SOME THOUGHTS ON THE DURATION OF POST-BENZO ILLNESS, THE POSSIBILITY OF PERMANENT AFTER-EFFECTS, & WAYS OF LOOKING AFTER OURSELVES.
(This piece was originally written for the Benzo Protracted Group site on Yahoo)
(NB. The following article mainly concerns those who have experienced the severe end of the benzo illness continuum, both in terms of length of illness and level of pain. These people, as far as we know, are in the minority.
If you are currently taking benzoes and are considering coming off them, or if you are in early withdrawal, please remember that the vast majority of users do not experience the severe end of the syndrome and do not experience a protracted withdrawal illness. For those who do, handrails have been carved by the women and men who have walked the path ahead of you: seek their rich and valuable assistance, whether through their various print publications, via the internet, or through word of mouth.)
“So much is unknown ‘til the time has come - did you imagine you could ever be so strong...” Beth Orton.
I am prompted to write to BenzoProtracted to offer some thoughts regarding the duration of the protracted withdrawal syndrome. This syndrome is part of the ‘benzo illness’ continuum; a trail of pill-produced illness which can begin during benzodiazepine treatment and may continue in some form or other after withdrawing.
I appreciate that there is considerable knowledge and expertise amongst BP group members so please forgive me if some of what follows seems to be ‘chewing the chewed’.
Over the past months I have heard that certain benzo commentators in England are suggesting (once again) that the protracted, benzo withdrawal syndrome does not linger for more than two years i.e. if you are more than two years off pills and still sick, then there must be some other cause for your illness.
Such claims are nothing new and it is understandable that a well-meaning health professional or patient might come to such conclusions, simply because the benzo illness is a bewildering, confusing beast. It is still poorly understood, profoundly under-researched and easily misinterpreted.
However, my work over many years as a social researcher, educator and counsellor assisting those in recovery from benzo use has convinced me that there is no doubt that for some people the post-pill illness continues beyond the two year mark, for some considerably longer. A small percentage of people in fact seem to be left with some post-pill symptoms which, although they may improve over time, may never entirely go away.
Duration of Post-Benzo Illness.
There have always been attempts to put an arbitrary limit on the possible duration of the post-benzo illness.
Eighteen years ago when I began gradually reducing my daily dose of oxazepam, generalist drug and alcohol services told me that once I was completely off the drugs the benzo withdrawal symptoms would last perhaps two weeks, four at the most. As I continued to slowly taper my dose (the tapering process took eleven months) I came across new, equally authoritative claims suggesting the withdrawal symptoms could continue for up to three months. And by the time I finally came off the pills altogether the goal-posts had shifted again; I was told that I could be sick for six months.
Well, the six month mark came and went in an agony of continuing symptoms.
Then a new theory emerged: it became popular to suggest patients would be sick at the rate of one month for every year they took the pills.
Nevertheless, for me and for many others of those whom I’d met in support groups and through Tranx (now known as 'Reconnexion'), that deadline also came and went while our illness continued despite all our efforts to regain reasonable health.
As I approached the two year mark I heard news from overseas (England? America? I’m not sure) that the benzo illness would not last longer than two years. I clung to that.
When I hit the two year mark and was still terribly unwell, I saw red!
Why were we being fed this well meant but dangerous nonsense?
This business of incorrect withdrawal deadlines being repeatedly given and altered by various health professionals was one of the motivators for the social research we undertook all those years ago in the Benzodiazepine Research Group. The ex-patients were the ones who knew what was actually going on, and their voices weren’t being heard. The already difficult business of withdrawing from benzoes was being complicated horribly (and still is) by incorrect and anxiety producing information about withdrawal length, withdrawal symptoms and appropriate treatments.
I have worked with, advised, spoken with and met hundreds of ex-benzo patients over the years: I don’t believe there is any definitive cut-off date for post benzo illness.
Many, many sufferers are home free after a number of weeks or months, others regain good health after one or two years of illness. However for some benzo patients it takes much longer and the longer it takes the more bewildering it can become.
