Trigger warning: My recovery story includes seizures. Please don’t let it scare you. I had them as a child, which makes me susceptible. They are extremely rare for those who taper. And if you’re tapering, or reading this early into your recovery, please know that severely protracted cases are not the norm. I once asked my neurologist, who had been practicing for 30 years, if he had ever encountered a case like mine, and he hadn’t.
And on that note…
I’m here to let you know getting free of these drugs is possible, even at high doses, after years of use. And for many of us, "withdrawal symptoms" are so unbearable that living with them indefinitely isn’t an option. The people who recover and share their stories of hope, ensuring us that “time will heal”, is what keeps us alive.
So here I am, almost six years later, after an excruciating 16-month taper, to reassure you that TIME IS TRULY THE HEALER! I even had multiple seizures during acute waves the first 4.5 years off, and was forced to take seizure meds, and STILL my wonderful brain is able to heal.
Like so many of you, I was sick from Klonopin for over a decade before attempting to taper off. When I asked for help, I was just misdiagnosed with various disorders and ailments, and prescribed additional meds (sleeping pills, SSRIs, on and on) to treat symptoms of tolerance withdrawal. All of them only added to my suffering, and were also painful to discontinue, but nothing like the horror of benzo withdrawal/injury. After I took my first 10% cut, even though my world as I knew it fell apart, there was no turning back. I knew the only chance I had at a happy life was getting off these meds, and giving myself time to recover.
Of course many people aren’t privileged enough to take a multi-year healing break from their lives, and don’t have family, friends, and doctors to support them in a slow taper and long recovery. I couldn't have managed this if I had children to care for, or was forced to work, or didn't have the support of my husband day after day, rooting me on, making sure I was safe, and had all I needed to cope and recover.
I know it’s almost impossible to stay hopeful when you’re being tortured and traumatized by your own nervous system. I understand the daily risk calculations you have to make, deciding if doing Y is worth X days or weeks suffering that may follow. The pain of being blamed for your symptoms, or told that it’s all in your head, or that somehow you’re invested in being ill. The loss of friends, family, career, financial stability, on and on. Our hair falls out, our bodies bloat, our eyes blur, our skin burns, we feel like we drank a gallon of poison, we lose our memory, and are tormented by looping intrusive thoughts, and gnawing feelings of shame, regret, fear, and grief. We exist in a dissociated trauma state, disconnected from ourselves, and those we love. The symptoms are endless, terrifying, painful, frustrating. I can’t believe some of the things I managed to do while in this state. But we learn to accept, and endure, year after year.
And like many of us, I tried everything to help my poor brain heal, no matter how scared or sick or dizzy or sleep deprived or hopeless I was feeling. I did my best to “suffer with dignity and grace”, and do what I could to keep my body healthy, and my life and relationships kinda/sorta intact. I had terrible acute-like waves up until the end, but always emerged from them with a little higher baseline, noticing I was able to do a bit more - sit up at my desk, talk on the phone with a friend with ease, sleep through the night, get groceries on my own, compose an email, remember a recipe, or handle a stressful event without taking a nosedive.
I’m not symptom-free yet, but slowly life has started to fill up with more than surviving and coping. I’m now (finally) ready to return to work, and even joined an Afro-Brazilian drumming group last month. Yes, that’s right - my nervous system can now handle learning a new instrument, memorizing complicated songs, banging away on drums, and dancing for hours! And wow, getting back to work after a 7-year leave is not going to be easy, but I’m just so grateful that I’m finally able to.
Please never give up. Keep plugging away day after day, year after year, because eventually the torment will end. And please know what others have said is true - all these years of suffering are not wasted, because you’ll emerge from this a better version of yourself. I learned acceptance, gratitude, and how to be kind to myself. I forgave those who have harmed me in the past, let go of grudges, insecurities and hangups. Gifts continue to be revealed as healing time passes.
It’s crazy, but we were given these drugs for anxiety and it took coming off them to actually become fearless. My deep gratitude to everyone on this site who helped me get to the other side.
Love and solidarity,
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