My name is Nicole. I am a physician assistant, although I have been unable to practice since the summer of 2010 due to iatrogenic illness—illness that resulted from taking benzodiazepines for about five years, only as prescribed, at a normal dose.
I initially was prescribed Xanax for “work-related stress” when I was fresh out of PA school. Physical dependence, tolerance, and interdose withdrawal from the benzodiazepines developed quickly (within a month or two), although I did not recognize them as such, nor did my then-prescribing psychiatrist. Eventually, after discovering an online story written by another person who had been iatrogenically injured by benzodiazepines, and later coming across The Ashton Manual, I put the pieces together that the benzodiazepines were the cause of what I was experiencing as physical, mental, and psychiatric deterioration.
Shortly thereafter, I began the harrowing journey of becoming benzodiazepine-free. Naively and without knowledge of the need for slow tapering, I entered a seemingly respected rehab facility and underwent a cold-turkey discontinuation, a method that was presented to me as “safe.” Since October 2010, despite being completely free of benzodiazepines, I have experienced distressing, painful, disabling, life-limiting, and severe withdrawal symptoms that have persisted in a protracted fashion—a syndrome that, as indicated in the literature, is likely a direct result of the medically negligent way in which I was taken off the drug.
I am composing this to you from my bed, where I have spent most of the last seven years with a nervous system that has been incensed with scores of symptoms—including chronic, crippling nerve pain; feelings of depersonalization and derealization; fatigue; an “on a boat” sensation similar to Mal de Debarquement Syndrome; and countless others—some of them so severe I have felt suicidal for significant portions of that time. Just a few years ago, I wouldn’t have been able to attempt to write this, as my cognitive and mental abilities were so profoundly affected by benzodiazepines I could not even complete puzzles intended for toddlers.
While I have no formal psychiatric training, I do have much firsthand, lived experience with benzodiazepines. I have spent seven years participating in online benzodiazepine support communities, observing countless anecdotes from others who have had similar experiences, corresponding with benzodiazepine experts, and furiously researching both the benzodiazepine and Z-drug classes of drugs.
Currently, when my symptoms allow, I volunteer for the nonprofit organization Benzodiazepine Information Coalition, as well as for other benzodiazepine activism efforts. The following is my opinion, supported by literature and experts where available, in the form of a detailed response to the column entitled “MIND MATTERS: Psychiatry A-Z—Benzos,” authored by Dr. Greg Smith (Chief of Psychiatric Services at Aiken Barnwell Mental Health Center) and published by Aiken Standard on October 22, 2017. Text in bold italics is quoted from Dr. Smith’s column.
OK, we might as well jump right in and get this one out of the way. Benzodiazepines are not bad drugs.
This sentence is incomplete. It should read, “Benzodiazepines are not bad drugs when taken short-term, as prescribed, per recommended guidelines” (British National Formulary, Pennsylvania, New York, Committee on Safety of Medicines, The Ashton Manual). “Short-term” in this case means no longer than two to four weeks, including a tapering off period. In short-term use, benzodiazepines can be valuable, sometimes even life-saving, across a wide range of clinical conditions.
Nearly all the disadvantages of benzodiazepines result from long-term use—regular use for more than a few weeks. Indeed, even four weeks’ use of benzodiazepines may put some individuals at risk of iatrogenic physical dependence and a withdrawal syndrome, as detailed in the FDA’s prescribing information for Ativan: “withdrawal symptoms (e.g., rebound insomnia) can appear following cessation of the recommended dose after as little as one week of therapy.” Because of this, the least “bad” use of benzodiazepines would be sporadically, no more than a few times a year, at the lowest effective dose, in cases such as flight or dental anxiety, as premedicants for surgery, or in emergency situations.
Even when used in the short-term, however, benzodiazepines are not without risk and have been documented to sometimes cause (among other problems) memory impairment, paradoxical stimulant effects, oversedation, depression, emotional blunting, an increased likelihood of falls and accidents, drug interactions, and adverse effects in the elderly. One meta-analysis, published in May 2017 in the journal Clinical Pharmacist, found that hip fracture risk is highest among new users of both benzodiazepines and Z-drugs.
In addition, as detailed by Professor Sam Timimi, a consulting child and adolescent psychiatrist and director of postgraduate education for the National Health Service in Lincolnshire, England, and a visiting professor of child and adolescent psychiatry at the University of Lincoln, in this video:
Even though they can be useful in the short-term, one of the big problems is . . . that even a short-term prescription can open the window towards a long-term one, particularly if the prescriber is not aware of the potential for withdrawal symptoms, even after short-term prescriptions. What that can lead to is the prescriber confusing withdrawal symptoms with a return or even worsening of the original problem. And, from there, the window is opened toward a more long-term prescription rather than helping the person work through whatever withdrawal symptoms are occurring.