As life goes on, with its travails, ageing processes, illnesses and behavioural adjustments, it can become harder to differentiate between a clear, pill related effect on ones health and the effects of other life-influences. Nevertheless for some, it seems to me, the debilitating pill influence definitely continues.
I have been led to believe that the benzodiazepines tamper with the entire central nervous system, leaving certain ex-patients hypersensitive and inappropriately responsive to stimuli for years afterwards. Australian benzo expert and pioneer, psychiatrist Dr. Jean Lennane, points out that damage to fine nerve endings can take many months to heal and she wonders whether it might partly be a phenomenon of this kind that is operating in prolonged withdrawal illness.
(Certainly many simple treatments which involve fundamentally nourishing and replenishing the nervous system and gently soothing and supporting the body have been found helpful for those in recovery.)
British pioneer benzo-educator Shirley Trickett suggests another explanation for prolonged benzo illness. She has written extensively about the ex benzo patient’s susceptibility to candida, chronic fatigue syndrome and various insidious viral infections. These conditions may not strictly be benzo withdrawal ‘symptoms’ but the toxic effects of the pills can open the door to these conditions. Ms. Trickett suggests these piggy-back ailments can seriously complicate the recovery process and prolong the period of benzo-related illness. She tells us that such conditions often gain a foothold as a result of long-term benzo use, or during withdrawal, leading to difficult and stubborn ongoing health problems. (Shirley Trickett’s books outline self-help programs for these benzo-related problems as well as providing sensible practical assistance for those wishing to come off pills.)
But we still don’t know exactly what the benzoes do to the body; their subtle operations, their many long term effects and after-effects. We ex-patients are all in the process of finding our by personal experience. No pharmaceutical company has researched this area, it is still largely terra incognita.
Those who refute the idea of a prolonged benzo illness typically suggest that sufferers are blaming the benzoes when other, unrelated health problems or pre-existing psychological issues are the real cause.
This may be true in some cases. I have certainly met people, living with other health problems, who seem to me to confuse those other conditions with their benzo experiences, blaming the benzoes for symptoms which may not be attributable to the drugs.
I would imagine most weary, confused, long-term benzo sufferers have questioned at one time or another whether they might fit that scenario. In my opinion, the vast majority don’t. My experience has led me to believe that the vast majority of long-term sufferers are sick with a real benzo-related illness.
However I do think that protective behaviours learnt during the months or years of pill-taking and during early withdrawal can sometimes become hindrances as recovery progresses.
Many of us, during the months or years we were taking benzoes, were very sick with the toxic side-effects of the drugs. Many of us learnt, incorrectly, to attribute those harmful benzo effects (from anxiety to digestive problems, visual disturbances to panic attacks) to our own psychology or supposed hypochondria, so we kept on taking the pills unknowingly making our situation worse.
During those months or years on pills we may develop beliefs and coping mechanisms in order to deal with the peculiar (unrecognised) benzo illness and entrapment. Many of us, particularly if we were on benzoes for a long time, felt increasingly broken, vulnerable and full of self doubt. We learnt to be guarded, fearful and timid and were often emotionally distressed. In short, benzo use can change us and alter our behaviour!
Then, when we discover that the pills may be the problem and we decide to withdraw from them, some of us have found ourselves enduring the physical, mental and spiritual chaos of a particularly severe withdrawal illness. This can leave us profoundly frightened and shell-shocked. (N.B. appropriate support, information and GRADUAL reduction of dose ought greatly diminish severity)
In order to protect ourselves in the early days of the withdrawal illness we may have become very self protective and hypervigilant to our symptoms and anything which impacts on them. The world can seem to be packed full of things to be avoided - foods, noises, lights, textures, environments, weather, people, etc, etc. This is logical; a grossly over-sensitive and wildly over-stimulated system seeks to avoid further painful stimulations and aggravations.
