In hindsight, I should have never accepted a Xanax prescription from my doctor. What followed was catastrophic — rapidly developing tolerance and physical dependence on the drug and a prolonged illness. Three-and-a-half years later, I am still slowly tapering off Valium (having transitioned to a longer-acting benzodiazepine to aid in tapering) and experiencing debilitating symptoms daily.
I was unprepared for what happened to me by my medical training, my physician, and the drug sheet I was given at the pharmacy. Later I would find that some of the most serious risks are not mentioned in the FDA Label — specifically that patients can suffer disabling neurological damage from benzodiazepines, which in some cases may be permanent. Had I known about this possibility, I would have never filled the prescription. But because I was never truly informed of the risks, my health and life as I knew it have been destroyed.
My experience is far from unique. The unfortunate truth is that patients prescribed benzodiazepines are not receiving true informed consent. While many were cautioned about the risk of addiction, the overwhelming majority of patients in online support groups for benzodiazepine withdrawal report having never been warned about the possibility of physical dependence, severe withdrawal, and neurological injury. In fact, in a 2013 survey of the largest online forum, Benzobuddies, almost 60 percent of the respondents reported receiving no warning at all from their provider about the potential side effects and risks of benzodiazepines.
I’ve been asked many times how this could have happened to me. After all, I’m a doctor — I should have known. The truth is, physicians are not adequately trained about the possible adverse effects of benzodiazepines. As a medical student and internal medicine resident, I was taught about benzodiazepines’ potential for addiction and abuse, their increased risk of overdose in combination with alcohol and opioids, to prescribe them only “short term” (which I now know is <2- 4 weeks), and to use caution in the elderly. But what happened to me, and so many others, was never mentioned as a possibility. As I found out the hard way, the medical profession is grossly uneducated about the potential harms of this drug class.
Unfortunately, in the past few years, I’ve been forced to learn what could fill volumes about benzodiazepines through my research, participation in online support forums, and my advocacy work. While not a comprehensive list of the risks, here are the things I wish I had known before ever accepting a prescription for a benzodiazepine:
- Physical dependence on benzodiazepines can develop in a matter of days or weeks. This can, and often does, occur in the absence of abuse or addiction. Physical dependence and addiction are two distinct entities. Being warned only about the addictive nature of benzodiazepines gave me a false sense of security, since I took my medication only as prescribed.
- Withdrawal symptoms can be intolerable and disabling in spite of a very slow taper over the course of years. The worst cases may become bedridden (or suffer severe symptoms such as akathisia), unable to do basic self-care tasks most people take for granted such as showering or cooking. Not everyone will experience symptoms to this extreme, but currently there is no research to predict which patients will have problems.
- Even commonly prescribed or “low doses” of benzodiazepines can be problematic. I took the lowest dose of Xanax possible (even lower than my prescribed dose), but I developed major problems nonetheless. The bottom line is, there is no such thing as a “safe” dose of any benzodiazepine.
- Benzodiazepine adverse effects, tolerance, and withdrawal can create a myriad of symptoms which are often confused with many chronic health conditions. Many patients, myself included, visit numerous doctors in search of an answer to the their problems, only to later discover the cause is their prescribed benzodiazepine.
- Perhaps the most disturbing thing is that these drugs can cause long-term brain damage, resulting in a protracted withdrawal syndrome that can persist years and may even be permanent. How many people would sign up for a benzodiazepine prescription if they understood this risk?
Fully informed consent regarding benzodiazepines is not happening in current practice, and that needs to change. The first step in solving the problem is ensuring that prescribers are fully aware of the risks. To start, all prescribers of benzodiazepines should educate themselves by reading the Ashton Manual, which contains information about benzodiazepine withdrawal and safe taper protocols. They should also read the prescribing guidelines for benzodiazepines (such as Pennsylvania and New York City), as well as websites containing educational material on benzodiazepines (such as Benzodiazepine Information Coalition, World Benzodiazepine Awareness Day, and the Alliance for Benzodiazepine Best Practices).
Once educated, prescribers have a responsibility to fully inform their patients of the risks of benzodiazepines–it’s simply not enough to expect a patient to read the drug sheet handed to them at the pharmacy. These drugs are so dangerous that written consent administered by the prescriber should be required before patients receive a prescription. This is currently not mandatory, but as more patients are recognizing they have been harmed by benzodiazepines, the push for this is growing. Informed consent bills initiated by benzodiazepine-injured patients are currently in progress in several states including Massachusetts, New Jersey and Connecticut.
Patients deserve to be given all the information needed to make the best decisions regarding their health: Anything less is unacceptable. Knowing that lack of adequate informed consent about these drugs is a gaping hole in current medical practice, I authored a consent form for benzodiazepine prescription, which contains everything I wish I’d been told before being given that Xanax prescription. Using this form has the potential to reduce patient suffering and save lives, so I am urging all prescribers to integrate this tool into their clinical practice.
Christy Huff is a cardiologist and co-director, Benzodiazepine Information Coalition. She can be reached on Twitter @christyhuffMD.
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