Personal Withdrawal Stories

In 1994, my nineteen-year old daughter, Cristina, was diagnosed with chronic myelogenous leukemia (CML). It was a diagnosis that came totally out of the blue and as a complete shock. Soon after she was diagnosed, it became clear that I wasn’t going to be able to sleep because of the tremendous stress, so I asked the very kind doctor who diagnosed Cristina if he could give me a prescription for something that would help me sleep. He agreed, and so began my “relationship” with Xanax. I had never taken anything like that before and didn’t know anything about it. All I knew was that as my daughter’s primary caregiver, I needed sleep in order to fight to keep her alive.

Flying from Anchorage to Cleveland while suffering from life-threatening akathisia was going to be a constant push-pull between the urge to freak out and maintaining my body and psyche so as not to scare the other passengers.

It's been five years today since I completed a six year withdrawal process from a large cocktail of psychiatric drugs. Today is also my 50th birthday which, frankly, seems much more remarkable to me at this point. Inside I am only aware of eternal youth. Upon having done an informal and small survey, it seems most people feel that way though it's not talked about much among the adults of our species. That which watches and experiences our lives in these bodies does not age. It's actually a wonderful thing. So I'm here wondering what comes next in this amazing trajectory which is the life being lived in this body that my parents called Monica.

My prayer to be taken out of my misery was answered, just not the way I used to envision. I managed to escape the system and here I am in the same lifetime, alive and well. I’m slowly getting acquainted with this new setup and am eternally grateful for yet another opportunity at life, which I hope does not slip through my fingers.

I began to have transient moments where I would feel oddly disconnected from my environment or wake up and feel like I was coming out of my skin. I did not know it at the time, but I was experiencing interdose benzodiazepine withdrawal and it would end up leading me down a path of polypharmacy.

The party would continue for a time, but an inevitable crash ensued. I left my family, was fired from my job for uncontrollably screaming at my boss, and gambled away whatever money I had left in the stock market. A debilitating depression soon began, of a magnitude I could not previously have imagined. I had lost everyone and everything in my life.

Those of us who question psychiatry’s relationship with medication may be be dismissed as ‘Pill Shamers’ or branded as irresponsible and dangerous voices by those who are convinced medication is the only way of treating someone’s ‘illness’. The debate can feel like a fight between two intractably opposed sides, giving the impression that we must either be ‘for’ or ‘against’ medication. Unfortunately the information and space needed to explore our complex relationship with medication – as practitioners and people – is in short supply, making the concept of informed choice a bad joke. Over the next two years, we will bring together a book made of contributions from people who have successfully taken control of their use of medication.

It was the first time in my Klonopin journey it occurred to me the problem might not be inherent in me. The problem might actually be the Klonopin. Convinced my very life was at stake, I made the firm decision to get off the stuff once and for all.

There were days that I’d wake up and all I could do was cry for no particular reason, just another miserable day of withdrawal. However, the idea of taking photos would get me out of the house. Especially on those days, the absolutely only thing that would get me to move at all was the idea of taking photos. One particular day, I was just crying, crying, crying, and as soon as I got to a beautiful spot that I loved, I stopped crying, took photos, and felt at peace. I even found that the days I felt the worst were the days I took the best photos.

What I have learned is that benzos don’t discriminate. They don’t care that you have a master’s degree or that you are a good person in the community or that you were just doing what the doctors told you to do and you were woefully ignorant and misinformed of their dangers.

The minute you sit down in the chair in a mental health professional's office, you’re no longer seen as a person. The mental health system is incapable of seeing past the solid wall of your current label. Their only cure is drugs. "First Do No Harm" are powerful words. It’s unfortunate they don’t apply to psychiatry.

My heart goes out to anyone experiencing withdrawal, but especially those who are so ill they can’t work and are struggling to navigate a heartless and cynical ‘benefits’ system. Their only crime is to have experienced difficulty from a prescribed treatment, yet they are treated as medical pariahs.

