[Spoiler alert: This essay reveals details about the plot of the movie 127 Hours]
My name is Nicole and I am a physician assistant. I haven’t practiced since 2010 because of a protracted disability resulting from severe neurological insult. More specifically, I was iatrogenically injured by a long-term (well beyond the 2-4 week recommended guidelines) benzodiazepine prescription, initially given for minor “work stress”. Tolerance and interdose withdrawal insidiously ensued, as pharmacologically expected, ultimately leading to what I have since learned to be a common outcome: psychotropic polypharmacy — six pills in total, including two benzodiazepines and a Z-drug, as “treatment” for so-called “mental illness”. In actuality, my psychiatrist had misdiagnosed my presenting symptoms, both physical and psychiatric, by failing to consider a substance etiology (tolerance and interdose withdrawal coupled with the adverse effects from each new medication). An abbreviated version of my otherwise long, convoluted story can be found here. I now consider myself a member of the continuously growing prescribed-drug withdrawal and injury support community, as well as an advocate.
Recently, while contemplating benzodiazepine medication safety, as I often do, I re-read an infamous (among the benzodiazepine-injured community, anyhow) quote — an excerpt from the testimony given by a prominent Massachusetts psychiatrist:
“In a majority of patients who take low therapeutic doses, withdrawal is not as uncomfortable as going cold turkey from daily coffee. Try it and see for yourself. It is true that some patients experience more severe withdrawal, which is why we never wish the patient to abruptly discontinue the medication, but rather, slowly taper [emphasis added]”.
Reading that triggered a memory of the time, during the most acute period of my now 8-year post-benzodiazepine-discontinuation syndrome, when a family member introduced me to the movie 127 Hours. The catalyst for their sharing the plot was probably my voicing, for the umpteenth time, my righteous indignation over my iatrogenic plight and my buyer’s remorse over having not known the sordid history of benzodiazepines, including the details surrounding the revival of the market for them, as well as my uncertainty around my own ability to survive. The symptoms I was tasked with enduring felt too all-encompassing, persistent, and severe. I listened intently as said family member explained that the movie tells the true story of Aron Ralston, played by James Franco, a canyoneer whose arm became entrapped by a dislodged boulder while he was climbing solo in a remote Utah slot canyon. Ralston had packed very little food or water, wasn’t expected back at work for days, and hadn’t told anyone where he was going that day. He was, however, equipped with a small camera which he used to document what he thought was a last-testament diary for his family. Those recordings, which were re-enacted by Franco in the movie, were, not surprisingly, rife with regret and self-reproach: “God damn. It’s really sinking in how dumb this is. So many things about it — so many things”. The film’s title alludes to the passage of time from when Ralston awoke the day of his trip to the moment he was finally rescued after freeing himself via self-amputation, using only a CamelBak tube-turned-tourniquet, a carabiner, and a cheap, dull pocket knife. The details of the film were provided to me that day to impress upon me the wisdom that, instead of ruminating over regrets and “shoulda coulda wouldas” — futile musings which do not beget “do-overs” — ’tis better to accept the reality of one’s situation and resolve to help oneself. With his lesson successfully imparted, my relative then concluded by asserting: “I would’ve just cut my arm off”. He said it casually, as if, as easily as those seven words had rolled off his tongue, he would have just forgone all that unnecessary angst that Ralston committed time and energy to, and, instead, just gotten on with it.
And that’s when it clicked! In the same vein as my family member’s “armchair-expert” assertion, I could better make sense of the Massachusetts psychiatrist’s misguided conjecture about the long-term prescribing and withdrawal of benzodiazepines as this: He, and perhaps some of his like-minded colleagues, naively believe that a simple antidote to iatrogenic physical dependence is to “but rather, slowly taper”. It looks good on paper, but then so do a lot of things until you’re the one tasked with following through and experiencing it personally. Not to mention, the term ‘slowly’ is ambiguous, and, after exposure to the many thousands of anecdotes in the withdrawal support communities, I quickly realized that there is a glaring disparity between just how slowly many physically-dependent benzodiazepine patients report actually having to taper (think years for many, depending on starting dose and physiological sensitivity) for it to be sustainable versus what the majority of the medical community’s unrealistic expectations are (usually weeks or a few months at most). And, while the Massachusetts psychiatrist is correct in saying that some patients will withdraw with ease, a significant percentage of long-term benzodiazepine patients aren’t so lucky. In fact, many of them did try the proposed slow taper panacea to see for themselves; unfortunately, the reality of their own attempt at benzodiazepine discontinuation proved to be much more traumatic, long-enduring, and complicated than presumed. Case in point: cardiologist and fellow benzodiazepine-injured friend, Dr. Christy Huff, launched a campaign on Twitter to raise awareness. She detailed 79 symptoms experienced in her near-3-year (and counting) slow taper down from 15mg of Valium — symptoms like chemical terror, agoraphobia, tortured thoughts, memory and hair loss, akathisia, and suicidal ideation, to name a few. Sadly, her story is not unique; there are many thousands of harrowing reports telling of debilitating symptoms with each tiny “cut” (perhaps an apropos term, in that it can be painful, for a reduction in dose), as well as altered lives and relationships. The afflicted often become housebound, even bedbound, and are unable to drive, work, socialize, or complete routine activities that most people do with ease. All are commonly-mentioned symptoms; they come from the perspective of the “slowly tapering” or their loved-ones (often turned caretakers) and are easy to find online in the withdrawal support communities. For example:
It is also critical to note that medicine currently has no tool or method that can predict which patients will discontinue with ease. So, if “but rather, taper slowly” is all benzodiazepine prescribers are telling their patients about discontinuation at the time of prescription, patients are not being offered truly informed consent, in which an accurate risk-versus-benefit assessment can be made.
