Friends, Family & Carers

Use
Benzodiazepines are prescription tranquillisers used for treating acute cases of such problems as anxiety, amnesia and panic. The principal conditions for which they are used are shown in the table below, as is the class of benzodiazepine used and examples of the drugs which could be chosen to treat the condition.

In fact all benzodiazepines work in much the same way, but they differ in potency and the length of time they remain active in the body. 1mg of Lorazepam, for instance, is equivalent in potency to 10mg of Diazepam. This means that dosage must be managed very carefully to avoid unintentional over- or under-dosing. Different benzodiazepines remain effective in the body for radically different lengths of time. Each benzodiazepine is said to have a half-life, meaning that its effectiveness reduces by half in a stated time. For Lorazepam for example the half-life is between 10 and 20 hours, which means that by the end of a 24-hour period the drug’s effectiveness is much reduced. Diazepam on the other hand has a half-life of between 20 and 100 hours, so it remains effective considerably longer. Both potency and length of active time are very important in withdrawing from their use as will be described in detail later.

Benzodiazepines are very effective when used in the short-term, usually defined as 2-4 weeks. However, they are frequently prescribed for long-term use, sometimes years, for which they are not suitable, and most of the problems associated with them arise from long-term use. When they are prescribed regularly over a longer term, they induce dependence, usually after a few weeks, even on a therapeutic dose. As a result, the person becomes either dependent and cannot give the drug up without very unpleasant side effects, or addicted, in which case they need more and more drug to achieve the same effect.

All this is bad enough, but the drug also produces paradoxical effects where the symptoms for which the drug is prescribed become side effects of the drug itself, notably anxiety and depression, sometimes accompanied by uncharacteristically poor behaviour. Benzodiazepines are sedatives, so slow down reactions, making many everyday occupations more risky, driving for instance. There is a pronounced connection between benzodiazepine use and accidents on the road and at home, and elderly people are particularly susceptible. Mental processes are also impaired, so simple everyday tasks become more problematical and learning new things more difficult. People find they come to depend on the drug even for simple tasks such as shopping. Finally emotions can become blunted, so that both pain and pleasure are not felt as acutely as they would be normally.

History
Benzodiazepines were first introduced in the 1960s and soon replaced the barbiturates, which had previously been used for the same treatments. Barbiturates included among their side effects a tendency towards dependence, from which benzodiazepines were originally thought to be free. They were met with great enthusiasm by the medical profession, and the first two benzodiazepines Librium (Chlordiazepoxide) and Valium (Diazepam) were commercially very successful. Valium was marketed widely as “Mother’s Little Helper” and in 1980 some 29 million benzodiazepine prescriptions were issued. During the 1980s it became apparent that most people do become dependent on benzodiazepines and that withdrawing from them can be a long-winded and painful process. Although apparently some people have withdrawn without any adverse effects, not surprisingly the people I have come across are mostly those for whom withdrawal is or was difficult.

Social Cost
One can only guess at the true cost to society of benzodiazepine use. Added to the cost of the drugs must be such things as the cost of accidents, the loss of earnings revenue, the damage to personal relationships, the costs of caring for the sufferer and many others. I have yet to find even a broad estimate of that cost.

It is not essential to know how the drugs work, but anyone involved in withdrawal is likely to hear the term GABA bandied about, so it is probably just as well to know roughly what it is.

The nerves in your central nervous system (brain and spinal cord) are individual cells not directly connected to each other. Chemicals called neurotransmitters bridge the gap or synapse between each nerve, generated by one nerve and causing the receiving nerve to respond. Neurotransmitters such as noradrenalin and serotonin cause the nerve to fire, so they are called excitatory transmitters. On the other hand, the neurotransmitter gamma-aminobutyric acid (GABA for short) calms it down and can stop it firing altogether, so neutralising the excitatory effect. Each nerve has receptors into which the neurotransmitters bind. The GABA binds into its own receptor, thus exercising the sedating effect. The benzodiazepine also binds into the same receptor, and augments the calming effect.

The GABA receptor eventually adjusts to the presence of the benzodiazepine, and the combination is essential to the proper operation of the nerve cell. The concentration of GABA is not affected by benzodiazepines; they alter the affinity of the GABA for the receptor.

At this point the GABA receptor is said to be down-regulated. Withdrawing the drug leaves the receptor down-regulated, and the whole process of withdrawing and recovering from the drug is essentially one of restoring the GABA receptor’s proper functions so that it becomes up-regulated again. This takes time.

Fortunately there is little evidence that the drug causes permanent damage, so people can reasonably expect to recover their normal faculties.

I suspect that many people, including my wife, become dependent unwittingly. None of the five or so people involved in her treatment told my wife anything about the possible problems with long-term use. Our GP at the time provided repeat prescriptions without question or review. It is no co-incidence that the All Party Parliamentary Group on Involuntary Tranquilliser Addiction uses the word involuntary and that the Department of Health prefers to use the word misuse and holds that benzodiazepine addiction can be treated by similar means to addiction to heroin or alcohol, although it is patently obvious that this is not true. Some people taking illegal drugs also take benzodiazepines. These people’s addiction is clearly not involuntary. The drugs are also used to help people recover from illegal drug use.

When taken regularly people become tolerant of the drug and then dependent on them. By contrast taken intermittently for specific purposes does not necessarily lead to dependence. In fact when my wife was prescribed Lorazepam for a few months some years ago, she was able to drop them overnight with no discernable effect.

Tolerance

Tolerance occurs when the Central Nervous System adjusts itself so that the combined effect of the benzodiazepine and the GABA is reduced to pre-treatment levels. The result is that as soon as the benzodiazepine is withdrawn, the GABA receptor by itself is less effective and the excitatory neurotransmitters become more active, hence the symptoms which accompany withdrawal. The onset of tolerance is the predecessor to becoming dependent, and the sign that withdrawal is called for. Tolerance can occur in a few weeks or take several months. As with so much in benzodiazepine withdrawal it depends on the individual’s chemistry.

When tolerance is reached, the drug has less effect on the original condition, which can then lead to the need for an increased dose to produce the same effect. To a doctor unaware of this it may appear that the condition for which the drug was originally prescribed is getting worse rather than tolerance setting in. He would then be likely to prescribe a bigger dose which would seem to alleviate the problem but would only last until tolerance set in again.

Tolerance varies depending on the reason for its original prescription. Sleep, for example, may return to its pre-treatment state during tolerance, although anxiety probably won't, and may actually get worse with time. So the drug may appear to be efficacious for the former but not so much so for the latter. This probably explains why although my wife was taking the prescribed dose, she experienced some of the same anxiety symptoms as she had later when actually tapering off the drug.

When withdrawing, each cut (see Tapering below) is likely to result in withdrawal symptoms, and the CNS will attempt to readjust once more. At some point, in my wife’s case 3-4 weeks after the cut, the symptoms tend to stabilise and people then make their next cut. If the gap between cuts is very long, there is the risk that symptoms will re-appear although no further cut has been made. This is usually known as tolerance withdrawal and there is very little a person can do about it. It does mean that there needs to be a careful balance between cutting too quickly, which risks more unpleasant symptoms and cutting too slowly which risks tolerance withdrawal.

Dependence

By the time she had been taking Lorazepam for nearly two years, my wife was clearly dependent. Our GP at the time suggested she had been on the drug for too long and should come off it. He suggested replacing the 1-1.5mg of Lorazepam she took daily with 2mg of Diazepam to allow her to eventually withdraw. As we now know the conversion is sound in principle, since tapering from Lorazepam is very difficult for reasons which I shall cover later, but he prescribed entirely the wrong equivalent dose, and no gradual taper. The results were disastrous, and it was some months before we found out how to taper, and concocted a schedule with help from a voluntary group with considerable expertise. None of our subsequent help has come from the medical profession. They simply do not appear to know enough. The latest version – November 2013 - of the British National Formulary (BNF), the doctor’s “bible”, includes tapering advice for the first time.

