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.