If you were tasked with self-amputation, Ralston would be your go-to man. Along similar lines, the authors of the Psychiatric Times article “Online Communities for Drug Withdrawal: What Can We Learn?,” in search of “insider information” about the complexities of medication withdrawal, visited BenzoBuddies and Surviving Antidepressants, large benzodiazepine and antidepressant withdrawal forums respectively, as well as performed some simple YouTube searches like “benzo withdrawal”. It was there they found and analyzed countless patient narratives and 14,000 video blogs ultimately leading them to accurately conclude that “physicians have been unprepared for these withdrawal disorders and are unable to treat or even guide patients through complicated withdrawal from these substances”.* So, this then raises the question: do you actually have to cut off a limb to truly understand how difficult it would be? Similarly, must all medical professionals (or anyone else, for that matter) become physically dependent on benzodiazepines themselves to really understand that, for a percentage, “slowly tapering” doesn’t even begin to scratch the surface of the experience? Perhaps, yes, in order to truly experience the “texture” of it. But, the psychiatrist-authors of the Psychiatric Times piece represent that it is still possible to draw reliable conclusions without having experienced something yourself; all that is required is interest, some research, open-minded critical thinking, a use of imagination, and, most importantly, a willingness to listen to and place value in the reports of those with lived-experience.
I’m not particularly unique or interesting, but if there were a survival thriller film made about my own experience, it would be titled 2,860 Days, the time to date (not including the years of tolerance and interdose withdrawal) spent with a brain and nervous system protractedly incensed from benzodiazepine insult. Much like viewers of 127 Hours were privy to Ralston’s regrets, those watching my film would see that I, too, have often rued the days I both started and stopped benzodiazepines; in fact, one aspect of my own self-condemnation, aside from ever believing these pernicious medications to be safe or necessary in the first place, specifically revolves around my (uninformed) consent to medically detox without having done more research. I was unaware, as too many medical professionals are, of the potentially devastating outcome of such a rapid cessation. Alas, Ralston wasn’t afforded the benefit of hindsight and neither am I. Besides, while I wish I would have encountered a “benzo wise” doctor who would have guided me through a much saner and safer slow tapering option, and, while experts make clear that over-rapid tapers and abrupt discontinuations absolutely increase the severity of symptoms and risk for protracted syndromes, what I am suggesting is that slow tapers are not a guaranteed painless exit plan or insurance against symptoms that persist months and even years post-cessation.
Nowadays, aside from his overstated assertion about his perceived ability to self-amputate, I can see the wisdom in the lesson my relative tried to impart all those years ago: what saved Ralston was not regretful retrospect, but rather courage and action. I now do my best to focus my energy on awareness and solutions. So, I write about this iatrogenic blunder and tell my story in hopes of helping others and because I feel a moral obligation to do so. I’m sure that is also why Dr. Huff tells hers; why psychiatrist Dr. Tom Stockmann talks openly about his similar SSRI withdrawal experience; and why cancer patients, military veterans, and countless others are willing to be so transparent, often at great social cost and in the face of naysayers, gaslighters, and those with a vested interest in silencing that part of the narrative. By doing so, we are offering a public health service consisting of the hard-earned knowledge we wish we had had access to before we were prescribed a benzodiazepine. Patients deserve truly informed consent, and prescribers need to be aware that when they prescribe patients a benzodiazepine for more than a few weeks, they are inadvertently trapping a percentage in their own personal slot canyons of hell for which there are scant available resources or support to extricate themselves. Prescribers, as well as current and would-be benzodiazepine consumers, need to understand one very serious reality of taking a benzodiazepine long-term — for some people, attempts at stopping can equate more closely to surviving their prescription than to “but rather, slowly tapering” it.
*Note: To learn more about the Psychiatric Times article, reference the following podcast interview (23:21) where Dr. Josef Witt-Doerring expands on how he and his co-authors came to their conclusions.
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.