a way of reducing anxieties created by stressful life situations, but without knowing - and not being told - to what an unimaginable degree tolerance to and with withdrawal symptoms from these drugs can intensify anxiety states even whilst still taking them - and they generally heighten their vulnerability to anxiety through heightened sensitivity to both negative and environmental stimuli.

Other types of psychiatric medication, at first thought not to carry dependency dangers such as antidepressants have since been show to do so, even though do not primarily affect the GABA system but instead interfere with or damage the natural regulation of other neurotransmitters such as serotonin (SSRI antidepressants) or dopamine (antipsychotic drugs such as olanzapine). But no conclusions can necessarily be drawn from the experience of this patient for people regarding these other types of medication. 

Postscript:

The patient is currently suffering from advanced stage 4 COPD (emphysema) in the form of Heart Failure. Although there were signs of it long before, the emphysema was first diagnosed in its early and still relatively mild stages in 2015. However since being unexpectedly and abruptly abandoned 14 months ago by his 33-year long partner to live alone for almost the first time in his adult life (a huge  source of anxiety in itself) his condition has rapidly deteriorated. The patient is now receiving palliative home care abroad for extreme breathlessness, often at rest, through prescriptions of liquid morphine solution - but also with recognition of his need for both for continued diazepam use and also, via his past and present GP, pregabalin - which he takes at a maximum daily dose of 50 to 75 milligrams daily and finds extremely helpful. Indeed as well as morphine, diazepam itself is now often also prescribed for advanced COPD patients to ease sensations of breathlessness and alleviate bouts of breathlessness and rapid breathing   

The patient is now thinking of returning to the UK, but is afraid that his relatively high dose diazepam prescription will be refused in the same way it was in his current country of residence despite bringing a letter from his GP with him. At first and many times later no doctors or psychiatrists he met understood or even gave him time to explain the 30-year long history of his iatrogenic dependency - but instead simply labelled him as an 'addict'. Indeed one psychiatrist refused further prescriptions unless the patient entered a 'rapid detox' clinic of the sort notorious for their extremly high failure rate for patients with a benzodiazepine dependency. This put the patient at risk of a default 'cold turkey' cessation of diazepam which could have led to dangerous convulsions. He hopes his experience in the UK will be different.