The most important aspect of the dependence is that it happens while the sufferer is taking a therapeutic dose, one that is nominally safe. In my wife’s case she was advised that she could take up to 4mg of Lorazepam a day without any potential ill effects, but never took more than 2mg a day. Yet she became dependent just the same. Some of the withdrawal symptoms with which we became familiar later had already become apparent before she started to withdraw. Driving became difficult because she lost the concentration and co-ordination needed. Panic began to set in, so on one occasion we could only go into a local pub for lunch after she took 0.5mg of Lorazepam. We had to cancel a holiday. Needing an extra dose to cope with a specific event is not uncommon apparently. We heard of one person who needed 0.5mg of Lorazepam to allow her to go to the local supermarket.

Although dependent my wife was not addicted. Addiction is not just a neurological effect, as is dependence, but has a psychosocial component as well. Her daily dose was slowly increasing albeit very slowly, and well within the therapeutic limits. Since it was clear that the quality of her life was deteriorating, she decided to withdraw from the drug, which proved to be a difficult experience.

Many people keep taking the drugs because they have tried to give up and found it too painful, and they find that their life is easier while taking the drug. In effect the drug is serving to avoid the withdrawal symptoms which are difficult to cope with. Others having given up and then had to re-instate them. People on short-acting benzodiazepines can also get withdrawal symptoms between doses.

Benzodiazepine Dependence Compared

Benzodiazepine dependence is much worse than heroin or cocaine addiction for three reasons:

Firstly, it is involuntary. People take street drugs knowingly, but doctors prescribe benzodiazepines for longer than is safe, without warning the sufferer of the consequences. After a few months the drug will become ineffective and the sufferer will need to go on taking it, not for its therapeutic value, but because stopping can produce intensely unpleasant withdrawal symptoms. This will deter many people from giving up, particularly because they are likely to mistake the withdrawal symptoms for a recurrence of whatever illness for which they were being treated.

Secondly it takes much longer to recover fully from benzodiazepine addiction than street drug addiction. Unlike the latter, which can take just weeks, benzodiazepine recovery can take many months or years. Giving up the drug is difficult enough but is not the end of it, because the nervous system then has to repair the damage caused by the benzodiazepine, which takes time.

Thirdly, there is virtually no official informed support for withdrawal. Campaigns over decades have failed to persuade the medical authorities to provide the sort of support facilities available to street drug addicts. The Department of Health has recently promised local support through commissioning groups and local drug teams. However willing or concerned, these teams are unlikely to have the special knowledge required for benzodiazepine withdrawal. Involuntary addicts are not abusing benzodiazepines, and they need a different psychological approach. Support for involuntary addicts has been promised for nearly a quarter of a century and so far has failed to materialise. There seems to be no reason for optimism.

No one knows the precise number of benzodiazepine addicts in the UK, and the resources required to find out accurately are not made available. Estimates vary between 1 and 1.5 million people. The number of people in withdrawal and recovery is not known. By contrast the National Drug Treatment Monitoring System, which monitors street drug use, recorded just under 200,000 clients in treatment in 2012. They are supported by a nationwide network of drug and alcohol treatment centres. No such facilities exist for benzodiazepine addicts.

But there is good news. Much of the damage caused to the nervous system is temporary, and people recover. They often find this very difficult to believe and are convinced that their minds are going. But this is effect of the drugs temporarily distorting their rational minds which are still there and will recover. They need courage, belief and support to do so, and it takes time, but people who have recovered say that it is the best thing they have ever done, and is wholly worth the effort.

By this stage, my wife’s nervous system was dependent on the combination of benzodiazepine and GABA. Removing the drug meant that the body’s natural calming mechanism no longer worked properly. The result was that any trigger, external or internal, could produce a disproportionately extreme reaction both physical and psychological. Restoring the body’s natural balance takes time, often a lot of it, and can be painful and distressing. Giving up consists of three stages:

• Preparing - to give up
• Withdrawing - actually stopping the drug
• Recovering - undoing the damage the drug has caused to the nervous system

Preparing

Someone giving up must want to do so, is not being coerced into it, and must be made aware of any potential difficulties before they start. In other words they have to be in the right frame of mind. Coercion is more likely to lead to failure, particularly if the withdrawal symptoms are severe. The sufferer’s GP may advise them that it would be better to continue taking the drug if the side effects of the addiction are tolerable, thus avoiding the withdrawal process. This may sound like good advice particularly for older people who naturally have a shorter life expectancy. But people should be aware of the well-documented dangers of taking the drug, principally accidents of various sorts. It would of course have been better if the drug had been prescribed properly in the first place. People should also be aware that some doctors deny that benzodiazepines can actually produce these effects.

The carer must be equally committed since there are likely to be moments when the sufferer is convinced they will never succeed, and that is when the carer must offer the reassurance needed. My wife’s motive was that she wanted to be able to do the things she had previously enjoyed such as driving and so on, which the drugs inhibited. Neither of us realised at the time how long it would take to recover, but we were determined to see it through.

The sufferer’s GP will need to be consulted, principally because he will be the one prescribing the medication in the required doses. If withdrawal was his idea, and he understands the withdrawal process well and good, but either way, the process is the sufferer and carer’s responsibility and they, not the GP, will manage it. It is probably politic to keep the GP informed of progress, if for no other reason than to expand his knowledge.

Tapering is a long process, typically more than a year, so preparing a tapering schedule helps people to remember where they are and where they plan to be. It’s also comforting to know how much progress has been made. The schedule should not be followed slavishly. The plan must be tailored to the individual’s needs and circumstances. It will almost certainly require adjusting with experience, which the sufferer and carer will do as needed.

I have assumed all along that the sufferer will need a carer or carers. Some people manage to withdraw and recover on their own with little or no help. But everyone else is likely to need some level of support, which could include a spouse, family and close friends on a personal level, and support groups, professional counsellors and experienced advisors on a formal level. We have experienced all of these and found them valuable, but the amount of support will clearly depend on the sufferer’s attitude and personality. The important thing is that anyone in any support role understands what withdrawal means and be prepared for the vicissitudes which accompany it.

I have learned three important lessons from this experience:

• be patient – time is the only certain healer
• get as much information as you can; as the old adage says “if you think information is dangerous, you should try ignorance”
• be wary of doommongers; most people make a full recovery however difficult the journey

Withdrawing

The first lesson in withdrawing is not to stop taking the drugs all at once or within a very few weeks (“cold turkey”). The risks are considerable and can include fits, convulsions or worse, and extending the time taken to withdraw from the drug completely. People can end up in hospital and may do themselves permanent or long-lasting damage, and they are unlikely to save time in the long run. Many doctors seem to be unaware of the risks or deny they exist.

The safest method is to taper slowly off the drug. This takes time, often a year or more. The tapering schedule (see the next section) will consist of gradual cuts made in the dose until no more of the drug is being taken. Cuts of no more than 10% of the current dose are recommended which means that the amount of drug being cut becomes less and less as the withdrawal occurs. The problem with this rate of taper is time. It would, for example, take 2 years to cut from 10mg Valium to 1mg. We decided that a faster taper would suit us partly because of our ages (late 70s) and tapered from 10mg to 0mg in 15 months. Even this is slower than the rate suggested in the Ashton Manual (see Notes and References).

However careful the withdrawal, people can experience strange and varied symptoms, because, after all, this affects a large part of the nervous system. Symptoms are both physical and psychological, and they are listed and discussed in Part 2. No one is likely to get all the symptoms (which is just as well), but there seems to be no pattern to them. Just as people’s individual circumstances, temperaments, medical history and so on vary, so does the pattern of symptoms. This can seem a depressing picture, and to some extent it is, and we know many people who have these experiences, which sometimes appear to get worse as the cuts get smaller. The first message to a carer is clear. Benzodiazepine dependence or addiction can be inhibiting and destructive, and supporting someone through withdrawal and recovery is tough work. The second message is equally clear. The sufferer will recover.

