This is part five, and the final part of our series responding to a particularly inaccurate article published in the Aiken Standard by Dr. Greg Smith of Aiken, South Carolina. Subsequent parts to follow until the entire article is addressed in full. The original article can be read here. Dr. Smith’s statements from the article are bolded and italicized for reader convenience.
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.