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.