Bad is a subjective term, and is worth defining. One definition of bad is: “not such as to be hoped for or desired; unpleasant or unwelcome.” Another is: “causing or liable to cause sickness or ill health; injurious or harmful.” If you were to ask anyone who was unlucky enough to take benzodiazepines long-term, on a doctor’s recommendation, without informed consent about the risks of doing so, who then became physically dependent on the drugs and experienced a withdrawal syndrome after trying to stop taking them, that person would likely tell you how blindsided they were by how very bad, unpleasant, and unwelcome an outcome resulted. In fact, many people who find themselves unwittingly caught in a cobweb of iatrogenic harm from taking benzodiazepines describe their experience with words such as “hell,” “torture,” “suffering,” and “neverending,” to name a few.
Especially confusing and alarming to current patients and would-be consumers of benzodiazepines and Z-drugs is the fact that there seems to be no real consensus among the medical community about this class of drugs. In his article, Dr. Greg Smith claims that “benzodiazepines are not bad.” On the other hand, Dr. Allen Frances, chairperson of the DSM-IV Task Force, professor emeritus and former chair of the Department of Psychiatry at Duke University (and, ironically, author of the article “Yes, Benzos Are Bad for You”), states in this YouTube video:
Benzodiazepines are pretty useless medications in everyone. . . . There are some people that can remain on a low dose, but many people become ‘hooked’ [physically dependent] on them. Once ‘hooked,’ very hard to get off of benzodiazepines. The symptoms of anxiety during withdrawal may be much worse than whatever symptoms originally had the person start the benzodiazepine. And so these are medications that are terribly difficult to control.
Dr. Frances is not alone in his opinion. There are a plethora of doctors, medical providers, journalists, researchers, clinical psychologists, and other professionals who consider benzodiazepines to be “bad,” or to cause more harm than good for anything other than intermittent or very short-term usage. Among them is the Maine Benzo Study Group, comprising physicians and other healthcare professionals who conclude that there is no evidence for long-term use. Some critics, including my own current treating forensic psychiatrist who monitors my protracted withdrawal, even go so far as to say that the drugs should be banned or taken off the market altogether save for emergency or surgical uses.
Well, benzodiazepines can be extremely useful in the treatment of muscle spasms and stiffness that come from various neurological diseases.
Sure they can. But, again, when used short-term or sporadically. According to benzodiazepine expert Dr. Heather Ashton, Emeritus Professor of Clinical Psychopharmacology at the University of Newcastle upon Tyne, England:
Drug withdrawal syndromes, in general, tend to consist of mirror images of the drugs’ initial effects. Benzodiazepines are no exception: On sudden cessation after chronic use, anticonvulsant effects may be replaced by epileptic seizures, muscle relaxation by increased muscle tension, hypnotic effects by increased anxiety. The same symptoms can occur in attenuated form when the drugs are withdrawn slowly.
When used long-term, benzodiazepines can cause tolerance, physical dependence, and withdrawal syndromes that result in rebound symptoms and worsening muscle spasms and stiffness, compounding the very problem they were prescribed for. Benzodiazepine use may also result in many other distressing symptoms that the patient never had prior to taking the drug.
They may be used in the management of seizure disorders.
Tolerance to the anticonvulsant effects of benzodiazepines makes them generally unsuitable for long-term control of epilepsy.
They may be helpful when trying to sedate someone for a diagnostic test or a surgical procedure.
This would be a one-time use, and as such would not put the patient at risk for physical dependence, tolerance, or a withdrawal syndrome. Some patients, however, may be at risk for a more rare paradoxical stimulant reaction.
They may be helpful short-term sleep aids when you just can’t get your rest at night.
“Short-term” is the key phrase here. The problem is that many medical providers are prescribing benzodiazepines, (and similar medications such as the Z-drugs long-term, without informing their patients of the risks of doing so. Tolerance to the hypnotic effects of benzodiazepines develops rapidly, and sleep recordings have shown that sleep patterns, including deep sleep (slow wave sleep) and dreaming, which are initially suppressed by benzodiazepines, return to pretreatment levels after a few weeks of regular benzodiazepine use. Similarly, daytime users who take the drugs for anxiety no longer feel sleepy after a few days. Patients who become physically dependent and/or tolerant to the benzodiazepines often report rebound insomnia that is worse than the insomnia the drugs were initially prescribed for, while those who are prescribed benzodiazepines for another condition may experience new-onset insomnia.
