S-O-S Best of the Best (BoB) is a collection of bloggers who come together once a month to write on one topic pertaining to “invisible” special needs, including ADHD, autism, anxiety, sensory processing disorder, and mental illness. I was asked to contribute a post for this month’s topic on the use of medications. The following excerpt from my new book, Blazing My Trail: Living and Thriving with Autism, discusses my experience of taking Lorazepam, a benzodiazepine, and the healing I’ve found since withdrawing from the medication.
My Experience with Lorazepam
“The biggest drug-addiction problem in the world doesn’t involve heroin, cocaine, or marijuana. In fact, it doesn’t involve an illegal drug at all. The world’s biggest drug-addiction problem is posed by a group of drugs, the benzodiazepines, which are widely prescribed by doctors and taken by countless millions of perfectly ordinary people around the world.” — Vernon Coleman
In February of 2005, to treat an increase in my level of anxiety, my primary care doctor prescribed a medication called Lorazepam. Little did I know that taking this drug would send me on a years-long journey of coping with ever-increasing depression, fear, loss of functioning, and social isolation.
Fortunately, in 2010, I changed course and began walking a new road. I engaged in the process of learning about how the medication had affected my life, and I went through the ordeal of weaning off it. As a result, my high level of functioning, my independence, and my zest for life have all returned.
Medication Withdrawal and Other Delights
From early 2005 until early 2009, I took one 0.5 mg tablet of Lorazepam upon awakening in the morning and another before going to sleep at night. After I had been on the medication for four years, another doctor increased the dosage to 0.5 mg in the morning and 1.0 mg at night. By early 2010, I was taking 2.0 mg per day. A third doctor also put me on Zoloft (an SSRI) and Topamax (for migraine prevention), in addition to Lorazepam and Amitriptyline (a tricyclic antidepressant).
By the spring of 2010, I had begun to realize that the medications, far from helping me, were making it increasingly difficult to manage my life. I was crying almost every day and I was nearly housebound. So I began the process of weaning off all of them — without medical supervision. My primary care doctor had fired me from her practice after I asked for accommodations for my disability, and it took me over a month to find another doctor who would accommodate me and guide me through the weaning process.
Meanwhile, I was on my own.
Tapering off Zoloft, Topamax, and Amitriptyline posed no problem whatsoever. Quitting Lorazepam, however, was another story. After attempting to withdraw from Lorazepam by decreasing my dosage by 0.5 mg per week, I suffered an acute reaction. I began to
have a tremendous amount of anxiety, and my sleep worsened. After I stopped taking the medication altogether, I hardly slept for two nights. I was sweating through my clothes. I was crying and frightened. I was in so much physical pain that it was almost unbearable. I felt as though my body and mind were coming apart. I found myself pacing up and down the floors of our house saying, “Misery, misery, misery.” Without a physician to consult, I couldn’t understand why the withdrawal was having this impact.
With nowhere else to turn, I went online and looked up information on how to taper off Lorazepam without pushing myself to the edge of sanity. When I did, I found out that it’s a benzodiazepine and a tranquilizer. In other words, it’s in the same category as Valium and Librium, and it’s highly addictive. In fact, in 1975, the U.S. Department of Justice demanded that benzodiazepines be classified as schedule IV drugs under the Controlled Substances Act.
And yet, this medication had been prescribed for me by three different doctors — even after I had told them, in no uncertain terms, that I absolutely did not want to take anything narcotic or addictive. What part of that statement did they not understand? Or did they just not know what Lorazepam does?