Recovering

As with many aspects of benzodiazepines, there is no clear data about the distinction between withdrawing and recovery. It may be that stopping the drug very slowly allows some repair work to take place. Certainly stopping the drug immediately can extend the recovery period. What is clear is that after stopping the drug repair will happen.

This stage is often referred to as “post-withdrawal syndrome”, and two things happen. Firstly remnants of the drug which have been stored in the body are disposed of, and then the GABA system starts to become up-regulated. The former can take a few months, and the latter a lot longer. Timing is very difficult to estimate. This makes recovery in some ways more difficult than withdrawal, because of the lack of a schedule. Withdrawal guided by a tapering plan feels to some extent under control. This doesn’t apply to recovery. People talk about it taking anything from 6 months to 2 years, but attaching a timescale to it in any detail appears to be impossible. One measure is that when people are healed they tend to stop contributing to any internet groups to which they once belonged. Bliss Johns (see Part 3) says that in her extensive experience this happens within about 3 years, and if it doesn’t happen some pre-existing condition is probably to blame.

We assumed naively that once my wife was free of the drug, her recovery would be rapid. For some people that may be true, but in my wife’s case, the post-withdrawal symptoms continued for more than a year into recovery. Many people talk about waves, when symptoms are at their worst and windows, when improvements become visible. Symptoms certainly fluctuate in intensity, and during recovery new ones may appear and others go either spasmodically or for good. The main lesson for both sufferer and carer is “don’t be in a hurry”. Repair takes time and ultimately time is the only cure.

In the end the symptoms will go, sometimes quite suddenly, and sometimes slowly and erratically, perhaps imperceptibly. They may reappear from time to time in a mild form, but eventually they go. Managing this part of the process is difficult, but the carer should remind the sufferer that this is the last part, and being free of the drug and its after effects is the reason for going through all this in the first place. At least two people I know have said that after it is all over they hardly remember what it was like.

Updosing and Reinstatement

The general advice here is don’t do either. However people’s chemistry and circumstances are very variable, and there may be personal reasons where the withdrawal is intolerable and the only solution is re-instatement. I suspect that many, particularly older, people have tried withdrawal and had to give in because the distress is too great or support is not available.

If tempted to increase the dose, it would be worthwhile trying to stay on the same dose for longer rather than updosing. In any event it is very unwise to change doses rapidly.

The recommended way to give up benzodiazepines is to taper from the present dose to nothing in a regular way over a long enough period of time. As outlined earlier, one way to manage this is to have a tapering schedule which is a guide to withdrawal, but is subject to modification at any time, to accommodate changing personal circumstances. Withdrawal is a personal matter and depends both on the person themselves and their domestic circumstances. Flexibility is all important, and with withdrawal the unexpected is normal.

We used a 15 month schedule to take my wife from the equivalent of 10mg Diazepam to 0mg, making one cut a month, gradually reducing towards the end. When she started she was taking Lorazepam, a short acting benzodiazepine, and it soon became apparent that for practical and biochemical reasons she needed to switch to a long acting one, in this case Diazepam. This is the generally recommended route.

The practical reason is that Lorazepam pills are very small, and not made in small doses, so cutting one in half gives a dose of 0.5mg which is a large dose. We tried to cut the pill into 8 (0.125mg) which proved to be virtually impossible. We persuaded our GP to provide us reluctantly with the drug in liquid form, but it has to be made specially, is very expensive and loses its potency quickly. Some people concoct their own liquid solutions by compounding the powdered drug with water or some other liquid, sometimes milk, but then there is always the risk of doses varying in strength.

The biochemical reason is that since Lorazepam is a short acting benzodiazepine, it means that it is effective for less than 24 hours (average half-life 15 hours). Long acting ones such as Diazepam last up to a week (average half-life 60 hours). Since Lorazepam lasts for less than a day, covering the whole 24-hour period needs at least 2 doses, which will eventually become vanishingly small.

For both reasons the recommended approach for anyone on a fast acting drug is to change over to a long acting drug, such as Diazepam. Since the equivalent to 1mg Lorazepam is 10mgs of Diazepam, one dose a day of the latter is practicable and the cutting process is more linear. Pills are available in a range of sizes – the 2mg 5mg and 10mg sizes proved most useful – and it is available in liquid form as standard. This allows you to make the very small cuts needed at the end of the withdrawal accurately. My wife made the change from Lorazepam to Diazepam over a month. She changed a quarter of the dose each week but made no cuts. The changeover is stressful enough without cutting as well.

There is another reason for the changeover. As a person cuts, the nervous system is being deprived of the drug and complains, usually fairly bitterly. The complaints take the form of many different sorts of withdrawal symptom, most of which are very unpleasant. A short-acting drug taken once a day leaves the person substantially without its effect for the remaining hours. The result is that withdrawal symptoms can occur between doses, which is even more unpleasant.

The key to successful tapering is to take it gently. The carer should avoid any pressure on the sufferer to speed up the process. In the event of, say, a family crisis, the sufferer may feel the need to delay the next cut, until the crisis is over. That makes sense. However, temporarily increasing the dose is not such a good idea, because it disturbs the tapering pattern of slowly reducing the level of benzodiazepine in the body. If tapering in conjunction with a GP, make sure they don’t dictate the speed or pattern of the taper. That is the sufferer and carer’s prerogative.

There should be a minimum of 3 weeks between cuts, and the temptation to cut more frequently should be avoided. Too big a gap between cuts should also be avoided, because of the risk of tolerance setting in. We found that a gap of about 4 weeks suited my wife because in the first week after the cut the symptoms were at their most intense. During the following 2 weeks they calmed down a little, and in general by the end of the fourth week she felt able to tolerate another cut. Taking the dose in the evening seems to help people to sleep.

As I mentioned earlier, some times the withdrawal symptoms become intolerable, given the person’s particular circumstances, so they reinstate the drug to a level which allows them to function as satisfactorily as possible. Although not generally recommended, there is nothing to stop the person tapering at a later date, and ultimately enjoying a full recovery.

Finally the closer you get to the end of withdrawal the more pronounced the symptoms can get, presumably because the CNS is being deprived of more and more of the drug.

Medication

Withdrawing and recovering from this illness results in an astonishing range of symptoms, some of which may have occurred while taking the drug. Many of these symptoms are painful as well as debilitating, so not surprisingly, people ask about medication to help cope with them.

There are no licensed medicines currently available in the UK to counteract the withdrawal symptoms. One particular drug, Flumazenil, showed promise in the 1990s, and in a recent monograph from Professor Malcolm Lader, he asserts that further development of this drug is needed. Very few studies have been done but two done in Italy and Australia, on the slow infusion of sufferers withdrawing from benzodiazepines, have demonstrated the drug’s effectiveness in reducing the severity of withdrawal symptoms. The authors of the Italian study commented “one can only wonder why an innovative method which is rapid and effective has been so little used or studied over such a long period, despite the high prevalence and importance of benzodiazepine dependence”. They started a detoxification unit in 2003, and have been offering a treatment based on Flumazenil ever since, accounting for more than 50% of admission requests. To quote them again “pharmaceutical companies have no interest in highlighting these phenomena: all the old molecules are still the best-sellers. Even at conferences on addiction or psychiatry little is said about benzodiazepines, and even less about Flumazenil”.

Many people, including my wife, are given anti-depressants, most commonly one of the SSRI group (Citalopram, Sertraline etc). These can help to alleviate the depression associated with withdrawal and recovery. Ultimately people may want to stop taking them, which will involve another individual taper with associated unpleasant withdrawal symptoms, lasting for a further period of time.

Some medication is positively dangerous, notably quinolone antibiotics, and some is just ineffective, such as Gabapentin. It is structurally similar to GABA but its mechanism of action is not clear. Moreover, a sufferer could become dependent and then need to taper off.

Supplements

Not surprisingly people try all sorts of food supplements, herbal remedies and similar things which they find helpful, to ease the pain of withdrawal. My wife took paracetamol, which is useful for the aches and pains which sometimes accompany the main symptoms. Magnesium is said to help as are Epsom Salts in a bath, but whatever such treatments do medically, they certainly help to overcome the frustration of being unable to do anything to help yourself. They distract and that is very important, as we shall see later. But be warned. A supplement which you find helpful may have the opposite effect on someone else and vice versa.