They are still used in some settings to treat acute withdrawal from alcohol.
Yes, benzodiazepines can be useful in the treatment of severe alcohol withdrawal, but again, they are intended to be used in the short-term for symptom management of the acute alcohol detoxification, then stopped before the patient develops therapeutic dose dependence or tolerance. The FDA prescribing information for Klonopin, for example, clearly states:
Addiction-prone individuals (such as drug addicts or alcoholics) should be under careful surveillance when receiving [benzodiazepines] or other psychotropic agents because of the predisposition of such patients to habituation and dependence.
Should a person who has undergone alcohol withdrawal become physically dependent on benzodiazepines, then try to discontinue them, some of the resulting withdrawal symptoms might mimic those seen in alcohol withdrawal—with the key difference being that benzodiazepine withdrawal can be more severe and persist for much longer. Dr. Heather Ashton, a benzodiazepine expert who ran a clinic specifically for benzodiazepine withdrawal, is quoted as saying:
Withdrawal symptoms [from benzodiazepines] can last months or years in 15 percent of long-term users. In some people, chronic use has resulted in long-term, possibly permanent disability.
Similarly, research scientist and benzodiazepine expert Malcolm H. Lader, Emeritus Professor of Clinical Psychopharmacology, Institute of Psychiatry, King’s College,
With benzodiazepines, a proportion of patients go on to long-term withdrawal, and they have very unpleasant symptoms for month after month. I get letters from people saying you can go on for two years or more. Some of the tranquilliser groups [in the UK] can document people who still have symptoms ten years after stopping.
In addition, both alcohol and benzodiazepines put patients at risk for a phenomenon known as “kindling.” Kindling refers to the neurological condition that occurs with repeated withdrawals from sedative-hypnotic drugs such as alcohol and/or benzodiazepines. With each incidence of withdrawal from these substances, individuals may have an increasing likelihood of experiencing more-severe withdrawal effects—up to and including seizures, psychosis and/or death. Kindling may also be a concern if a patient prescribed benzodiazepines for alcohol withdrawal takes the drugs long enough to develop physical dependence, then attempts to stop taking them. The subsequent withdrawal symptoms may be more-severe than they would be otherwise, due to the prior history of alcohol withdrawal.
Finally, they are also pretty darned good medications for anxiety.
Benzodiazepines may be effective for anxiety in the short-term, or when used intermittently. The Ashton Manual states:
Tolerance to the anxiolytic effects develops more slowly than to some of the other therapeutic actions of benzodiazepines, but there is little evidence that benzodiazepines retain their effectiveness after a few months. In fact long-term benzodiazepine use may even aggravate anxiety disorders. Many patients find that anxiety symptoms gradually increase over the years despite continuous benzodiazepine use, and panic attacks and agoraphobia may appear for the first time after years of chronic use. Such worsening of symptoms during long-term benzodiazepine use is probably due to the development of tolerance to the anxiolytic effects, so that ‘withdrawal’ symptoms emerge even in the continued presence of the drugs. However, tolerance may not be complete and chronic users sometimes report continued efficacy, which may be partly due to suppression of withdrawal effects. Nevertheless, in most cases such symptoms gradually disappear after successful tapering and withdrawal of benzodiazepines.
In addition, in a Xanax study conducted for the FDA, manufacturer Upjohn noted that patients became physically dependent after eight weeks of use and that, at that point, panic symptoms increased 350 percent upon withdrawal. At the end of the 14-week study, the drug-exposed patients were much worse off than the placebo group. They were more anxious, more panic stricken, and doing worse on a “global scale” that assesses overall well-being. Forty-four percent had been unable to get off the drug.
Many patients who take benzodiazepines as prescribed report increased and sometimes severe rebound anxiety, panic, and terror upon attempts at cessation. If the drugs were initially prescribed for anxiety, the rebound anxiety is often experienced as much worse, and if the drugs were prescribed for something else, new-onset anxiety may occur. Incidentally, this increased or newly emerging anxiety is often misdiagnosed by psychiatrists and other medical providers as “mental illness” or as a “recurrence of the underlying disorder” for which benzodiazepines were initially prescribed, setting patients up for prescribed benzodiazepine dose escalations and/or polydrugging with additional psychiatric drugs. Some patients are even placed on an additional benzodiazepine or on a Z-drug (a class that is pharmacologically similar to the benzodiazepines) in an attempt to control anxiety, insomnia, or other symptoms that were brought on by tolerance to the initial benzodiazepine itself.
