I’ve received a lot of requests recently to share my story.
I’ll share it, in parts.
Reading about other people’s benzo withdrawal experiences can be triggering. Please, take good care of yourself and stop reading if your symptoms increase.
I hope that in sharing my story, friends and family of people in benzo withdrawal might have a better understanding about the benzodiazepine injury syndrome. I hope that anyone suffering from benzo withdrawal will be helped to hear that we do heal! In time. Even those of us who were/are badly damaged.
October 12, 2010, I put the “plug in the jug.” I stopped drinking every night. A week later, I started tapering off of 1 mg Clonazepam, the benzo I took for 18 years as prescribed. My doctor was ignorant about benzos (sadly, so many are) and told me to cut out 1/4 of the dose every week. I did as instructed. Three days later, all hell broke loose. DP/DR, insomnia, pain, disequilibrium, panic, fatigue, weakness, etc. I kept tapering because my doctor told me to. I got down to .325 but was bedridden and suffering horribly. I changed doctors, hoping to find someone who could help me.
My new doctor claimed to be an expert in benzo withdrawal. She told me to taper back up until I was more stable. That put me back at .9 mg and kindled; however, she nor I knew anything about kindling at that time. I tapered more slowly, managing to get to .625, but the symptoms grew worse. I was in horrible shape. Using a cane for balance, I visited an addiction specialist who promised me he was benzo-wise. Desperate for help, I believed him. He told me my dose was so tiny that it wasn’t doing anything for me, and I could quit, no problem. Mind you, my dose was equivalent to 12.5 mg of Valium, an amount that no one should stop abruptly. He wrote me a script for phenobarbital and sent me home to “detox for a few days.”
Three days later, I was taken to the emergency room and admitted to the hospital. My doctor came by and checked my blood pressure and pulse. “I’ve never seen a case like this,” he said, shaking his head as if I were some strange alien. (How many times have we heard, “Benzo can’t cause these symptoms” ?) He tripled my phenobarbital.
The hallucinations came with a vengeance: strange and horrid sights and sounds. My skin burned, and my bones rattled around in their joints. My bed felt as if it were tied to a bucking bronco; it heaved up and down with me holding for dear life. My cognitive abilities eroded until they were practically nonexistent. I lost the ability read, to think clearly, to spell common words. My short-term memory failed me; did I just eat, or was that yesterday? Panic set in, long hours of ice-cold terror coursed through my veins— my heart racing so fast, surely it would burst out of my chest. I was exhausted and too weak to move, but the internal agitation was so extreme that I was forced to pace. I lived in a world so far removed from normal that I doubted I would ever find my way back. A week later, I was released. One of my sons drove me home.
My apartment looked foreign to me. It smelled different. Felt different. I spent the next month in bed, or on my couch, out of my mind with fear. I visited the addiction specialist every week, but he had nothing for me other than to suggest medications that I knew from the benzo withdrawal community weren’t good to take. I tapered off the phenobarbital in a few weeks.
Four and a half months after my cold turkey, I didn’t think I could hold on anymore; the days were too tortuous. I ended up in the ER and was admitted to the psych ward. The doctors prescribed meds, but of course, they made my symptoms worse. I refused more doses. It was suggested that I go to Sierra Tuscon, a rehab facility in Arizona, even though there was absolutely no danger that I’d drink or take a benzo again. I packed my bags. (For the record, I’ll celebrate 11 years of sobriety on October 13. I celebrated 10 years off my benzo I took as prescribed on June 23.)
The flight was terrifying, even though one of my sons flew with me. I stayed in a hotel overnight until a man from the facility came and picked me up. I sat next to him in the car, confused as to how my life had unraveled to this point. My coaching career had been on an upward trajectory: a book on the market, radio and TV appearances, contributing articles for Psychology Today, and a possible reality show of my own had been discussed with two TV producers. Yet here I was, battered by my intrusive thoughts, my body twitching and hurting, trying to push down the terror crawling up my spine, watching the desert landscape go by.
“Take off all your clothes,” the nurse instructed during my intake session. Whatever little crumb of dignity I had been clinging to vanished into thin air. Cold hands on me, staring eyes searching all of me. I shivered, not from the cold but despair. Benzo withdrawal had taken everything from me; I hung my head in shame.
The doctors and counselors thought my symptoms were from unresolved trauma; they enrolled me in trauma courses. Never mind that I had trained under two of the top traumatologists in the world, Dr. Peter Livine and Bessel Van der Kolk, and studied social neuroscience post-doctorate. I could have taught the classes. A rigorous twelve-step program was required, of course.
None of my instructors were educated about benzo withdrawal. It seemed that they saw me only through the lens of addiction and trauma, never understanding that I was never a benzo “addict,” but instead, I had been chemically dependant. The withdrawal of the benzodiazepine caused the horrific symptoms I lived with day in, day out, not addiction, not my past trauma.
Six weeks after entering Sierra Tuscon, I rented a car and drove to San Diego to surprise my daughter. I have no idea how I managed that, for I was no better than when I first arrived. If anything, I was even more despairing: if “treatment” at an expensive facility hadn’t helped me, what would?
To be continued…