One thing is clear. Supplements cannot affect the up-regulation of the GABA receptors, and any supplement that stimulates the nervous system may do more harm than good. The system is stimulated enough already.

A healthy diet will help recovery from any illness, and benzodiazepine withdrawal is no exception. The best advice seems to be to maintain a balanced diet, because it is likely to have all the components that the body requires, and not to be obsessive about it. Withdrawal produces enough anxieties without adding to them.

However, problems can arise in the stomach and intestines because of the general stress caused by withdrawal. So people suffer nausea, constipation, indigestion, diarrhoea and so on, most of which can arise under normal circumstances, and are susceptible to conventional treatment. So if, for instance, someone has an attack of diarrhoea caused by an intestinal virus, the normal treatment of keeping warm, drinking plenty of water, and replacing the lost salts would apply. If on the other hand, the problem is stomach ache caused by fear of some event, there is probably nothing the carer can do except be reassuring and sympathetic.

Some foods should be avoided, or consumed sparingly, principally stimulants such as tea, coffee and alcohol. A cup of black Java coffee just before bedtime would not be good idea for someone who has difficulty sleeping. It is probably enough to reduce the intake of stimulants rather than eliminate them, but my wife decided it was easier just to cut out wine altogether. There is some evidence that reducing the intake of sugar is beneficial, but that is probably a good idea in any event. My dentist would agree.

Exercise like a balanced diet is good for helping recovery, but again like diet it pays not to demand too much from your body at a time when it is devoting energy to repairing itself. Although violent exercise is not usually possible or desirable, gentle exercise such as walking undoubtedly helps.

We do simple balance exercises most mornings, which actually help the muscles, principally the leg ones which are unused in a sedentary life. Another valuable exercise is breathing. When anxious it is very easy to breath shallowly and quickly. Diaphragmatic breathing helps to overcome this, partly by distracting from the feeling. We use the 2 and 4 technique where you breathe in through your nose for 2 seconds and out through pursed lips for 4. Any form of deep breathing should help.

The difficulty with exercise seems to be that the amount a sufferer can do varies from day to day. People have said that one day they can walk around freely and the next they’re more or less confined to bed. Since presumably their actual physical ability doesn’t fluctuate as much as that, it means that the withdrawal process is to blame, which would make attempts to build up physical strength gradually as one would do normally are frustrated.

Gently exercising the brain also helps partly because common symptoms include losing the ability to read or write fluently. This is clearly frustrating so any activity, such as word games, puzzles, crosswords and the like can help to reassure the sufferer that their mind is still intact. However debilitating the symptoms, the rational mind is still there, and being able to recognise it is important. In my wife’s case she was quite capable of thinking about herself as if she was an observer, and analysing rationally what was happening to her.

Withdrawing from benzodiazepines is a difficult and long-winded process, and to a new carer will seem strange and incomprehensible. Unlike recovering from, say, a broken leg, there is no apparent logic to withdrawal and it produces many strange symptoms along the way. As I said in the introduction, I have tried not to paint too gloomy a picture, but forewarned is forearmed. However, there is good news. Much of the damage caused to the nervous system is temporary, and people recover. They often find this very difficult to believe and are convinced that their minds are going. But this is effect of the drugs temporarily distorting their real minds which are still there and will recover. They need courage, belief and support to do so, and it takes time, but people who have recovered say that it is the best thing they have ever done, and is wholly worth the effort.

To help someone through benzodiazepine withdrawal successfully a carer needs:

understanding and compassion
commitment
knowledge
patience
time
self-sufficiency

Understanding and Compassion. Withdrawal is a painful and distressing experience and radically changes sufferers’ lives. When a sufferer behaves in an unexpected way, they are not making it up, and indeed they have no effective control of the process at all, so the carer needs a sympathetic voice and attitude. There is no place for the “snap out of it” approach.

Commitment. The carer must be committed since withdrawal is likely to be a long process. There will be moments when the sufferer is convinced they will never succeed, and that is when the carer must provide the reassurance needed. The carer must be prepared for the proverbial long haul.

Knowledge. The carer must know about the way benzodiazepines work, why tapering is important and how it is done. They must be familiar with the broad spectrum of symptoms, and their meaning.

Patience. There will be times when sufferers become frustrated with progress and sometimes even aggressive, so lots of patience is called for. As we say, “it’s not me, it’s the illness”.

Time. Obviously carers will have varying amounts of time available. I am lucky to be able to be full-time, but many people won’t have that luxury. Caring takes more time than you might think. If the sufferer needs to talk things through, and talking is one of the most valuable tactics, it will take time, and the carer must be prepared to spend it.

Self-sufficiency. Outside support is limited which means that sufferers and their carers are thrown back on their own resources much of the time. Carers must be prepared to devise ingenious means of alleviating sufferers’ problems.

The simple answer to this is anything and everything. Withdrawal is not only painful, it is also demanding, and dictates much of the sufferer’s life and therefore the carer’s. The carer’s job is both physical and psychological and consists essentially of filling in the gaps in the sufferer’s life and supporting them during recovery. Doing the whole lot oneself is clearly demanding, and if the jobs can be shared, so much the easier.

Physical Jobs

Many of the things a sufferer used to do are now denied them by the illness to some extent and the carer has to make up for this. If, for instance, the sufferer’s symptoms are poor co-ordination and concentration, the impact of these two is very far-reaching. Many daily activities become affected or curtailed such as:

driving – too dangerous
eating out – becomes very messy
cooking – both dangerous and messy
dressing – too complicated
reading and writing – again too complicated

So the carer has to be prepared to provide some or all of these activities including:

laundry and organising clothing
dealing with correspondance and bills
shopping
dealing with tradesmen
helping with personal hygiene

In short, anything the sufferer needs to survive the recovery path as comfortably as possible.

Psychological Jobs

While recovering the sufferer will need continual reassurance and support through their many anxious times. They will also need protection because they are very vulnerable and easily frightened. This means that the carer will often have to act as a buffer between the sufferer and their friends and acquaintances, trying to explain to them what is happening to the sufferer so that they won’t misunderstand the latter’s behaviour. Our experience is that real friends remain concerned and supportive.

The next section deals with these points in more detail.

The most prominent feature of withdrawal is anxiety. In its acute form it is after all one of the reasons why a benzodiazepine is prescribed in the first place. Anxiety produces the most profound results. People report apparently quite unreasonable fears. They are afraid to go shopping, entertain a friend, or even just leave the house. Their lives become very limited. Fear becomes all pervading.

Fear

Fear of People and Events. These fears are very real to the sufferer and must be taken seriously. If someone is frightened to leave the house, it is because they see the house as safe and the outdoors as a threat. All sorts of normal events become threats, for example:

an unexpected visit from a friend
a sudden change of shopping trip
just going into a shop
almost any form of surprise however well meant
a misinterpreted facial expression.

Fear of the Present. Accompanying fears of others is fear of oneself. People suffer from feelings of hopelessness, and their moods are flat. The fear of impending doom is much more intense than any normal equivalent, and although often overwhelming, it cannot readily be associated with any specific worry or trigger. Moods also swing from optimism to pessimism very quickly in the manner of a bipolar disorder.

Fear of the Future. Sufferers have serious doubts about the future, so they say:

I’ll never get better
no-one else is suffering as much as me
it’s getting worse
will it really happen
what happens if the rest of my life is like this?
I’m going to die

The intensity and pain of withdrawal means that sufferers are certain to be somewhat pessimistic about the outcome, so the carer needs to be reassuring. But how? Withdrawal is unpredictable so a good day may be followed by a bad day, a better day or a similar one, in any combination. There is very little in the way of a reliable pattern. What is worse it is nigh on impossible to put an end date to withdrawal, so the inevitable “but how long is it going to take?” is pretty well unanswerable.