These medications are so good at what they do that sometimes people go a little overboard with them. They might take an extra one some nights to help them sleep when one just didn’t do the trick. They might take them every four hours instead of every six as prescribed because their anxiety is just a little more severe this month and ‘I know the doctor wouldn’t mind.’ They might share them with other members of their family or their friends, and then discover that there is too much month left for the number of pills left in their bottle.
Vast numbers of benzodiazepine patients exhibit none of these behaviors and take the drugs exactly as prescribed. As a result, they may endure months and sometimes years of tolerance withdrawal and/or interdose withdrawal without ever increasing their dose. In fact, one reason that tolerance and interdose withdrawal occurs so often is because patients continue taking the same prescribed dose at their prescriber’s recommendation, without ever increasing the dose.
In cases where a patient does initiate dose escalation, it may be due to a phenomenon known as “pseudoaddiction.” Pseudoaddiction, as it related to opiate dependence, has been described by the American Society of Addiction Medicine:
Pseudoaddiction is a term which has been used to describe patient behaviors that may occur when pain is undertreated. Patients with unrelieved pain may become focused on obtaining medications, may ‘clock watch,’ and may otherwise seem inappropriately ‘drug seeking.’ Even such behaviors as illicit drug use and deception can occur in the patient’s efforts to obtain relief. Pseudoaddiction can be distinguished from true addiction in that the behaviors resolve when pain is effectively treated.
In a similar fashion, patient-initiated dose escalations of benzodiazepines can happen in response to their suffering from interdose and tolerance withdrawal—conditions that the patients have usually never heard of. They simply know that they are experiencing increasing and intolerable anxiety, panic, and/or physical pain or discomfort. Just as described above in relation to opiates, interdose withdrawal—withdrawal symptoms that emerge between scheduled doses after a patient has developed tolerance—may manifest as “clock watching” due to a physical or physiological “craving” for the next dose before it is due.
In cases of pseudoaddiction, otherwise compliant patients are not looking to get high, they are in search of relief to allow them to continue living their lives without the debilitating or intolerable symptoms of tolerance withdrawal. Any medical provider with patients on benzodiazepines long-term (more than two-to-four weeks) who encounters patients taking slightly more of a drug than prescribed or running out of their prescriptions early should consider the very real possibility of pseudoaddiction, tolerance, and interdose withdrawal.
Taking too many of these types of medications over time leads to tolerance, a physical state in which your body has become physically dependent on a certain amount of this drug circulating in your system most all of the time. If that level drops, you most likely will experience withdrawal symptoms that may be mild to severe and even life threatening.
A patient doesn’t have to “take too many of these types of medications” in order to develop tolerance. Tolerance to all therapeutic effects of benzodiazepines commonly occurs with prescribed therapeutic doses taken exactly as directed for more than a few weeks. While benzodiazepines were initially developed and marketed to be “safer” replacements for the stronger and more-deadly-in-overdose barbiturates, that designation has turned out to be too good to be true, and history has repeated itself. Benzodiazepines, albeit safer in overdose than barbiturates (when not combined with other drugs like opiates), have withdrawal syndromes that are equally as devastating, if not worse.
If benzodiazepines, after a few weeks of use, have the potential to cause, as Dr. Smith states, “severe and even life threatening” withdrawal effects (among them, seizures, psychosis, and death) with a drop in dose, how could they not be “bad”? What other drugs that are so freely prescribed carry such risk? (Consider that in 2008, approximately 5.2 percent of US adults aged eighteen to eighty years used benzodiazepines. In all age groups, roughly one-quarter of individuals receiving benzodiazepines were prescribed the drugs long-term.)
It could be argued that benzodiazepines are indeed “bad” for people who end up experiencing a withdrawal syndrome they were never warned about. And they are even worse for patients unlucky enough to develop protracted withdrawal, which sometimes persists for many years, and in rare cases up to a decade, oftentimes rendering them unable to work, socialize, or have any semblance of the life they had prior to benzodiazepine prescription. While protracted withdrawal syndrome appears to be more likely among patients who undergo a cold-turkey or rapid taper off a benzodiazepine, even some people who slowly and painstakingly microtaper off their drug (reducing their dose, typically in liquid form or by using a gram scale, in tiny microgram amounts rather than in larger, milligram-sized reductions) have reported developing severe and disabling withdrawal symptoms.