Many have asked: “Why doesn’t my doctor/provider know what is happening to me?” Benzodiazepine tolerance and withdrawal are not new. So, why isn’t it simple to diagnose and treat? As both a health care provider and a withdrawal sufferer, I’d like to offer an inside and outside perspective on this question.

If I had remained med compliant I wouldn’t understand the simple joys of caring about my hygiene and my surroundings. I’ve wanted to write about this for a long time but I’ve not done it and I think it’s because I still have shame around how slovenly I became. I hid it from others fairly well most of the time, but I couldn’t hide it from myself. The fact is the drugs stripped me of some very basic elements of human care. When one doesn’t care about their immediate environment and their bodies, they really just don’t care about themselves. It’s a very painful place to be and yet when it’s caused by drugs it’s all muted and weird and not really who we are at all and so really all that is left is horrible shame.

The childhood and psychiatric abuse altered my neurological, hormonal and other bodily functions and it was difficult to say which abuse left what mark. The doctors used medication to fix the changes and the taking of prescription pills became a habit. I took pills to calm me, pills to sleep, and pills to make me happy. A few months after stopping all medications, I was a bundle of nerves and I opened the cupboard for a pill. Living on autopilot as I had been doing for so long had to stop. I switched gears from absentmindedly resorting to pills, to purposefully calming myself without using drugs by breathing the way the psychologist had taught me.

My doctor insisted that my symptoms could not be associated with withdrawal – they had to be symptoms of an underlying condition. I have since learned from legitimate sources that protracted withdrawal syndrome from benzodiazepines can intensify long before it abates, with some symptoms lasting for years.

Nobody told me what it would be like when I first stopped taking antidepressants. The worst is definitely over, but I’m still experiencing some lingering side effects. When the hyper-arousal to sights and sounds kicks in and my head starts buzzing, I’ve learned some ways to cope.

I have hopes for the field of psychiatry. I hope the field will redeem itself, and redeem its practitioners, because they do have clinical skill and the opportunity to learn more and grow. Many of them, I believe, were just taught bad science, influenced and infiltrated by Big Pharma.

Jean was never warned about Librium's potential to cause physical dependence or the subsequent withdrawal effects that can result from its long-term use, nor was she counseled on an exit plan. So when she decided to taper off the drug, her withdrawal symptoms were so severe that her life and health quickly spiraled out of control.

I remember clearly thinking, “I’m done. I’m not putting myself through this again.” I wasn’t going to settle for the side effects of a marginally better than placebo treatment again. Here is a brief look into my rollercoaster journey of recovery, returning to work, having my trauma re-triggered, finding a way through, and finally living well.

It took surviving all of the symptoms of benzodiazepine withdrawal, including derealization, gastritis, auditory hallucinations, wasting, dementia, panic attacks and profound depression, for me to come to understand that not only had I really been a cool person before all that shit, but also that nothing was wrong with me. I was smart and a little neurotic at times, but that was it. Drugs caused me to be mentally ill where I had not been before.

How did I become someone who could barely function? I was a high-performing sales executive ranked in the top 2% of an international business communications company. But now, after using powerful psych meds for depression and anxiety for more than a decade, I couldn’t do basic things like go to the grocery store, plan a meal, make dinner, or get together with friends.

In searching for answers as to what went wrong with my treatment, my family and I discovered that there is already much scientific evidence demonstrating the dangers of antipsychotic medications and why they should not be used to treat illnesses such as Tourette Syndrome.

I am an award-winning singer/songwriter with a number one record to my credit. I also owned several small businesses and founded a 501c3 non-profit for women's health. I ate healthy, swam and cycled every day and had a very active lifestyle. This was before benzos came into my life.

Withdrawal felt like: evil feeding on my soul, my spirit being tortured, not being able to feel love, constantly feeling like I was falling in a dark tunnel, and wanting to get out of my body.