What the Carer Can Do

The carer then has a number of options, which are covered in more detail in the sections which follow, such as:

talk through the problem
distract the sufferer from the problem
use other people’s positive experiences and successes
remind the sufferer that the problem is the direct result of withdrawal
call on outside support
encourage exercise
help the sufferer to do things

My wife had poor short-term memory and so tended to forget the cause of her distress. I used to question the thought itself, reminding my wife by getting her to repeat the simple mantra “it’s not me, it’s the illness”. Sufferers are very wrapped up in themselves and the actual cause of the withdrawal gets lost in their minds. Reminding them that it is, or was, the drug which is at fault helps to alleviate any feelings of guilt they may have. These doubts are just thoughts and need to be put into a proper perspective.

At this point the carer’s support will be at its most stretched, and constant reassurance most needed. Sometimes persuading sufferers that the mood problems they face are also faced by many other people and they will eventually disappear will help, but many sufferers will find it difficult to believe when they are distressed, and so all that the carer can do is hold on and wait until things improve. Moreover sufferers seem to feel guilty as if the illness were their fault. At the risk of seeming trivial I use some simple mantras such as:

“it’s one day nearer the end”
“you will recover – it’s the natural outcome of the illness”
“it’s not your fault – it’s the illness”

These and smiling seem to help.

The lack of “official” support means that sufferers and their carers are thrown back on their own resources much of the time. Physical strategies such as diet and exercise are dealt with in Part 1. This section concentrates more on the psychology of coping.

People withdrawing from benzodiazepines are very sensitive, to everything from sudden noises to unexpected facial expressions. They will need continual reassurance and considerable patience from the carer. However bizarre their behaviour may seem, they are not making it up. The pain and distress are very real, and, as I said earlier, encouragement of the “snap out of it” variety will do no good and considerable harm.

Most people who have not come across the illness before find it difficult to believe that a prescription pill can wreak such havoc. We have made no bones about my wife’s state with friends, neighbours and acquaintances. As far as we know no one has actively avoided us, and many of the people we know ask after her health regularly.

As the dose of the drug decreases, however slowly, the slightest stimulus external or internal will set off the anxiety which can easily develop into full-grown panic in a moment. This in turn is likely to produce a pronounced reaction, which will result in some form of often unexpected and apparently unreasonable behaviour. All of this is because the GABA system is not working properly.

Supporting someone through this behaviour needs some strategies and tactics, and we believe that kindness and reassurance are the backbone of any strategies. They will need to be reinforced by individual tactics to suit specific circumstances, but we have found that two main strategies are essential – talking and distraction. In addition people use various techniques of their own to help.

Talking

Talking about the illness is important because the sufferer is living in his or her own head much of the time, and the thoughts arising from this can be overwhelming. It would obviously be disastrous if there was no outlet for these, and as is clear from the plethora of Facebook groups, people have a strong need to vent their feelings, seek reassurance, and look for guidance. Withdrawal and recovery are very isolating.

A carer will have to be prepared to do this whenever required, but having a particular time of the day to discuss progress seems helpful. We keep a daily log (more later), which I fill in at the same time. Each day we also log on to the Face book groups we belong to, reading and replying to the posts which concern us, and adding posts of our own. Sufferers will also want to talk at any time, so be prepared to turn off the radio or television so that you can give them your full attention. Talking can easily become exhausting, partly because sufferers tend to have poor concentration, and partly because it is quite possible to overdo the encouragement. If the sufferer is convinced that they will not recover, and most are at some stage or other, banging on about is unlikely to help. Achieving a balance is important.

Distraction

Sitting in a chair and brooding for any length of time is not very helpful, so some form of distraction plays an important role in caring for someone. Whatever the activities designed to distract, recovering from benzodiazepines is very tiring, so avoid creating any further pressure. Sufferers can react badly to any unexpected event, so springing surprises is probably not a good tactic. We tend to try to plan a day so that similar things are done at similar times. So our basic routine consists of domestic chores in the morning, followed by shopping, lunch followed by a snooze (we are very old!), various activities in the afternoon, dinner and television watching in the evening.

One of my wife’s symptoms is poor balance so that precludes activities such as walking, because the risk of falling is too great. She has fallen several times and managed to break her left leg on one of them. It was a more dramatic distraction than we had planned.

However there are lots of ways to distract a sufferer. Personal ways include reading, handicrafts, crosswords, puzzles and watching television. Social ways include visits (we have several friends who visit us), social networking, ringing friends and emailing. Going out for entertainment is more problematical. In my wife's case this created too much stress. The general rule about distraction seems to be do nothing which might precipitate panic, and don’t try anything new. Sufferers have difficulty learning new things. So don’t do anything dramatic such as moving house or organising mammoth family celebrations.

Techniques

Part of getting back to normal is doing as many things the process allows as recovery takes place. So if a sufferer has particular therapeutic techniques or hobbies they enjoyed, doing them again can help, but there is a proviso. Trying to do something and failing can be very counter productive. My wife is an experienced lace maker, but during dependence and withdrawal she was unable to do even the most basic stitches, which was very frustrating and depressing.

Some people find well-established techniques such as meditation and mindfulness help, particularly if they are familiar with them already. Any technique which eases the stress of withdrawal must be beneficial. Listening to soothing CDs sometimes helps which quite often just sends one to sleep. What a way to pass the time! Hobbies can also help, but they can be stressful if a skill possessed in the past has temporarily gone, because, for instance, the sufferer’s co-ordination or concentration is impaired. It would be better perhaps to stick to something less demanding for the time being.

My wife’s main symptoms were more or less continuous anxiety, frequent panic attacks, poor coordination and concentration, poor balance and the fluctuating skin burning sensation akin to sunburn mentioned previously. The result was that she was getting progressively less able to do things. Even simple everyday things such as cooking or ironing became more and more difficult. People taking benzodiazepines regularly talk about living only half a life, and slowly but surely our life, social, recreational and domestic, became more and more limited. Going shopping locally, seeing a handful of close friends in our house not theirs, watching television, and listening to the radio were about the limits of our benzodiazepine life. Doing anything likely to be remotely stressful is just not possible.

As anyone who has experienced withdrawal knows, it can produce a very wide range of symptoms, both physical and psychological, and the carer must be prepared for any of these in any combination. So if, for instance, you cannot concentrate and this prevents you from reading, you are likely to become anxious and depressed about it.

Under normal circumstances the GABA system unsupported by the drug would counteract any overreaction on the part of excitatory neurotransmitters such as noradrenalin, which is principally responsible for alertness and underpins the famous fight or flight response. But with the drug reduced or removed, a tiny stimulus from outside or inside the brain can cause a major overreaction, which could well seem totally unreasonable to an observer. This makes it difficult for the sufferer to tolerate, and often puts a strain on the carer. At this point the sufferer needs all the reassurance and understanding the carer can provide.

Since benzodiazepines were designed to alleviate anxiety, withdrawing from them increases the level of anxiety, and produces a variety of symptoms which may be more or less consistent, or come and go hourly, daily, or weekly – it is completely arbitrary. It is one of the main characteristics of this illness that its progress is unpredictable. However precise the tapering schedule, the process is not linear. Unlike other physical damage, the nervous system does not repair itself in an orderly way, at least as far as the sufferer can tell. So symptoms are likely to arise, then go, then come back, perhaps in a slightly different form, then go again and so on. It makes leading even the semblance of a normal life very difficult.

It is very difficult for people, particularly doctors, to believe that this wide variety of symptoms is all related to withdrawal. The range of symptoms is extensive and many, perhaps most, of them could be the result of another illness, which is why people in withdrawal have been misdiagnosed as having such disorders as bipolar disorder or dementia, and need to be very cautious if they propose to consult a doctor. If sufferers are referred for tests and the results prove negative, it is likely that it is the withdrawal which is the cause not some other illness. It is often difficult to know whether a symptom is the result of withdrawal or not, but a symptom which arrived during tapering or even when taking the drug is likely to be a withdrawal one.