Medical providers are always supposed to consider risk versus benefit. When treating insomnia, muscle spasms, or anxiety, isn’t it worse to prescribe a medication that has a three-fold higher risk for suicide (even after adjusting for insomnia, substance use, anxiety, and mood disorder) and has the potential to cause a severe, sometimes protracted, sometimes deadly withdrawal syndrome than it is to try safer alternatives from the outset? Perhaps there are patients who are suffering so badly with certain conditions that their prescriber feels that that the benefit of long-term use outweighs the risk. But those cases should be in the minority. Instead, what we see, despite thousands of papers in medical journals attesting to their dangers, are benzodiazepines widely overprescribed for more-minor ailments, and even for conditions for which they are contraindicated, such as PTSD.
This does not mean you are a bad person. It just means that you’re physically dependent on the medication.
True statement. When someone’s body responds, physiologically, exactly as the literature predicts it will, that doesn’t make that individual a bad person. Patients who take prescribed SSRIs, SNRIs, other antidepressants, corticosteroids, GABA analogues, or beta-blockers are not bad people, either, despite the fact that those prescribed medications also cause normal-dose physical dependence.
The problem is that benzodiazepines are controlled substances, and patients taking them, even exactly as prescribed, are often met with suspicion. Many compliant patients are falsely accused of being “drug addicts” and are treated like a “bad person” simply because they develop withdrawal symptoms after reaching tolerance, experiencing interdose withdrawal, or attempting to reduce their dose (often too rapidly, at the insistence of their prescriber). These patients are sometimes “cut off” (refused refills), only to find themselves in a compromised state of severe withdrawal, leading them to check into emergency rooms or psychiatric wards. Others desperately interview multiple doctors in search of one who is “benzo-wise” or at least “benzo-cooperative.” All of this, simply to obtain the repeat prescriptions that are essential to properly discontinue their drug via a slow, patient-controlled taper as is recommended by experts in the field.
Some patients who have chronic physical or emotional illnesses may take very stable doses of benzodiazepines under a doctor’s care for months or even years and do fine.
While sometimes true, the above is short-sighted. If this is the sole message doctors are relaying to their patients before prescribing a benzodiazepine, they are failing to provide them with the complete picture and the fully informed consent they deserve. A patient’s body doesn’t physiologically know or care if it’s “under a doctor’s care,” so this is irrelevant as to whether that body will develop physical dependence. Likewise, monthly, or even more frequent, fifteen-minute follow-up visits with oversight will not prevent the development of physical dependence if a patient takes the drug past the recommended four-week time period.
While some lucky patients may take benzodiazepines long-term without experiencing physical dependence, tolerance, or withdrawal symptoms, many cannot. According to the benzodiazepine dependency advocacy group Reconnexion, between 50 percent and 80 percent of people who use benzodiazepines for six months or longer will experience at least some withdrawal symptoms after stopping them. And those symptoms may continue long after the drug is out of a person’s system, as Dr. Heather Ashton points out: “Withdrawal symptoms can last months or years in 15 percent of long-term users. In some people, chronic use has resulted in long-term, possibly permanent disability.”
To date, there is no available test or amount of “doctor’s care” that can predict who will fall into the category of “do fine” and who will not. Because of this lack of foresight, all patients should be given fully informed consent prior to the initiation of benzodiazepines or Z-drugs, information that should accurately represent how difficult, time-consuming, and severe the withdrawal syndrome can sometimes be.
It is important to remember that when your body is in this physically dependent state, it is always unwise to just stop taking the medication cold turkey. This must be done by tapering the drug over time, and once again should be done under medical supervision for safety.
“Over time” in this context can translate to many years in order for discontinuation to be tolerable and for the patient to remain functional. Patients should be told this before they are first prescribed a benzodiazepine, and medical providers need to become aware ofthis reality as well—that in order for a taper to be successful, the rate and speed must be determined by the iatrogenically dependent patient, not the doctor.
Oftentimes the medical community’s expectations of tapering and withdrawal do not line up with what is actually required, or what is experienced by their patients. As for patients, when they encounter a withdrawal syndrome they didn’t expect, from a drug prescribed by their doctor, often without informed consent about its risks, it only adds insult to injury when their prescriber tells them that their taper or their withdrawal symptoms are “taking too long.”
