Who would have thought that a harmless prescription from a trusted doctor would destroy my life and my health? During my mid-20s, I experienced strange symptoms that didn't fit with any specific diagnosis. They seemed to imitate variouschronic and rare diseases, so I underwent invasive tests and consulted more than 70 specialists for accurate diagnosis and help. Other than an occasional scare and a cancer misdiagnosis, everything is back to 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: the Ativan prescription, which I have been taking daily since 2009. Ativan was initially prescribed to prevent seizures after an accident. At that moment I only have onemild warning about the addictive potential of the drug, and otherwise made sure of their safety. I took it exactly as prescribed. I even asked some of my experts if Ativan could be responsible for my problems. They assured me no. But then it became the only thing that had made sense in years. Everything fits. Dosing timings, possible side effects I wasn't warned about, and a weird period with apoor interaction with fluoroquinolonesi.e. known to me now known to interact poorly with benzodiazepine takersphysical dependence🇧🇷 Although I was very angry that I wasted years of my life chasing down a phantom disease, I also felt a sense of relief. I could get out of this nightmare. Now, finally, there was hope of escape: I could get off the medication and get on with my life, perhaps with my health fully restored.
Not so fast.
consulting the experts
I quickly discovered a monumental problem:modern medicine is largely incompetent with benzodiazepines.This is especially surprising when you consider that benzodiazepine withdrawal is one of the deadliest known to medicine. Everything the doctors suggested not only failed, but made the situation much worse. Some of the ideas presented, which I later found to be life threatening, included:abrupt cessation,admission to a detox center, a rapid bottleneck of a month,eliminating one dose per week, alternating between different shorter- and longer-acting benzodiazepines (usually at incorrect equivalence rates), taking two benzodiazepines simultaneously to "cancel" the symptoms, randomly adding medications, putting myself in a voluntary coma, and most disturbingly and unhelpfully, total denial of the problem. Two doctors even "fired" me as a patient, implying that I was a risk. It was like I was being gaslighted. I completely lost confidence in medicine, but I kept trying. This could not be. Surely someone would eventually know what was going on.
Little by little I realized the reality of my situation: I was stuck with a medication that was making me sick, that I no longer wanted to take, and I was completely on my own to figure out how to get off it.See AlsoOlanzapine (Zyprexa) | NAMI: National Alliance on Mental IllnessFluvoxamine (Luvox) | NAMI: National Alliance for Mental IllnessSertraline Retreat | RxISKAntidepressants: taking other medications with antidepressants: sleeping pills, anxiety medications, antipsychotics, mood stabilizers, and over-the-counter medications
But no one did. Explanations, medical opinions and proposed options onlyit kept getting more absurd, which ultimately culminated in the admission of some doctors: “It only happens to some patients. I have no idea what to do for you. You must continue to take medication for the rest of your life.” He was stunned. No answer available? Was his solution to him simply that I was stuck in the hell of his creation for the rest of my life with no help? A lifetime of feeling this way was simply not an option for me. Not to mention, I had a lot of concerns about the risks of taking benzodiazepines during pregnancy and wanted to get off benzodiazepines before starting a family. Little by little I realized the reality of my situation: I was stuck with a medication that was making me sick, that I no longer wanted to take, and I was completely on my own to figure out how to get off it.
The online benzodiazepine community
Leaning in a corner, I googled it. To my relief (and horror at the same time), I was not alone. I discovered manyFacebook benzodiazepinasupport supportgroups and a forum calledBenzo's Friends—their collective memberships number more than eighty thousand people. None of the people inthe groups were surprised🇧🇷 They also had similar experiences with useless and oftenharmful directionfrom their doctors in their own cessation attempts. In addition to much-needed sympathy and validation, the groups gave me what I wanted most: solutions. They warned that the process was unlikely to be easy, as certainpercentage of patientsYou may have complicated and painful withdrawals. I didn't care, I was totally in. I finally understood what was happening and a plan to follow. I was willing to give up everything to get my health back. And I almost did.
In the communities, I learned that the strange set of symptoms I had been experiencing for years came from a few things:dose tolerance,interdose withdrawal, miCollateral damage🇧🇷 It was emphasized that benzodiazepines should be tapered off gradually, over a year or so, usually longer. Abrupt or rapid withdrawal at home or in detox/rehab centers is strongly discouraged by the community due to the increased risk of severe withdrawal (seizures, psychosis, a dying movement disorder calledakathisiaand/or suicide) andprolonged withdrawal syndrome🇧🇷 The goal of a slow taper is to maintain a stable serum level by maintaining uniform doses throughout the day and titrating slowly to a tolerable rate. For me, I would find that there is no such thing as a completely tolerable rate, just a less severe one. Finally, I was told that even after completing a long, slow taper, some people would need another year, or even many more, to fully recover from the ill effects of the medication.
All the smoking cessation methods that the doctors proposed to me were very quick and indicative of a very common fundamental misunderstanding about benzodiazepines and their mechanisms of action.
I began to recognize that my benzodiazepine treatment had been mismanaged from start to finish. I had not giveninformed consentwhen I started Ativan, as I was not given a complete picture of the risks involved. In particular, the risk of developingphysical dependencea very physical phenomenondifferent from addiction🇧🇷 The medical industry often confuses addiction with physical dependency, resulting in confusion and mistreatment. I found that I should never have been taking Ativan daily for more than 2-4 weeks, longerprescription guidelinesmiFDA Prescribing Information🇧🇷 All the smoking cessation methods that the doctors proposed to me were very quick and indicative of a very common fundamental misunderstanding about benzodiazepines andits mechanisms of action🇧🇷 I also found that, as I was told, I was not taking a "low dose" of a benzodiazepine, but a moderately high dose (not that it matters - dependency, tolerance, interdoses and side effects all develop innodose). Ultimately, I discovered that my doctors' suggestions of adding additional psychiatric medications as a supposed "aid" to benzodiazepine withdrawal are specifically discouraged in theBritish National Formulary Benzodiazepine Guide.