As I soon found out, I was not alone in suffering acute withdrawal symptoms. According to Professor Malcolm Lader, member of the UK Committee on the Review of Medicines, Lorazepam is a particularly difficult drug to withdraw from. “When somebody comes into my office and says that they’ve been trying to stop their Lorazepam,” he said, “my heart sinks, because I know I shall have twice as much of a problem as getting them off, say, Valium. The symptoms are more severe, they’re more persistent, more bizarre, and people are much more distressed by them.” (Ashton, “A Problem”)
In my online travels, I found a support site for people seeking to withdraw safely from benzodiazepines — and I learned that, when done properly, the process takes six to 12 months. So, in early May of 2010, I put myself on a stabilization dose of 1.5 mg per day, and I found myself able to sleep and to tolerate being in my body again. After three weeks, I began tapering very slowly, cutting my dosage by very small decrements, until I finally finished my taper, under the care of a new primary care doctor, eight months later.
Suffice it to say that, even over the course of a slow taper, the withdrawal process was brutal. Every time I made a cut in my dosage, I experienced extreme amounts of muscle pain, insomnia, anxiety, depression, and exhaustion. I was determined to rid Lorazepam from my body, though, and by the grace of God, I have.
But the havoc this medication wrought over the years I took it is, unfortunately, an all-too-common effect of benzodiazepines.
Daily Interdose Withdrawals
Lorazepam is a short half-life benzodiazepine. On average, the dose reaches its peak blood levels in about seven to eight hours. As I came to understand how quickly the concentration of the drug in my bloodstream was falling each day, my experience of the previous four years started to come into focus. Because I had been taking the medication only in the morning and in the evening, I had been going through interdose withdrawals on a daily basis, with all the same symptoms that would attend my eight-month taper.
That’s right: I had been having withdrawal symptoms every single day for four years. No one had ever warned me about how the medication worked, so I couldn’t figure out why I was on such a physical and emotional rollercoaster ride. Nothing in my life seemed to account for it, and the only response from my prescribing doctors was to increase my dosage.
These increases did not work. In addition to the impact of falling blood concentrations, daily withdrawal symptoms occur because of the tolerance that the body develops, very quickly, to the drug itself. As Dr. C. Heather Ashton writes in Benzodiazepines: How They Work and How to Withdraw, these drugs “lose much of their efficacy because of the development of tolerance. When tolerance develops, ‘withdrawal’ symptoms can appear even though the user continues to take the drug.” (Chapter II)
Because they quickly become ineffective and trigger daily withdrawal symptoms, benzodiazepines cause a host of problems, many of which they were intended to manage. In early 2009, after four years of benzodiazepine use, I exhibited difficulties common to benzodiazepine users. I was crying on a regular basis. I was falling into a depression unlike anything I had ever experienced. My anxiety was nearly paralyzing. And I had become almost housebound. The outside world felt overwhelming, and going out triggered both fear and exhaustion.
All of these symptoms amount to a textbook case of the impact of benzodiazepines. In her research, Dr. Ashton determined that people who use these drugs become ill with a number of psychiatric conditions. “Many patients,” she writes, “find that anxiety symptoms gradually increase over the years despite continuous benzodiazepine use, and panic attacks and agoraphobia may appear for the first time after years of chronic use.” She adds that long-term benzodiazepine use can cause depression in people with no history of it and can aggravate depression in people already suffering from it. (ibid, Chapter I)
Heightened Sensory Sensitivity
As a person with autism, I found that all of the symptoms that attend benzodiazepine use were exacerbated by the impact of interdose withdrawals on my sensory functioning.
By early 2009, I was more sensory sensitive than I had ever been in my life. Sometimes, my skin felt like tissue paper; at other times, loud noises were enough to send me into physical pain that took me days to recover from. Light seemed very bright, and I began wearing sunglasses, even on winter days. I became overwhelmed by this sudden severe spike in sensitivity, and every foray into the outside world took all the courage and energy I could muster. My level of functioning decreased significantly. Most days, I just stayed home. I couldn’t figure out what was happening.