From the patient’s perspective, the overwhelming trend seems to be that doctors and other medical providers are good at prescribing benzodiazepines but (save for a small percentage) uninformed on how to get people off of them. In reference to this, this, Dr. Allen Frances, Chairperson of DSM-IV Task Force, professor emeritus and former chair of Department of Psychiatry at Duke University, states (and I quote): “It is important to understand that any idiot can prescribe a medication. De-prescribing a medication,getting a patient off medication, is a high art.”
Because patients who are iatrogenically dependent on benzodiazepines often encounter backlash from the medical community, they’re forced to become “citizen scientists” or “subject matter experts” on benzodiazepine withdrawal as a matter ofsurvival. Online support groups (BenzoBuddies, Facebook groups,Surviving Antidepressants and so on) are filled with tens of thousands of everyday people helping one another with taper plans and patient-developed methods that, through trial and error, have proven over time to be extremely successful, albeit often painful.
If there are medical providers out there who would like to, with an open mind, educate themselves about what benzodiazepine withdrawal syndrome means for many of their patients, or who want to learn about effective patient-controlled tapering methods, they would be welcomed with open arms into these corners of the internet where people go to survive benzodiazepine withdrawal syndrome for lack of anywhere else to turn.
Medical professionals are also invited to contact one of the few benzodiazepine withdrawal charities in the UK and Australia for guidance, as some of these groups have existed for many years, and their members can offer a wealth of information based on their experience supporting and assisting prescribed-benzodiazepine- dependent patients one-on-one.
Addiction is different from physical dependence. When one is taking a stable dose of Xanax one mg three times a day for a severe panic disorder and doing fine, there is no problem. When one takes more pills than the doctor prescribes, shops around for more than one doctor to provide more pills to take, forges prescriptions to get more drug, or buys pills off the street to supplement the prescriptions that the doctor has already written, that is almost always evidence of addiction and is a problem.
First, a thank you to Dr. Smith for being knowledgeable about the fundamental differences between prescribed physical dependence and addiction, as many medical providers are not when it comes to benzodiazepines, a reality that sometimes causes grave harm or added insult. While benzodiazepines abuse exists, most cases of physical dependence are iatrogenic—resulting from as-prescribed and compliant use. As stated above, when dose-escalation by the patient does occur, it may be a sign of pseudoaddiction, spurred by a need to obtain relief from symptoms of prescribed dose dependence, tolerance, and/or interdose withdrawal.
So, the bottom line is, used correctly benzodiazepines are very helpful to a lot of people for a lot of different physical and mental conditions. The problem is that many doctors, primary care, internal medicine, psychiatry and surgical specialists among them, are spooked by all the potential problems with benzos and may not want to prescribe them at all, even when they are most likely the drugs of choice and would do very well for the patient.
In light of all evidence presented here, there seems to be good reason to be “spooked.” If Dr. Smith or other medical professionals still aren’t convinced, I invite them to spend some time in the benzodiazepine withdrawal support groups mentioned above (e.g., Benzo Buddies or Facebook groups), to watch some of the thousands of benzodiazepine withdrawal testimonials on YouTube, to read testimonials by cancer patients and physicians who were made ill by prescribed benzodiazepines, to call or write some of the aforementioned withdrawal support charities in the UK, or to watch the Council for Evidence-Based Psychiatry’s “Withdrawal Advisers” videos featuring professionals who would adamantly disagree with them.
Further examples that may contribute to a legitimate “spook factor” include the many cases of successful litigation for long-term misprescribing and/or negligent withdrawal management, or incidents of persons being left to die in jail from cold-turkey withdrawal when their benzodiazepine prescriptions were denied to them in prison.
First of all, if a prescriber has known you for many years has made a diagnosis of something like panic disorder and has been successfully treating you with a benzodiazepine for many years, they are likely to continue to do so.
This isn’t always true. Due to recent opiate regulations that have heightened the monitoring of the prescribing practices of physicians (as well as benzodiazepine regulations cropping up in a few states such as Hawaii and one pending in Massachusetts), many doctors have decided to simply stop prescribing benzodiazepines, sometimes with very little notice to their long-term benzodiazepine patients. What is arguably a good thing for curtailing benzodiazepine overprescription in the future becomes life-threatening for a patient who is already physically dependent on benzodiazepines due to long-term prescription.
All too often, people show up in benzodiazepine withdrawal support groups desperately seeking recommendations for physicians in their area from other patients, because their doctor “cut them off” without explanation or cause other than to say they’re “no longer prescribing.” When patients are iatrogenically dependent on benzodiazepines, they are at the mercy of their prescribers and their lives may quite literally depend on them.
