Who knew a harmless prescription by a trusted physician would destroy my life and health? For half of my twenties I experienced bizarre symptoms that didn’t fit any specific diagnosis. They seemed to mimic several chronic and rare illnesses, and so I subjected myself to invasive tests and saw upwards of 70 specialists in search of an accurate diagnosis and help. Apart from the occasional scare, and one cancer misdiagnosis, everything came back normal. I was falling into the “all in your head” category.
Fortunately in 2014, the medical mystery was solved. An extremely competent psychologist was able to identify the surprising source: prescription Ativan, which I had been taking daily since 2009. The Ativan was initially prescribed to prevent seizures after an accident. At the time, I was only provided with a bland warning about the medication’s potential for addiction, and was otherwise assured of its safety. I took it exactly as prescribed. I even asked a few of my specialists if the Ativan could potentially be responsible for my problems. They assured me it was not. However, it started to be the only thing that had made sense in years. Everything fit. The timelines of dosing, the potential side effects I wasn’t warned about, and a strange period with a bad interaction with fluoroquinolones that is, known to me now, notorious for interacting poorly with those with benzodiazepine physical dependence. While I was very angry that I wasted years of my life chasing a phantom illness, I also felt a sense of relief. I could get out of this nightmare. There was now, finally, hope for escape— I could rid myself of the medication and move on with my life, maybe with fully-restored health.
Not so fast.
Consulting the Experts
I quickly discovered one monumental problem: modern medicine is largely incompetent regarding benzodiazepines. This is especially surprising considering benzodiazepine withdrawal is one of the deadliest known to medicine. Everything physicians suggested not only failed, but also made the situation much worse. Some of the ideas posed, that I would discover later were potentially deadly, included: abrupt cessation, admission to a detox center, a rapid month-long taper, removing one dosage per week, switching amongst different shorter- and longer-acting benzodiazepines (usually at incorrect equivalence rates), taking two benzodiazepines simultaneously to “cancel out” the symptoms, adding random medications, placing me in a voluntary coma, and, most upsetting and unhelpful, total denial of the problem altogether. Two physicians even “fired” me as a patient, implying I was a liability. It was as if I was being gaslit. I lost confidence in medicine altogether, but kept trying. This couldn’t be. Surely, somebody would eventually know what was going on?
But nobody did. The explanations, medical opinions, and proposed options just continued to get more preposterous, finally culminating with a few doctors admitting, “This just happens to some patients. I don’t have a clue what to do for you. You should stay on the medication for the rest of your life.” I was stunned. No answers were available at all? Their solution was simply that I was stuck in a hell of their creating for the rest of my life with no help? A lifetime of feeling this way simply wasn’t an option for me. Not to mention I had many concerns around the risks of taking benzodiazepines during pregnancy, and wanted the benzodiazepines out of the way before starting a family. The reality of my situation slowly sunk in: I was trapped on a medication that was making me sick, that I didn’t want to take anymore, and I was completely on my own to figure out how to get off of it.
The Online Benzodiazepine Community
Backed into a corner, I Googled. Much to my relief (and simultaneous horror), I was not alone by any stretch. I discovered many Facebook benzodiazepine support groups and a forum called BenzoBuddies— their collective memberships totaling over fifty thousand people. None of the people in the groups were surprised. They, too, had similar experiences with useless and often detrimental direction from their doctors in their own attempts at cessation. Beyond some much-needed commiseration and validation, the groups provided what I wanted the most: solutions. They warned the process most likely would not be easy, as a certain percentage of patients can have complicated and painful withdrawals. I didn’t care, I was all in. I finally had an understanding as to what was going on and a plan to follow. I was willing to give up everything to recover my health. And I almost did.
From the communities I learned that the strange cluster of symptoms I had been experiencing for years was from a few things: dose tolerance, interdose withdrawal, and side effects. It was stressed that benzodiazepines must be tapered slowly, about a year or more, often longer. The community strongly discourages abrupt or rapid withdrawal at home or in detox/rehab centers due to the increased risk for severe withdrawal (seizures, psychosis, an agonizing movement disorder called akathisia, and/or suicide) and protracted withdrawal syndrome. The goal in a slow taper is to keep a stable serum level, maintaining even doses throughout the day, and to slowly titrate at a tolerable rate. For me, I would discover, there is not a completely tolerable rate, just a less severe one. Finally, I was told that, even after completion of a long, slow taper, some people would require another year, or even many more, to fully recover from the medication’s damaging effects.
I began to recognize that my benzodiazepine treatment had been mishandled from beginning to end. I had not been given informed consent when initiating Ativan as I was not provided the full picture of the risks involved. In particular, the risk of developing physical dependence, a physical phenomenon much different from addiction. The medical industry often conflates addiction with physical dependence, which results in confusion and mistreatment. I discovered I should never have been kept on Ativan daily for more than 2-4 weeks, per most prescribing guidelines and FDA Prescribing Information. Every cessation method proposed to me by doctors was much too rapid and indicative of an all-too-common fundamental misunderstanding of benzodiazepines and their mechanisms of action. I also discovered I was not, as I had been told, on a “low dose” of a benzodiazepine, but a moderately high one (not that it mattered— dependence, tolerance, interdose and side effects develop at any dose). Finally, I found my doctors’ suggestions to add additional psychiatric drugs as a supposed “aid” to benzodiazepine withdrawal is specifically advised against in the British National Formulary’s Benzodiazepine Guidance.