But as the months and years go by, even though the post-benzo illness might still be with us in some form or other, that vigilant self-protectiveness may need to be re-examined, as may some of the beliefs and behaviours which we adopted during the period when we were still taking pills.
Much of it falls away naturally as one’s health improves however I noticed in my own case that a long time after I came off pills I still held on to a profound guardedness as I made my way through the world. This was understandable given the past trauma but now it was causing me problems. Gradually I came to see that my ongoing wariness was impeding me and, in a way, was making me feel unwell. I was subtly holding myself in a state of protective, anticipatory anxiety which was actually unnecessary and which was stopping me from experiencing some of life’s ordinary pleasures. But its a delicate dance because these learnt defenses can only be dropped when they are no longer needed and for some of us they are needed for a surprisingly long time.
For myself a significant, ongoing, part of the healing has been learning to trust the world again; in the chaos of withdrawal, so much of the world, because it was an endless source of unpredictable stimulations, seemed dangerous.
Benzo withdrawal and recovery is an individual process. The most painful or worrisome symptoms for one patient are not necessarily the dominant symptoms for the next person. While most of us who cop a bad withdrawal suffer from a bewildering array of symptoms, some of us will be chiefly plagued by muscle pain and spasm, others suffer most with forms of disorientation, depersonalisation etc., while still others find their withdrawal illness dominated by anxiety or fatigue, or ‘electric’ sensations, or digestive problems and on it goes.
And it appears that even though the benzo illness generally improves over time, a number of the benzo withdrawal symptoms, whilst gradually easing in severity, may nevertheless have the potential to become long term problems. Just how often this occurs is still unclear but anecdotally this is what we see over and over again; a small number of people finding themselves stuck with a particular symptom or cluster of symptoms for years.
For some these residual symptoms may only surface during times of stress or illness, for others they are relatively constant, either as a significant, interfering, daily reality or as a faint, niggling backnote to one’s ordinary activities. Although the accepted wisdom has been that in the vast majority of cases, even long-standing symptoms will eventually improve and in time completely disappear, it has also been thought that in certain unusual cases some long-term symptoms, though improving with the passage of time, may not entirely resolve; the implication being that any lingering residue would be relatively inconsequential.
So, you either recover completely or, if you are unlucky, you might eventually get stuck with some relatively minor, benzo memento.
But I wonder whether the passage of time is revealing another possibility?
Some of us, many, many years off pills, appear to be finding ourselves stuck with more significant ‘mementoes’; symptoms which are by no means minor.
Sure, post-benzo symptoms can sometimes take years to dissolve but when its been 15 years or more and, despite a fair degree of recovery, certain symptoms are still alive and kicking, it seems reasonable to begin wondering how much more improvement we can reasonably expect.
Permanent After-effects?
Because most people do eventually recover well, workers have tended to emphasise this fact when counselling benzo sufferers. But in doing so we run the risk of marginalising and neglecting members of our benzo family who, many, many years off pills, have not made such a successful recovery. They may well be quite few in number, and various benzo or non-benzo factors may be involved, but we don’t actually know because, to my knowledge, no systematic study of this particular population has been done.
Since last winter I have found myself in contact with four of my old benzo work colleagues from the early 1990s; three in Australia and one in Europe. Each of them is also an ex-benzo patient and each of them knows the benzo scene inside out. During the past year I also bumped into one of the research participants from my early days at the Benzo Research Group.
When I’d last been in touch with all these people, in the mid 1990s, each of us had recovered considerably from our benzo experiences. We had been slowly improving for some years and probably believed we would eventually say goodbye to benzo illness for good.
However, as our recent conversations unfolded, I was concerned to discover that, like myself, all five of these people, many, many years off pills (min. 16 years, max 22) are living with ongoing health problems (noticeably, though not exclusively, fatigue related) which they attribute, at least partially, to the benzoes. The important point here is that for at least three of these people the problems are significant, they are not minor.
Are they stuck with them? Can we truly blame the benzoes?