If you begin to overuse your meds, even innocently, because your symptoms have changed, please go talk to your doctor about that and they will work on that problem with you. A simple dosage adjustment or change in agent may do the trick. If you do not tell them and they see prescription requests coming earlier and earlier, they will begin to be suspicious and will be much more likely not to prescribe for you. We doctors are now mandated by the state of South Carolina to check on prescription refills for controlled substances through the SCRIPTS database, a medication monitoring system that was made legal and mandatory on May 19, 2017. Do not play doctor and decide when it’s time to double your dose or change the time of day your dose comes or things like that. Do not assume that your doctor will be OK with whatever you decide to do. You and your doctor are a team and must work together to get your treatment right. It is, after all, your doctor’s license and DEA registration on the line when they prescribe controlled drugs. Do not share your medication with your spouse, your sibling, your mother or your friends across town. Your doctor prescribed these controlled medications for you – nobody else. If they find that they are being made the default source of drugs for anyone else, that is one of the quickest ways to make sure that their pen goes back in their pocket and never comes out for you again.
This paragraph presents very much like victim-blaming and stigmatizing, a practice that has become a common theme among defenders of long-term benzodiazepine use. According to this tactic, if patients who are physically dependent on prescribed benzodiazepines—even if that dependency happened through no fault of their own—are simply labeled as drug misusers, then the problem will inevitably be said to lie with the patient, not with the prescription (or prescriber) of the drug. This frequently misused argument features one central tenet: blame the patient. In reality, the assertion that benzodiazepines are safe if used as prescribed, and that problems only happen when patients disobey their doctor and escalate their dose, is inherently flawed. Downregulation of GABA receptors and all the serious problems that entails can and does occur when benzodiazepines are taken exactly as prescribed, no matter the dose.
If medical providers have patients who exhibit dose-escalation behaviors, instead of threatening to dangerously cut them off or to “put your pen back in your pocket,” it would make better sense to consider the possibility of pseudoaddiction, as described above. In such cases, some recommended solutions, at the prescriber’s discretion, might include:
A slight updose to a dose where the patient is stabilized out of tolerance withdrawal and comfortable, at least for the time being. (As the The Ashton Manual notes: “The advantages of discontinuing benzodiazepines do not necessarily mean that every long-term user should withdraw. Nobody should be forced or persuaded to withdraw against his or her will. In fact, people who are unwillingly pushed into withdrawal often do badly.”)
If the patient is experiencing interdose withdrawal, consider a stepwise crossover to a longer-acting benzodiazepine such as Valium to prepare the patient for starting a slow taper off the drug, with the patient in control of the rate and speed of reduction. (It’s important to note that taper guidelines are just that—guidelines. Individuals should be allowed to adjust their taper speed and rate according to their own body’s signals and tolerability. Even if a taper seems “slow” to a provider, it might be all the patient can comfortably endure. At the end of the day, if the dose is dropping, regardless of how slowly, progress is being made toward discontinuation.)
Dosing patients more frequently if they cannot or do not wish to cross to a longer-acting benzodiazepine. (From the British National Formulary: “The above BNF guidance seems to suggest that all long-term prescribed benzodiazepine users should switch to diazepam in order to withdraw. However, many such users can successfully withdraw directly from their current benzodiazepine, providing it is available in small enough doses to allow for gradual reduction.”) For example, patients taking a drug with a short half-life on a daily basis, such as Xanax or Ativan, may benefit from being dosed four to six times a day, in equal and even doses, to stave off interdose withdrawal. This dosing schedule might relieve symptoms, at least until patients reach tolerance to their dose, if they do.
If you go to your doctor with an open mind looking for some solutions to your problems that you will both be satisfied with, they will work right along side you to accomplish that. If, on the other hand, you are demanding, hostile, threatening and manipulative, they will show you the door. When it comes to controlled substances like benzodiazepines and narcotics, physicians are under the watchful eyes of the Federal DEA, the state, and other watchdog groups, and they know it. They will still prescribe these drugs, but under strict circumstances and careful supervision and more than likely for a limited time.
If the question of “who lacks an open mind” were asked of patients who unwittingly became dependent on benzodiazepines taken only as prescribed, the overwhelming response would likely be: “the medical community.” There is much to be learned from these patients in the trenches, with their lived experience of taking and coming off this class of drug. Many would likely add that it’s rare for patients to walk into a medical doctor’s office and explain that they are experiencing physical dependence or a withdrawal syndrome and be met with someone who “works right alongside you.”