Then, I read Dr. Ashton’s findings on benzodiazepine withdrawal and sensory sensitivity. She notes that “a characteristic feature of benzodiazepine withdrawal is a heightened sensitivity to all sensations — hearing, sight, touch, taste and smell. When extreme, these sensations can be disturbing.” She describes one woman needing to stop all the clocks in her house because their ticking seemed unbearably loud. Others have had to wear dark glasses because ordinary light seemed “dazzlingly bright.” (ibid, Chapter III) I’d finally found an answer to the question of why my sensory sensitivities had increased so dramatically in a relatively short period of time: the daily interdose withdrawals were sending my already acutely sensitive system into overdrive.
After four years of benzodiazepine use, I could barely socialize at all. I felt very isolated and I suffered from severe levels of stress that were lowering my levels of functioning. As I learned about the havoc that these drugs wreak, I considered myself lucky to be tapering off them before they stole any more years from my life.
Recovering from Benzodiazepines
The good news is that my functioning and my quality of life have improved dramatically since withdrawing from Lorazepam. Just halfway through a difficult taper, I found my mind becoming clearer and my mood lifting. I felt more physically and emotionally resilient than I had in years.
As my taper progressed, I began to feel alive again. I still had my sensory-sensitive “I don’t want to go anywhere” days, but even on those days, I forced myself to go out for a walk, just to keep intact my connection to the world. In so doing, to my great surprise, I found my connection to the world not limited to human beings, but to all of creation. I began to walk and appreciate the trees, the colors, the breeze blowing — even the humid weather of a New England summer. I carried my camera with me everywhere and I took pictures that enabled me to see hidden things, simple things, beautiful things that I’d never registered before. Suddenly, the world became a fascinating place. Ultimately, I entered three of my best photos in a local contest, won second prize, and had the pleasure of seeing my work displayed in town with that of other photographers.
Since I’ve withdrawn from the medication entirely, the positive effects have only increased, and my sensory sensitivities have quieted down appreciably. I go out every day, in any weather, even in winter. I’ve made new friends and rekindled relationships with old ones. The depression and agoraphobia are both entirely gone, and my high levels of functioning and independence have returned.
My experience is not unique. In 1991, Karl Rickels, a researcher at the University of Pennsylvania School of Medicine, reported that patients who had gotten off benzodiazepines were doing “significantly” better than those who had failed to do so. A few years later, he found that after long-term users withdrew from benzodiazepines, they “became more alert, more relaxed, and less anxious, and this change was accompanied by improved psychomotor functions.” (Whitaker, 136-137)
As for Dr. Ashton, she found that agoraphobia in her patients disappeared within a year of withdrawal, even in patients who had been housebound. Furthermore, most users experienced a dramatic increase in quality of life after withdrawal:
“Clinical experience shows that most long-term benzodiazepine users actually feel better after coming off the drugs. Many users have remarked that it was not until they came off their drugs that they realised they had been operating below par for all the years they had been taking them. It was as though a net curtain or veil had been lifted from their eyes: slowly, sometimes suddenly, colours became brighter, grass greener, mind clearer, fears vanished, mood lifted, and physical vigour returned.” (ibid, Chapter II)
When I was on benzodiazepines, my emotions were scattered, my sensory sensitivities were through the roof, and I found it difficult to think clearly. Since I’ve stopped taking them, my emotions have become much more moderate, positive, and under my control; my sensory sensitivities have become much more manageable; my thoughts have become sharper by the day; and, best of all, my passion for living has returned.
References
Ashton, C. Heather. “Benzodiazepines: How They Work and How to Withdraw.” benzo.org.uk. August 2002, revised. Accessed 21 June 2011. http://www.benzo.org.uk/manual/
—-. “A Problem with Lorazepam?” benzo.org.uk. 1988. Accessed 21 June 2011. http://www.benzo.org.uk/ashloraz.htm
Coleman, Vernon. Life without Tranquillisers. Large print ed. Bath, England: Chivers, 1990.
Whitaker, Robert. Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America. New York, NY: Crown Publishers, 2010.
© 2011 by Rachel Cohen-Rottenberg