Its a tricky business. As I said earlier, it gets harder, as years go by, to separate possible, long-term, benzo symptoms from the symptoms of life’s other harmful influences.
One of my ex-benzo colleagues told me she used to lay the blame for her chronic fatigue problems wholly at the door of the benzoes. These days, however, she wonders whether she may have had a predisposition to develop chronic fatigue syndrome anyway; the benzoes simply being the catalyst for something which could have happened in some other manner.
Another of my colleagues agreed that he had problems before he ever took benzoes. But he reckons prescribing the drugs for someone like him was like hitting him over the head with a baseball bat because he’d complained of a headache i.e. the ‘medicine’ wasn’t the beginning of the problem but it made things considerably worse.
In my own case I live with a marked, chronic fatigue condition. Was it caused by the benzoes? There were signs of unusual fatigue during the years I took oxazepam and then it struck me down with an absolute vengeance when I withdrew from that drug, radically incapacitating me for two years at least. A chronic sense of exhaustion/depletion has stayed with me in some form or other ever since. While it is possible that other causal factors may be involved, I tend to associate the problem significantly with my use of benzodiazepines.
I also live with a certain deficit in my ability to retain information, to recall information, or to concentrate for long periods: these are well documented post benzo symptoms and in my case they definitely made there first appearance during benzo withdrawal. It’s been 18 years now and although these symptoms are not getting any worse, they’re no longer improving: I live with the hope that they might, but perhaps they won’t.
Which isn’t to say I regret coming off the pills; I still believe that coming off benzoes was one of the best and most productive things I have ever done. My perspective on life and humanity altered remarkably and the challenges of that experience enabled me to develop capacities and abilities I never knew I had. It brought me in touch with the extraordinary members of the worldwide, benzo family from whom I’ve learnt and received so much. But it also appears to have left its marks on my physiology.
So, I live my life and manage the symptoms. But the symptoms I live with are definitely not minor. Manageable, not minor. I wonder if certain longer-term BenzoProtracted members have a similar story to tell.
I don’t wish to be alarmist but I believe this area needs to be discussed more openly and examined more carefully. Most ex-patients probably won’t wind up stuck with super-protracted symptoms but for some it may become a reality.
How many others are already out there? These people must be acknowledged and their stories collected.
Are there predisposing factors? Is it that other circumstances in our lives have impeded our recovery? Or is it a largely benzo thing? Is it only certain kinds of benzo symptoms which may go on to become super-protracted problems?
More work needs to be done to examine the specifics of the longer-term, possibly permanent consequences of benzodiazepine prescribing. I am currently investigating funding options in order to undertake an appropriate research study.
Its been hard to get a clear picture of the long-term after effects of benzo illness partially because, once through the intensity of early withdrawal, many patients are so relieved to be coming out of that chaos, and are so excited to be pill-free and to be re-discovering what seems like a brand new world, that the residual ‘bits and pieces’ of benzo illness are often minimised. And many ex-patients don’t want to stay in touch with support groups and services so we seldom hear what happens to them over the long haul.
Looking after Ourselves.
So even though many of us attest that coming off tranquillisers was a great thing to do, and even though many of us have experienced a wonderful rebirth, some of us live with enduring after effects.
Whether or not they will eventually go away (and remember, in the vast majority of cases they probably will) the trick is to find a handful of attitudes and techniques which will help manage and minimise their effect.
Common-sense principles of healthy living do help: eating fresh healthy food, undertaking gentle non-invasive exercise, seeking kindly human company, living a life of moderation, being gentle on oneself, getting plenty of rest, avoiding too much isolation (some solitary time is of course necessary, beneficial and nourishing), finding non-exhausting ways to contribute to one’s community, friends or family, and utilising a system of expert health care (conventional, alternative or a mixture) which is in sympathy with your needs and beliefs.
Seek opportunities to talk openly and honestly about what is going on in your body and mind, to ‘get it off your chest’ whether with friends, in support groups or with a counsellor.