Perhaps that is how Dr. Smith functions in his practice. But the reality is that many patients are met with blank stares, outright dismissal, gaslighting (“it’s all in your head”), patient-blaming, ineffective and dangerous solutions such as rehab or flumazenil, or an outright refusal for help. When that happens repeatedly, and patients are suffering horribly, they tend to get frustrated, “demanding, hostile, threatening, and manipulative” for the mere reason that their survival is being threatened (not to mention the fact that benzodiazepines themselves are documented to cause rage, aggression, violence, and personality changes). What such patients need is knowledgeable providers, validation, timely help, and compassion.
Ultimately, what most patients in this position desire is not anger or confrontation. They want change and education, to prevent what happened to them from happening to others.
Once again, benzodiazepines prescribed and used correctly are wonderful drugs for many varied physical and emotional conditions. Used judiciously they can be very helpful in the overall management of these disorders. They can also be abused and lead to substantial addiction problems. Work with your doctor to find the right balance of medications and other therapies that will help you manage your symptoms.
There is a reason that benzodiazepines have been described as a “decades-long medical scandal” likened to the debacle of thalidomide. And there is a reason that they are responsible for the largest-ever class-action lawsuit against drug manufacturers in the UK, involving 14,000 patients and 1,800 law firms. It is because the drugs are rarely “used judiciously.” Even when benzodiazepines are taken exactly as directed, the outcome can be far from “wonderful.”
The objective here isn’t to bash Dr. Smith, medical professionals, or even benzodiazepines. Finger-pointing from either side is futile—it doesn’t help those already injured and it doesn’t protect others from further injury, which should be the only goals. Instead, I wrote this piece to share my opinion that Dr. Smith’s article highlights just how inconsistent and misinformed prescribers can be regarding benzodiazepines, and how many disparate beliefs exist around benzodiazepine prescription despite a wealth of guidelines and evidence. Ultimately and unfortunately, it is the patients who suffer as a result.
Had I not experienced benzodiazepine withdrawal firsthand, I’m not sure I would have known about it either. It’s not taught in school, evidenced by the fact even medical doctors and other medical professionals are becoming iatrogenically injured patients. This lack of awareness, as well as what can be outright denial in the face of overwhelming evidence, simply has to change. Informed consent, evidence-based consensus, risk-versus-benefit analysis, adherence to existing guidelines and expert recommendations, and provider education and cooperation (both in prescribing and in tapering) is imperative if the six-decades-long iatrogenic benzodiazepine problem is to be solved, while minimizing harm to current and would-be benzodiazepine patients. It is my hope that there will be more, much-needed dialogue around this topic—dialogue that must include and respect the voices of the iatrogenically injured benzodiazepine patients who have been directly affected.
Nicole is a Physician Assistant residing in Virginia. She obtained a BS at James Madison University in 2000 and then went on to complete the Master of Physician Assistant program at Eastern Virginia Medical School in 2004. She practiced in an Urgent Care and Occupational Medicine setting until severe illness from benzodiazepine withdrawal syndrome left her unable to work.
In 2005, she was prescribed Xanax for “work-related stress”. Over the course of five years, she developed many classic symptoms of benzodiazepine tolerance withdrawal, which multiple psychiatrists misdiagnosed as mental illness. This resulted in prescribed polypharmacy to “treat” the troubling symptoms of tolerance, including two benzodiazepines prescribed simultaneously, a Z-drug, an antidepressant, and an antipsychotic. In late 2010, after discovering a magazine article authored by a journalist experiencing similar symptoms from his prescribed benzodiazepine, Nicole was prompted to research further and made the connection between her own troubling symptoms and the medication. This was followed by her immediate decision to withdraw. Unfortunately, lacking the proper guidance or information at the time regarding the absolute need for a slow taper, she was negligently cold-turkeyed in a detox center. This ultimately resulted in a severe and protracted withdrawal syndrome that persists to date. When symptoms allow, Nicole writes about benzodiazepines and their potential for severe and/or protracted withdrawal syndrome and volunteers her time helping with ongoing benzodiazepine awareness initiatives, including Benzodiazepine Information Coalition. She hopes to continue to use her lived experience to advocate for more education and awareness around benzodiazepine risks and harms as well as for changes in prescribing and withdrawal practices. Other interests include the primal lifestyle, cooking, and spending time with her supportive family.