Encouraging a Patient to Withdraw
Patient Vernacular: Windows and Waves
The Post-Taper Recovery Period
As shown in the Dependence page, longer-term (>4 weeks) use of benzodiazepines often leads to physiologic dependence. Benzodiazepines also frequently generate adverse effects and/or they are no longer an effective treatment . Due to their effects on receptors, stopping the use of benzodiazepines can be challenging. In most cases, however, it is very important to taper off of these agents.
While in the process of discontinuing benzodiazepines, a wide and variable range of symptoms can develop. Collected together this is called a withdrawal syndrome. An excellent description can be found in “Benzodiazepines: How They Work and How to Withdraw” – also known as the “Ashton Manual”, authored by Heather Ashton, MD, more than 25 years ago, which is readable by patients and practitioners alike. It is augmented by a follow-up publication by Dr. Ashton, the Ashton Manual Supplement.
In clinical practice it can be difficult to determine whether or not a patient’s symptoms are due to benzodiazepine withdrawal, or to something else. Symptoms can be interpreted as rebound or relapse of the condition (e.g., anxiety) for which these drugs are being prescribed or perhaps the development of a new condition (e.g., insomnia). Withdrawal from most addiction-prone substances – like alcohol – results in a gradual decline in withdrawal-related symptoms followed by complete resolution. For benzodiazepines this is not necessarily the case and can be very confusing to clinicians. Patient responses to tapering and discontinuation are highly variable, though there appears to be specific overarching patterns:
4) A mix of patterns 2 and 3 above with with spikes in withdrawal symptom severity that overlies these patterns – likely the most common case for BZWS sufferers.
Note that with patterns 2 through 4, resolution can range from full (no symptoms) to partial (highly variable ongoing symptoms).
Encouraging a Patient to Withdraw
Many prescribers report that they have long-term benzodiazepine users who have a variety of complaints that the prescriber believes are related to benzodiazepine tolerance. They want to taper the patients off the benzodiazepines, but the patients are convinced that they need the drugs, and that their symptoms must be related to other diseases. This presents a dilemma. Continuing the prescription of benzodiazepines will please the patient, but not cure the problems. On the other hand, mandated tapers, without complete understanding and assent by the patient, often fail.
The solution revolves around patient education. Patients must first be shown that their symptoms are part of the well-established phenomena of tolerance and benzodiazepine withdrawal syndrome. This often requires the physician to address messages of safety and intrinsic need for benzodiazepines, which patients have heard from other physicians who are unaware of the dangers and symptoms of physiologic dependency. For long-term benzodiazepine users, this is a tidal shift in thinking, and will take time, reinforcement, and assurance that the prescriber will help them though the withdrawal and recovery processes.
Managing Withdrawal
Various means have been employed to help in the discontinuation process. Abrupt cessation is not recommended for those who have been taking the drug for more than four weeks. In fact, it can be dangerous, resulting in seizures and death. Tapering is far safer and more likely to be successful. This can take a long time, and it may be best to plan for an 18-month process – sometimes longer – particularly if benzodiazepines have been taken for a long period of time.
Preparation is critical. Patients typically need a lot of support from family, friends, and ideally, peer coaching. Informed consent means all involved – including the physician – should know and understand what to anticipate and the nature of the process – all established through shared decision-making. Expect bumps along the way that require adjustments. The use of Cognitive Behavioral Therapy (CBT) can be valuable, and adjunctive medications (see list) may be considered.
If not already using a long half-life benzodiazepine like clonazepam or diazepam, transitioning to an equivalent dose (see Table) of either of these agents prior to tapering often allows for a smoother tapering process. Diazepam, in particular, because of its dosing options, is a good choice. When undergoing a taper, patients often experience an increase in symptoms after each reduction in dosage. Sequential reductions can be made periodically as long as the patient has a pause in the intensity of the withdrawal symptoms between reductions. Avoid formulaic plans which reduce the dosage to zero in a fixed amount of time. Patient compliance rates are increased and patient discomfort is reduced when you factor in the patient’s experience and adjust the taper rate accordingly.
When opioids are tapered, short-acting forms of those medications can be added to ameliorate the withdrawal symptoms while the long-acting opioids are decreased over time. This strategy, however, is not recommended for benzodiazepines because of a central nervous system process called kindling. Though not well understood, it appears that benzodiazepine exposure “primes the neurophysiologic pump” such that for some individuals following dose reduction, periodic additional “as needed” doses may light the fire of withdrawal symptoms, making subsequent reductions more difficult.