Startlingly ordinary experiences or behaviours can serve as potent and unexpected, ongoing ‘treatments’ - their value and effectiveness ought not be underestimated! If we’ve spent a long time relying on pharmaceutical medicines we may have learnt to devalue life’s ordinary ‘medicines’; acknowledging their value allows us to better access their healing potential. Digging the garden, walking in nature, floating in water, or spending quiet time with truly caring friends are actually powerful medicines for many. Some people have discovered that gentle, human touch (whether from friend or masseuse) relieves symptoms and enhances well-being. English benzo therapist and author Shirley Trickett has used therapeutic touch and massage extensively with benzo patients.
Its a matter of finding the particular combination of activities, behaviours, remedies and attitudes, which works for you. Most of we benzo people have discovered the hard way that a treatment which helps one person can make another worse.
We ex-benzo folk can be highly sensitive and quirky in our responses; one person loves massage while another finds it irritating and uncomfortable, someone swears by counselling while another cannot stand it, someone loves long walks but another is badly exhausted by them. Its a matter of trial and error.
Many find that prayer and meditation are healing as well as being broadly transformative and revelatory. In fact most of the world’s ancient religious traditions contain highly sophisticated knowledge about the nature of human suffering, its patterns and resolution. Unfortunately there is sometimes the mistaken impression that religious institutions and practices are all about escaping the ‘real world’. The truth is that within these traditions, beautiful, powerful practices have been developed over centuries to gently assist suffering individuals and communities. Nuns, monks and priests are often quiet repositories of such wisdom. (And of course there are dodgy religious/spiritual helpers out there as well so let your common-sense guide you.)
Libraries are another great resource - books and videos are full of information and personal stories from which people gain strength and useful knowledge about their circumstances and about human resourcefulness in difficult times. Art making (painting, dancing, poetry etc.) has helped many in the easing of their ailments.
Investigating and altering one’s negative attitudes and beliefs can be liberating; learning to gently undo a mindset of fear, mistrust and resentment and to foster one of trust, gratitude and acceptance of reality (acceptance is not to be mistaken for complacency or resignation).
On the other hand, a determinedly positive ‘Pollyanna’ mindset which runs the risk of suppressing our pain and emotional difficulties, may trip us up if it goes unexamined.
If we look about us, we find a wealth of riches to draw on: those I am mentioning here are just the tip of the ice-berg. If we let it, our individual ingenuity guides us to an unlimited range of highly personal, perhaps quite unusual medicines. These can have great potency. One woman always kept a single flower in a vase on her window-sill, looking at it every day during early withdrawal. “That is what got me through” she told me. Others knit, sing, swim, sleep or simply go on with their lives trusting that things will eventually sort themselves out.
Many folk tell of the wisdom, insight and personal growth which has come to them as a result of enduring traumatic times. True compassion for others is another oft-mentioned by-product of such experiences. Trying to run away from pain doesn’t seem to work. Learning to live with it, and live through it can bestow unexpected riches. (And collapsing in a heap sometimes is pretty normal too.)
Each individual looks carefully and listens to their own body to find what works for them. And there is no such thing as a magic wand: sometimes, (particularly in the difficult days of early withdrawal, or during bad bouts of recurring symptoms) the most a technique or treatment will do is take the edge off or provide a little reassurance, allowing time itself and the innate wisdom of the body-mind-spirit to do its own gradual, painful, revelatory re-balancing work.
I am reminded of a letter I received when I was nine months off pills from a fellow who was further down the path. He had endured a shocking withdrawal. He wrote that he believed we benzo pilgrims were a rare and very special bunch, that we had suffered experiences which most other people couldn’t imagine but that these experiences taught us amazing lessons about ourselves, about the business of being alive, the capacity of human endurance and the nature of human suffering. He believed that we were made strong and deep by our benzo experiences and because of this we had great things to offer to others, not necessarily in grand ways but in our own ways, at our own pace, and in our own time.
May we all find the healing we need.