If that wasn't enough, I soon ran into another silly hurdle: Most benzodiazepines arenot availablein dose sizes or forms ideal for smoking cessation. Fortunately, the online retirement communityi found thatwhat's more. Imagining where I would be without these communities is scary. Most likely, I, like so many people today, would continue to be blindly medicated, in a significantly worse state of tolerance, without knowing why,spend a fortuneinvestigating the symptoms, or worse, withdrawing quickly or having given up entirely.
I initially reduced using theashton's manual,a guide explaining how benzodiazepines work and how to withdraw them, by psychopharmacologist Dr. Heather Ashton. She is highly regarded in the community for her work at a clinic for benzodiazepine patients in the UK. Using her method, the dose is reduced by 5-10% at one time and is maintained until the symptoms subside, at which point the process is repeated.
Despite my best effort, each "cut" turned out to be too big for me, further destabilizing me and creating alaundry list of new intolerable daily symptoms, including: migraines, numbness, hallucinations, spasms, spasms, blurred vision, eye pain, feeling like you are in a rocking boat (similar to debarquement syndrome),agoraphobia, panic attacks, hyperacusis, sensitivity to certain foods and chemicals, memory loss, confusion, unexplained toothache, burning nerves, shingles, skin rashes, chronic itching, tinnitus, olfactory hallucinations, hot flashes, and colds, 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 "micro-sharpening."microreductionyou're essentially making small reductions (micrograms, rather than milligrams) more often, which add up over time. For me, the microtaper made the symptoms more bearable, reducing the chronic agitation and suicidal thoughts to a level where I felt safe not to end my life, while also eliminating the hallucinations. The other symptoms remain prominent and disabling to this day.
I already cut it four and a half years ago, and I predict it will take more than five in total. Even at this slow pace, the process of reversing my body's physiological dependence on benzodiazepines completely destroyed what was left of my health and the life I once had.
I already cut it four and a half years ago, and I predict it will take more than five in total. Even at this slow pace, the process of reversing my body's physiological dependence on benzodiazepines completely destroyed what was left of my health and the life I once had. My constant symptoms cause physical, mental and psychological limitations in all areas of my life. Many of my relationships have also dissolved, with friends and family continuing on with their own lives while I remain stuck waiting for my nervous system to slowly recover.
This syndrome is notalarming and well-known word attachedto him, like "cancer" or "car accident," which instructs people on how to help. It is an almost silent epidemic, with no instructions for those inside or outside of it. Most people come to the conclusion that I must be overreacting, or not trying hard enough, maybe I'm addicted to denial, or some other excuse to blame myself, which is usually well founded, since it's little It's probably a trap, something like that would be. pass seriously obviously be widely recognized by medicine. Not so. It all comes down to this: I and many thousands of others in the same situation are in dire need of non-medical support.precisely becausemedical examination is scarce or non-existent, but as a direct consequence of this medical denial, non-medical support also abandons us.
Strangely, I am considered lucky; many do not go as far as I do to solve their own problems with benzodiazepines. They go to their graves wondering what suddenly went wrong.
Strangely, I am considered lucky; many do not go as far as I do to solve their own problems with benzodiazepines. They go to their graves wondering what suddenly went wrong. The barriers to discovery are immense. Accurate answers to the problem are not readily available, while harmful and wrong answers abound. Surviving termination is the hardest fight in ten lifetimes. It is long-term physical torture without social validation or financial restitution. A lots ofi can't drivemiend their lives.
Build a coalition for change
I strongly believe that as long as patients receive true informed consent, treatment choices for their own bodies should be made for them. That being said, it is quite clear to me that prescribers often do more harm than good with this class of drugs, and competent resources need to be immediately in place for the injured. We cannot trust medicine or legislation, as they havecould not solve this problemsince the 1950s. It is also clear that patients who are already physically dependent and do not wish to withdraw should not be forced against their will. Many understandably do not want to do this or are not financially privileged enough to be able to attempt it. No one should be forced to go to Hell against their will, especially when they didn't agree to take the risk to begin with. In my opinion, the most critical concerns must include: medical examination of withdrawal symptoms, appropriate tapering methods, and investigation into the nature of the potential harm of long-term prescriptions.
From informed consent at the time of prescription to proper cessation treatment, we hope to end this dark era of prescriber ignorance, thereby reducing patient harm and giving this epidemic, and the patients affected by it, recognition. and the attention they deserve.
In 2016, to occupy my time and try to help those who are also injured, I founded a non-profit organization calledBenzodiazepine Information Coalition(B.I.C.). we have an amazingmedical adviceas well as dedicated volunteers, many of whom have been harmed by the benzodiazepines themselves. We've had a busy 2 years, appearing in variousmajor news outletsand participating frequentlyoutreach efforts🇧🇷 Our goal is to contribute to public awareness aboutthe benzodiazepine problem, in addition to providing patients and professionals with much-needed information and educational resources. Sinceinformed consentat the time of prescription for the correct management ofcessation, we hope to end this dark era of prescriber ignorance, thereby reducing patient harm and giving this epidemic, and the patients affected by it, the recognition and attention it deserves.