We take most of our normal movements for granted. Assuming we are healthy, we can walk, talk, eat, sit, sleep and so on without thinking about it. Not so with benzodiazepine withdrawal. The normal mechanisms of concentration and co-ordination are disturbed so people suffer from poor balance and dizziness, have difficulty with a knife and fork, putting together a lucid sentence, concentrating on a conversation, remembering what they have just read; the list goes on and on. Forget running a household or doing a job. There are other more bizarre physical symptoms, such as the impression that one’s skin is burning for example, which feels like sunburn. People develop large stomachs “benzo belly”, muscle pains, fatigue, weak legs “jelly legs”, and many other oddities. They overreact to noise, or suffer perceptual distortion “seeing things”. For some people sleeping becomes difficult.

Above all people become confused, and find themselves living inside their own heads. The world has become a threat and the damaged nervous system is unable to cope with it. In some respects the sufferer is behaving like the wounded animal they are, and hiding in their own homes or heads is the only safe option.

For convenience symptoms are usually divided into two groups – physical and psychological. There is of course considerable overlap. If for instance you cannot concentrate and this prevents you from reading, you are likely to become anxious and depressed about it. There are many individual symptoms, and they often overlap, so to make explanation easier I have divided the two groups into sets of symptoms. At the end of each set I have suggested some ways which people have found helpful of coping with the symptoms.

The physical symptoms and how to help sufferers to deal with them are:

Balance, Co-Ordination And Concentration
Pain And Sensation
The Senses
The Body
Sleeping And Tiredness

Balance, Co-Ordination And Concentration

As with many physical symptoms these are unpleasant enough individually, but much worse when they occur in combination, which they do. They are often some of the last symptoms to go.

Balance. There are two components in balance – the eyes and inner ears, which tell the brain about the body’s present activity, and the posture which keeps the body upright, adjusting for changes of terrain and so on. The result of either of these getting out of sync is poor balance and/or dizziness, feeling unsteady on the feet, the room ‘spinning’ even when sitting or lying, feeling drunk, and both of these components occur during withdrawal. This leads to the risk of falling, particularly in older people, colliding with objects, inadvertently burning oneself, tripping, and general clumsiness. The dizziness can also lead to nausea.

Coordination. Allied to balance is coordination or rather lack of it. If anything this is even more frustrating, because for people who are normally adept, being unable to do such simple things as do up a zip or turn a key in a lock is infuriating. This affects many normal daily activities such as dressing, cooking, using a computer, driving or even walking. More complex activities, artistic, sporting, or social can all be affected. Eating out for instance is embarrassing if the food ends up on the floor.

Concentration. Activities such as reading become difficult since the illness deprives people of the ability to concentrate. This has many far-reaching implications, such as the effect on conversation. Chats become difficult to follow; topics are missed or inadvertently ignored and social embarrassment results. The effort of concentrating is tiring and the longer the conversation the worse it gets. The patient is unable to focus their attention, acquire new information, decipher directions or follow simple instructions.

Helping. All of the problems described obviously place strong limitations on a sufferer’s life. The carer needs to provide support literally by helping the sufferer to avoid accidents, not attempting any risky physical activity and using aids such as walking sticks. They also need to be emotionally supportive because the sufferer is likely to resent very strongly the fact that many of the things they did pre-benzodiazepine they cannot now do, and this is very frustrating. This is certainly true for my wife. Since time is the only certain cure, much of the withdrawal and recovery is essentially passing time. So the carer must try to devise ways to occupy the sufferer within the limits of the latter’s ability. Sometimes there is not much the carer can do except encourage whenever possible and refrain from taking over. As always balance is all-important. Planned exercises can also help.

Pain And Sensation

Pain. During withdrawal, dull aches and pains can be experienced in almost any part of the body including the muscles, lower, middle or upper back, face, arms and feet, head, forehead, soft tissue, teeth and mouth. Examples are the feeling of an imaginary band around the head constantly being tightened, muscles aching as if tired after exertion, a dry sore mouth, and facial numbness.

Sensations. Apart from direct pain people experience varieties of physical sensation which do not make much apparent sense. For instance, people report feeling insects crawling on their skin, when obviously there are not. Sensations such as burning skin, the feeling of electrical shocks, unexpected thirst, pins and needles, sweating, apparent temperature changes, hypersensitivity to touch are all reported. Sensations can appear on any part of the body, often the shoulders, back, hands and feet. Sometimes people are just hypersensitive to touch. One particularly strange sensation is the feeling of the brain moving inside the head. Not surprisingly tests done on sufferers tend to reveal nothing amiss.

Helping. Treating benzodiazepine-induced pain is difficult because the normal pain response mechanisms are not involved directly in the usual way. If, for example, you hit your thumb with a hammer, your thumb hurts because your brain says it hurts. Sensory neurons in your thumb send a message to your brain via the spinal cord, and the brain decides damage may have been done to your thumb. It also decides you need to do something, so you swear and feel better. But if like my wife you experience the common burning sensation which feels as if your skin is sunburnt, when quite clearly it isn’t, this does not seem to be part of the normal pain mechanism. As before your brain is telling you that you are sunburnt, but the message doesn’t seem to be coming from the nerves in your skin. Treating the skin with, say, Aloe Vera, which would normally relieve sunburn, may help or it may not. It seems to depend on your psychological state at the time. My wife has tried various things such as E45 moisturizer and Oilatum which you add to bathwater, but whereas both are pleasant in their own way, neither has any long-term effect.

The Senses

Vision. A common problem is blurred or double vision, which results in difficulty with reading, watching television, or just focusing on something going on around you. Eyes can be sore, dry, red, tired, or have a glassy appearance not unlike those of a street drug addict. They can be more than usually sensitive to light intensity in that everything seems unbearably bright, even leading to the need to wear sun glasses indoors. Sufferers are unable to look at computer screens. Worse is visual distortion where people start seeing things, flashing lights, inanimate objects appearing to move, people appearing flat, one-dimensional and paper-like, buildings leaning, floors undulating. Rapid changes of stimulus as occur during television advertising for example can cause sensory overload when the brain just can’t cope. My wife just used to go to sleep sometimes. Crowds can produce a similar effect.

Hearing. The hypersensitivity which applies to sight can also apply to hearing. Everyday sounds such as those produced by cutlery, crockery, people, and normal surroundings seem abnormally loud. Tinnitus also occurs in the form of a constant or intermittent ringing in the ears.

Speech. The principal problem with speech is that there seems to be a disconnection between the brain and the mouth. By the time sentences which appear perfectly lucid in the mind come out through the mouth, they have become distorted, with phrases scrambled or incomplete, and words missing. This is often aggravated by memory failures. The effort of concentrating on just saying something which makes sense is exhausting and makes a normally fluent conversation very difficult.

Helping. There is probably little that the carer can do to help except re-assure the sufferer that normal sensitivity will return. The solutions we have adopted are to avoid visual stimuli by simply looking elsewhere, or closing your eyes. Sounds can be muffled. The speech problem seems to come in waves of lucidity followed by confusion, almost certainly related to the inability to concentrate. The carer should listen without taking over, but prompt gently. This seems to help the conversation to run as smoothly as possible.

The Body

Heart. The most commonly reported symptom is palpitation, as well as irregular or rapid beating. The heart is said to be feeling as if it is jumping out of the chest cavity. These are usually associated with panic attacks and can be treated in the same way.

Lungs. Similar irregularity is reported for the lungs, namely breathing faster and deeper than necessary and hyperventilating. Also reported are sore throats and a choking sensation.

Digestive System. Sufferers report a wide range of digestive symptoms. The mouth feels dry and lacking in saliva, and there is a strong urge to keep drinking. Taste is distorted and can be metallic, and the nerves in the teeth and gums can hurt. Oesophageal spasms occur giving the feeling of a choking throat. The stomach is particularly sensitive to generalised pain and specific symptoms such as vomiting, reflux, nausea, and cramps. People’s appetite changes leading to unexplained fluctuations in weight. Cramps also occur in the abdomen, but the most commonly reported abdominal symptom is distension or bloating, described as “benzo belly”, when the sufferer has a potbelly or even looks pregnant. Both diarrhoea and constipation occur.