In another clinical circumstance of kindling, there are patients who, having had minimal if any withdrawal symptoms, have far worse withdrawal severity if they restart benzodiazepines and attempt to stop again. This can get worse time and again with each attempt at discontinuation after re-initiation. Such a phenomenon is also seen in some individuals with alcohol problems in which such kindling is better understood.
It is as if the nervous system has a “memory” of the withdrawal(s) and/or damage from a substance like benzodiazepines. This “memory” of prior withdrawal(s) and/or damage somehow remains “imprinted” within the nervous system. Subsequent withdrawals and/or damage are worse because the nervous system “recalls” that it has been sensitized or damaged in prior withdrawal(s) in an accelerated fashion with an intensification of anxiety, fear, cognitive impairments, and other psychological symptoms. Indeed this process may well be the etiology of the increasing difficulty persons face the longer they continue to use benzodiazepines, even if only episodically.
Currently, it is not known how to predict who might experience such nightmare scenarios. Consequently, it underlines the importance the following recommendations whenever possible:
- Limit initiation of benzodiazepines,
- Limit duration of benzodiazepine use,
- Avoid the use of as needed or “prn” benzodiazepines during the tapering process, and
- Avoid re-initiation of benzodiazepines after complete discontinuation.
Indeed, prescriber adherence to prescription guidelines for benzodiazepine use would negate most of the risk of kindling, except for a minority of patients who develop physiologic dependence within a period of time shorter than 4 weeks. In turn, this would in most likelihood minimize the enormous burden of what could be termed benzo-brain injury experienced by far too many.
There are several good references for methods to come off of benzodiazepines. The best place to start for both prescribers and patients is the Ashton Manual, to date the best and most complete work on the subject. However, tapering is a very individual process. Some people can taper per the plans in the Ashton Manual, while others find that, in order to avoid debilitating symptoms, they must taper more slowly than what the manual recommends. Many other resources are available at the For Prescribers and For Patients pages in this website, and all are encouraged to explore this website’s extensive library of articles that are divided by topics. Click here to access the reference library, which provides links to over 1000 benzodiazepine-related scholarly papers.
Patient Vernacular: Windows and Waves
If your patient has self-diagnosed their physiologic dependence on benzodiazepines, there is a good chance that they have done it via internet searches and contacts. There is a set of well-established terms in common use in the online benzodiazepine withdrawal sufferer community. Prescriber-patient communication can be eased and facilitated when the prescriber takes the time to understand these terms. Among these terms, “windows” and “waves” are particularly important. The evidence-based literature does not use this terminology, but does speak to spikes in severity of symptoms .
During withdrawal (whether due to tolerance or tapering) and recovery, patients often experience an irregular, unpredictable cycling between relative lessening and exacerbation of symptoms. This cycling can occur in a very short time (minutes), and can range to a substantial time (months). Which symptoms increase or decrease in any of these cycles is also unpredictable. The cause of this cycling has been the subject of much speculation, and is one of the areas of research by the Alliance (see Initiatives).
The lessening of symptoms is termed a “window”, as in a window to the patient’s condition prior to exposure to benzodiazepines. The increase of symptoms is termed a “wave”, as in being engulfed in a wave of symptoms.
The Post-Taper Recovery Period
Unlike many other medications, there is often a significant period of time after the taper is complete where patients still experience a variety of the same symptoms they had while tapering. This can extend well beyond the time where there is any active benzodiazepine or metabolite present, sometimes for years after the completion of the taper. Thus, the physician’s job is not done once the taper is complete. The physician must also assist and guide the patient through this critical recovery period.
Patients in post-taper recovery often report new symptoms, or (less frequently) symptoms that have increased beyond the levels experienced during use or taper. While these symptoms can usually be found on the list of overall benzodiazepine withdrawal symptoms, this still presents a dilemma for the physician. Given the wide variety of withdrawal symptoms, other diagnoses may be indicated for the current complaints. When do you attribute the symptoms to withdrawal/recovery, and when to you pursue another possible diagnosis? Unfortunately, there is no guideline for this process. This determination is usually made based on the experience level of the physician in the area of benzodiazepine withdrawal and recovery. We would like to suggest a simple heuristic: complaints that follow the increase-decrease pattern of waves and windows are more likely to be associated with benzodiazepine withdrawal or recovery. When not emergent, “reassure, wait and see”.
Note that, unlike most addiction-prone drugs, there is little evidence of post-taper patients craving benzodiazepines. Most are seeking relief from the ongoing symptoms of physiologic dependence.