If that wasn’t enough, I soon encountered another absurd hurdle: most benzodiazepines are are not available in dose sizes or forms optimal to cessation. Luckily, the online withdrawal community figured this one out as well. Imagining where I would be without these communities is terrifying. Most likely, I would, like so many people currently are, still be blindly medicated, in a significantly worse state of tolerance without any knowledge as to why, spending a fortune investigating symptoms, or worse, rapidly withdrawn or having given up completely.
I initially tapered using the Ashton Manual, a guide explaining both how benzodiazepines work and how to withdraw, by psychopharmacologist Dr. Heather Ashton. She is highly regarded within the community for her work running a clinic for benzodiazepine patients in the United Kingdom. Using her method, one cuts their dose by about 5-10% at once and holds until the symptoms abate, at which time the process is repeated.
In spite of my best effort, each “cut” proved to be too large for me, destabilizing me further, and creating a laundry list of new intolerable daily symptoms, including: migraines, numbness, mania, hallucinations, twitching, spasms, blurred vision, eye pain, a sensation of being on a rocking boat (similar to mal de débarquement syndrome), agoraphobia, panic attacks, hyperacusis, sensitivity to certain foods and chemicals, memory loss, confusion, unexplained tooth pain, burning nerve pain, shingles, rashes, chronic itching, tinnitus, olfactory hallucinations, hot and cold flashes, suicidal ideation, nausea, depersonalization, derealization, dizziness, insomnia, and many others.
After about a year and a half of the “cut-and-hold” method, I decided to switch to a more popular method called “microtapering”. Microtapering is essentially making small (microgram, as opposed to milligram) reductions more frequently which add up over time. For me, the microtaper made the symptoms more bearable, reducing the mania and suicidal ideations to a level where I felt safe I would not end my life, while eliminating the hallucinations. The other symptoms remain to this day prominent and disabling.
I have tapered four-and-a-half years now and predict it will take over five in total. Even at that slow rate, the process of reversing my body’s physiological dependence to benzodiazepines has completely destroyed what was left of my health and the life I once had. My constant symptoms cause physical, mental, and psychological limitations in every area of my life. Many of my relationships have dissolved, as well, with friends and family moving forward in their own lives while I remain stuck waiting on my nervous system’s slow repair.
This syndrome doesn’t have an alarming and well-known word attached to it, like “cancer” or “car accident,” that instructs people on how to help. It’s a mostly silent epidemic without any instructions for those on the inside or outside of it. Most people conclude that I must be exaggerating, or not trying hard enough, maybe I’m an addict in denial, or some other excuse that blames me, which is usually reasoned with it is unlikely to be this trapped, that something this serious would obviously be widely recognized by medicine. Not so. What it boils down to is this: Myself, and the many thousands of others in my same situation, are in dire need of non-medical support precisely because medical recognition is scarce or unavailable, yet, as a direct result of that medical repudiation, the non-medical support also abandons us.
I’m weirdly considered lucky; many don’t make it as far as me in solving their own benzodiazepine issues. They go to their graves wondering what suddenly went wrong with them. The barriers to discovery are immense. Accurate answers to the problem are not readily available, while incorrect and harmful answers are plentiful. Surviving the cessation is the hardest fight of ten lifetimes. It is long-term physical torture with zero societal validation or financial restitution. Many cannot cope and end their lives.
Forming a Coalition for Change
I firmly believe that so long as patients are given true informed consent, one’s treatment choices for their own body should be up to them. That said, it is abundantly clear to me that prescribers often cause more harm than good with this class of medication and competent resources need to exist immediately for those injured. We can’t rely on medicine or legislation as they have failed to address this issue since the 1950s. It’s also clear that patients who are already physically dependent and do not wish to withdraw should not be forced against their will. Many, understandably, don’t want to do it or are not privileged enough financially to be able to afford to try. Nobody should be forced into hell against their will, especially when they didn’t consent to the risk to begin with. In my opinion, the most critical concerns should include: medical recognition of the withdrawal syndrome, appropriate tapering methods, and research on the nature of the potential damage by long-term prescriptions.
In 2016, to fill my time and to attempt to help those who are also harmed, I founded a nonprofit called Benzodiazepine Information Coalition (BIC). We have an amazing medical board, as well as dedicated volunteers, many of whom were harmed by benzodiazepines themselves. We have had a busy 2 years, appearing in several major news outlets and participating frequently in outreach efforts. Our aim is to contribute to public awareness of the benzodiazepine problem, as well as to give both patients and professionals much-needed educational resources and information. From informed consent at the time of prescription to the proper handling of cessation, we hope to end this dark age of prescriber ignorance, thereby reducing patient injury and giving this epidemic, and the patients impacted by it, the recognition and care that is deserved.
Janice Curle was working on her Masters in Clinical Psychology when she became disabled by taking Ativan as prescribed by her physician. She founded Benzodiazepine Information Coalition in 2016 to facilitate awareness, education, research and change.