Limbs. On a par with benzo belly is “jelly legs” where the legs feel weak and rubbery as if about to give way. Problems with limbs vary from restlessness through to feeling like lead. People complain of uncontrollable tremors and twitching and other involuntary movements. They feel the need to move around and the overwhelming urge to move their legs when lying down. The opposite also occurs, where people’s limbs feel very heavy, and their muscles feel as if they have just done rigorous exercise. Their joints and muscles hurt.

Water Retention. People complain of fluid retention (oedema) taking the form of swollen feet, hands or eyelids, or generally looking puffy. This can occur with urinary problems, such as needing to urinate more frequently than usual, partial or complete incontinence, pain when urinating and bladder hypersensitivity.

Body temperature. Apparent fluctuations in body temperature occur, even though the thermometer disagrees. This is accompanied by fever-like symptoms, such asprofuse sweating, sometimes alternating with feeling cold, and pain in the joints or muscles.

Hormones. The normal hormonal processes seem to be upset causing menstrual irregularity and cramps, premenstrual tension, unexpected hot flashes. People also report a loss of interest in sexual intercourse and an inability to become aroused.

Fits. Fits (like epileptic attacks) though rare can occur but are usually related to withdrawing cold turkey.

Hair and Nails. Just to add to the list of unpleasant physical symptoms hair loss or breakage and a change in texture are reported. Nails can become discoloured, looking jaundiced or grey, and can become weak and split.

Skin. Intense burning feeling. Rashes.

Head. Feeling of a band round the forehead

Helping. Many people report going to their GP for tests for particular body symptoms, which is a wise move if in fact there is a separate problem going on. However both carer and sufferer must be aware that the GP may mistakenly diagnose an ailment which is actually a symptom of withdrawal, confirmed by the fact that tests often prove negative. More complicated are infections. People withdrawing are subject to stress, and their immune system is quite possibly working below par. At this point a visit to the doctor is called for.

Clearly many of the symptoms above may respond to conventional treatment, a laxative for constipation for instance. Others will probably have to wait until recovery is underway.

Sleeping and Tiredness

One of the most important correct uses of benzodiazepines is to deal with ACUTE insomnia. However sleep disturbances are a commonly reported feature of withdrawal accompanied by dreams, nightmares, and teeth grinding. Disturbances take the form of successive nights without sleep, too few hours of sleep per night, and waking up throughout the night, and then being unable to go back to sleep. Coupled with this is a general feeling of tiredness and weakness. People lack energy and any incentive to do things, are listless and lethargic. Waking up with a bang accompanied by panic feelings happens. Unpleasant dreams will recede as the brain repairs.

On the other hand some people find that they need very much more sleep at night and during the day, and report staying in bed for days at a time. Doing too much on one day can produce the need for more rest than usual on the following one.

Helping. Benzodiazepines inhibit dreams, so withdrawing encourages dreams and sometimes nightmares, so try to avoid any stimulants such as caffeinated coffee or alcohol, which could make things worse, before bedtime. Some people respond to soothing sounds or music, discs of which are readily available. The body has a strong attachment to ensuring sleep, so recovery will see sleep return to normal and nightmares recede.

The psychological symptoms and how to help sufferers to deal with them are:

Depression
Panic
Fear
Derealisation
Depersonalisation
Phobia
Anger
Cognitive Loss
Intrusive Thoughts

Depression

A common and consistent symptom of withdrawal and recovery is depression. People suffer from feelings of hopelessness, and their moods are flat. Moods also swing from optimism to pessimism very quickly in the manner of a bipolar disorder. As a result sufferers experience such feelings as:

I’ll have permanent brain damage
I’ll never feel normal again
nobody understands or believes what I am going through
I am alone and isolated
nothing interests me

These low moods sometimes produce crying jags, which the sufferer just cannot help, but in common with any emotional outburst can have a therapeutic effect.

Helping. At this point the carer’s concern will be at its most stretched, and constant reassurance most needed. Sometimes persuading sufferers that the mood problems they face are also faced by many other people and they will eventually disappear will help, but many sufferers will find it difficult to believe when they are distressed, and so all that the carer can do is hold on and wait until things improve.

Panic

Panic appears as unreasonable fear, adrenaline rushes, overbreathing and palpitations. People feel as if they are choking, unable to breathe or even dying. Obsessions occur. One that happened to my wife was the feeling that she was perpetually late for everything which had the result that we were getting up at a ridiculously early hour every day. Sufferers are very sensitive to unexpected sounds, people or events, and they can have intense crying spells for no apparent reason.

Helping. The classic treatment for panic attacks (apart from benzodiazepines of course) is diaphragmatic breathing, which is intended to overcome the hyperventilation which usually accompanies panic. One simple way to do this, which is useful wherever the panic occurs, is to breath in through the nose to a count of 2 and breath out through pursed lips to a count of 4. The idea is that it both gets the breathing under control and distracts from the attack to some extent.

Fear

Like panic fear can be both incapacitating and feel very real. It takes many forms such as:
being unable to cope with leaving the house
being unable to cope with visitors, even family
fear of driving
morbid fear of heights
fear of impending doom

These fears can seem to the carer to be quite unreasonable, and often have no obvious cause. We have taken the approach that facing a fear and overcoming it, which could well work under normal circumstances, would be quite inappropriate and too stressful, so avoidance is a better strategy.

Derealisation

Derealisation (together with depersonalization) is a perceptual distortion of the outside world often with no apparent stimulus, most famously induced in the 1960s by psychedelic drugs. People withdrawing can suffer from these distortions or hallucinations which take many forms from objects such as chairs moving about to one’s body falling through a bed. Normal objects assume imagined forms, and people feel as is they are seeing the world through a cloud or mist. They describe their brains as being immersed in fog. Sometimes the experiences are quite terrifying or threatening much like nightmares except that the people are not actually asleep. Derealisation is often accompanied by sweating and panic. Sufferers ask such questions as:

where am I?
why is there a goat in the corner of the room?
what’s wrong with the TV picture?

One effect of this distortion is sensory overload, for example being unable to cope with the visual and aural pressure of watching television. The brain seems to switch off. More complicated is the feeling of slipping between reality and unreality. So for instance “I know this room and recognise it, but it still doesn’t look right”.

Helping. As so often happens, the carer is left with few ways of dealing with this problem. Talking about a hallucination, aiming to reduce its impact and restore it to its proper proportion often works. Telling a sufferer that it’s all in the mind doesn’t.

Depersonalisation

People suffering from depersonalisation feel detached from themselves. They feel as if they are watching themselves act, without having any control over the process. Their world is dream-like; they feel distant, cut off, and in a surreal state. People talk about being an alien in their own body. It can be a very disturbing experience. Sufferers from this ask questions such as:

who am I?
who are you?
who are all these other people in the room? – when there aren’t any

My wife felt as if another person was living inside her, a sort of ogre attempting to prevent healing all the time. We nicknamed this creature “Benzo” in the hope that giving this thing a personality would help us deal with it.

Helping. This is a problem which seems to lend itself to just talking about the confusion, and slowly readjusting the confusion.

Phobias

The most common phobias are associated with the need to feel safe. Examples are agoraphobia, the fear of open spaces, and social phobia, the fear of having to communicate with people. For this reason people tend to stay in their own homes which feel safer. Outside becomes a threat, and includes the fear of having panic attacks in unfamiliar places. Being hypersensitive to the smallest stimulus just makes things worse.

Helping. The difficulty for carers when faced with, say, the sufferer being frightened by a potential visit, even from a close friend, is whether to cancel or encourage it. It is often a matter of fine judgement based on your assessment of the potential benefit of the visit.

Emotions

As so often happens during withdrawal, emotions can swing from one extreme to another without any obvious reason. It is one of the most difficult things for a carer to deal with, and requires considerable patience and understanding. On the one hand sufferers become angry, argumentative or just irritable. The uncontrollable crying mentioned earlier often forms part of this. They may feel the need to lash out. On the other hand their emotions can be blunted, almost anaesthetized. They feel flat, neither positive nor negative, and detached from their normal feelings. People blame themselves for their behaviour, when it is quite clear that the drugs are actually to blame.

Helping. Trying to deal with the sufferer’s moods is sometimes defeating. The sufferer can’t explain, can’t find the words, and the carer just has to guess. You will get it wrong, so be prepared to get a wet shoulder.

Cognitive Loss

Being unable to remember facts events or names, particularly in the short-term, is one of the most frustrating things that can happen to anyone. Unfortunately, it often happens to sufferers. Combined with poor concentration it makes conversation very difficult, especially when the conversation changes rapidly from one topic to another.

In general cognitive function is impaired. This takes many forms, such as the inability to learn new things, to retain or digest ideas or to make sense of something they have just read about.

Helping. A carer can do much to buffer the sufferer by filling in the gaps. Loss of memory can affect anyone, and it is often possible to make a joke of it. When the sufferer is losing the thread of a conversation, the carer can carefully re-iterate the missing pieces without stopping the conversation stone dead.

Intrusive Thoughts

To compound cognitive loss, people find themselves stuck in a particular line of thought which gets in the way of normal thinking, on a par with a tune which repeats itself over and over again and is impossible to shift. Such unwanted thoughts are often unpleasant and obsessive. Traumatic memories surface, people feel suspicious about others’ actions or motives, and worst of all, they feel that the only way out of the distress caused by withdrawal is to commit suicide. Unless a person has a previous history of contemplating or attempting suicide it is unlikely that a sufferer would actually try, but the thought is still powerful and real. Less severe but nonetheless intrusive is the conviction that an imaginary someone is trying to do the sufferer down, criticising and deriding their illness and attempts to get better.

Helping. These thoughts will decrease as the person recovers, so reassurance from the carer I called for. Improved sleep patterns are thought to help reduce these thoughts. It is also reassuring to realise that these thoughts, though unpleasant, are a sign of recovery.

Sufferers will get better; that much we know. Many of the symptoms which people have appear to have neither rhyme nor reason, but changes to them during recovery can be indicators of improvement, which will obviously help towards restoring the sufferer’s confidence and hope. As an example, I said earlier that benzos have a flattening effect on sleep, so if during recovery dreams start happening again it may mean that the sleep mechanism is repairing itself, until the sleep deficit caused by the benzo is restored. Clearly if one mechanism is repairing itself so will others be.

Everyone involved wants to know how long it will be before normal service will be restored, as it were. Unfortunately it’s an unanswerable question. This illness is quite unique to each sufferer, as each sufferer is himself or herself unique.

One way to help is to keep a record of events. It will at least show how symptoms have varied and which ones have gone. There is no guarantee that a symptom won’t return, but being able to track it gives some semblance of control. Withdrawal plays funny games on the memory, so we, like other people, found it useful to keep a record of events and feelings.

Some people keep an actual journal, which would be the right approach for people who like keeping diaries. I am not disciplined enough for that, so I decided on a daily log (below). On one line for each day I recorded the principal events, successes and disasters for that day. When a particular symptom was raging it dominated the record, so I was able to detect patterns of symptoms coming and going. When our recollections were faulty the log helped to put us right. After the taper was over, I added a small table to the log showing the daily state of the main symptoms, in this case sleep, balance, burning, breathing, concentration and co-ordination, with a general heading for how well the day went. Each item was scored 0-3 meaning bad, poor, OK and good respectively. Again it showed patterns particularly as symptoms began to disappear. For relatively little effort it gave one at least the feeling of knowing what was happening, and some indication of the trend towards improvement. It’s crude but reassuring.

Official Support

We have had a lot of support from other sufferers, as well as those who have been through the mill and are now helping others to recover. You will soon find out that official support from the NHS is all but non-existent. Even when a GP advises someone to stop taking the drugs, he or she is unlikely to know much about how to do it in the detail needed to do so safely and successfully. In fact although official guidelines have existed since 1988, and have been largely ignored, it was not, as I said earlier, until November 2013 that the BNF gave some details on safe withdrawal from the drugs. The information though welcome is insufficient in itself, and will always need augmenting from other informed sources.

People are referred to the local drug and alcohol teams, via the area clinical commissioning groups. Unfortunately as I said in the introduction, unless they have people experienced in the particular psychology of benzodiazepine addiction, the help they offer is inappropriate for involuntary addicts. For the most part drug addicts and alcoholics have to be persuaded to give up, possibly more than once. Techniques used by these teams include medication, and behavioural therapy, neither of which seems appropriate for benzodiazepine sufferers whose main desire is to be free of the drug.

Informal Support

That leaves four main sources of help - friends and family, voluntary support organisations, social network groups and books.

Friends and Family. Withdrawal and recovery are very demanding on the sufferer, many of whom cannot believe they will ever repair. They need continual reassurance and lots of talk therapy, all of which is also very demanding on the carers. It is often difficult for the carer to deal with the mood changes which withdrawal brings, and to understand what is going on.

Voluntary Groups. The voluntary organisations are few and far between, available on the phone and in person if in the sufferer’s area, and have a great deal of expertise. The chances are that the people you talk to have themselves been sufferers, and are very empathetic. They include:

Bristol Tranquilliser Project – www.btpinfo.org.uk
Battle Against Tranquillisers (BAT) – www.bataid.org/
Oldham Tranx - www.benzo.org.uk/otbh.htm
Council for Information on Tranquillisers, Antidepressants and Painkillers (CITAp) - www.citap.org.uk/

McCare.org (formally Baylissa.com)

Rest Project - https://www.facebook.com/REST.Project MIND in Camden - http://www.mindincamden.org.uk/services/minor-tranx

Support Groups. The lack of official support for benzodiazepine withdrawal has led to many self-help groups being formed. Thank goodness for the internet we say.

One of the earliest was BenzoBuddies ( www.benzobuddies.org ) based in the USA, and having more than 15,000 members. It operates as a forum, and contains so much anecdotal information that it has become the first port of call for many sufferers. The many successes as well as the horrible problems are extensively covered.

In both the US and UK there are support groups, mostly closed (private) on Facebook, providing day-to-day support, encouragement, and information. There are also support sites, such as https://www.beatingbenzos.com which is one person's account of recovery with a wealth of detailed information including other people's stories.

There is one downside however. Continuous contact with fellow sufferers can be overwhelming, so be prepared to take a break sometimes.

Books. Benzo.org has a list of books been written about benzodiazepine withdrawal, but the three have been invaluable to me – “The Ashton Manual” by Professor Heather Ashton, “Renewal and Recovery” by Bliss Johns and “Coming off Tranquillisers, Sleeping Pills and Anti-Depressants” by Shirley Trickett. Details are given below.

"The Ashton Manual” by Professor C Heather Ashton, one of the world’s foremost authorities on the subject, is essential reading. She has campaigned tirelessly for years for support for sufferers. ( www.benzo.org.uk )

“Recovery & Renewal” by Bliss Johns (Baylissa Frederick) in 2012 is based on her own personal experience of withdrawal, and that gained from the thousands of people who contributed to her website “Recovery Road”. ( www.recovery-road.org )

“Coming off Tranquillisers, Sleeping Pills and Anti-Depressants” by Shirley Trickett in 1986, an experienced nurse who was one of the earliest people to point out the dangers of the long-term use of benzodiazepines. Unfortunately the book is no longer in print but I got a second-hand copy from AbeBooks.

“Cracked” by Dr James Davies is very revealing and not a little disturbing about the science underpinning medical psychiatry.

“Benzodiazepines: The Still Unfinished Story”
A Speech by Professor C Heather Ashton DM, FRCP,
to the “Beat The Benzos” Campaign Launch Conference,
Croydon, London, England
Wednesday, November 1, 200
benzo.org.uk/ashspeech.htm