My story is a horror show, and it terrifies me. I feel doomed and depressed most of the time after learning about the long-term effects of benzodiazepines. On December 27th, my father passed away from complications due to a dementia-related illness that he had battled for more than five years, but I had started to conduct my research into the brutal pseudoscience of psychiatry years before – which included reading Mad in America, because of my frustrations and struggles with psychiatry.
In the beginning, my father (who did not drink or take psychotropic medications) was passive and befuddled, and then he became agitated and delusional. As the disease progressed, he became aggressive and violent. I was never truly scared of him because he no longer had the physical strength and coordination to become truly destructive, but on one too many occasions, he placed his own life in danger; and he became especially agitated when my mother was not at home, so I took the brunt of his increasing hostility and outbursts. As a result, his doctor put him on a combination of Haldol and Ativan. When I learned about this new cocktail, I explained to my mother that it was “not treatment, but a slow form of euthanasia.”
And I was right: he was dead within three weeks. He turned into a slobbering zombie: the physical rigidity, the backup of saliva, the rapid deterioration of motor skills and an apparent lack of appetite made it almost impossible to feed him. In two weeks – probably because he was malnourished and dehydrated – he caught pneumonia, and then he died about five days later.
I was there when he died, and my mother asked me to check and make certain he was gone. In my mind, I knew it was not in my best interests to see his body. I knew it was likely to trigger heightened anxiety and possibly panic attacks. But how could I possibly refuse that kind of request from my mother? As soon as I saw him, I knew it was only a matter of time.
To watch someone die that way was heartbreaking, excruciating, horrific. When the funeral was over, the dust had settled, and I was alone again with my thoughts, the persistent anxiety and sense of impending doom returned and I have not been able to shake it. I have suffered from a lifelong anxiety and panic disorder, and I can trace the symptoms back to the age of seven. I have even written a 350-page book about it because I became so frustrated with psychiatrists that I began to do my own research, and all that research and reflection turned into an (unpublished) memoir. In the past twenty years, I have received a minimum of fifteen official and unofficial diagnoses from Asperger’s Syndrome to Bipolar II Disorder – many of these diagnoses would be laughable if you knew me. Through happenstance, I ended up taking the only clinical assessment for Bipolar II Disorder four years after I was diagnosed. It was administered by Dr. Brian Tolliver, the chief bipolar researcher at the Medical University of South Carolina, to evaluate me as a potential subject for a research study. And I failed it, with flying colors. I simply have never met the criteria for a manic episode, so I was not allowed to participate in the research study. Still, I was only tested because a doctor wanted to assess me as a potential guinea pig – not out of concern for my well-being as a patient, not to confirm or appropriately diagnose me with any level of objectivity for my own sake.
By that time, I was on a cocktail of eight different medications in high dosages, including benzodiazepines (clonazepam) and zolpidem (Ambien) and SNRI antidepressants (Cymbalta), in addition to mood stabilizers and low dosages of atypical neuroleptics. From what I understand, I was on quadruple the federally suggested maximum dosage of zolpidem (20 milligrams) and double the federally suggested maximum dosage of clonazepam (8 milligrams). I had done enough research at this point that I decided to “unwind” my relationship with psychiatry. I remember performing a written inventory of these medications, looking up at my mother and informing her that I was not going to be able to untangle these issues outpatient. So I returned to the Medical University of South Carolina (M.U.S.C.) and showed the resident psychiatrist the list of medication I had been prescribed. He sat there stunned and slack-jawed for a few moments. Then he excused himself and returned with a colleague. They wanted me to enter the hospital right away, and I agreed, without hesitation. I think they were surprised when I did not resist and voluntarily entered the hospital on December 6, 2014.
Their strategy and treatment of the underlying issues, and the withdrawal syndrome that I received at the hands of the psychiatric team at M.U.S.C. still baffles me to this day. For some ungodly reason, they immediately dropped me off of the Cymbalta, and immediately switched me from clonazepam to Valium. I left the hospital one week later with a six-week taper from the Valium and a prescription for 10 milligrams of zolpidem. I followed their instructions to the letter, turning my Valium prescription over to my mother to ensure that I did not waver. She placed all my medications under lock and key. One week after I completed the taper, I was halfway through a cup of coffee when I had a panic attack and all the symptoms returned, irrevocably. My hands and feet went numb. A burning, tingling sensation overcame me and I became so irritable and frightened of everything that I simply could not focus or function in any way.
At first, the resident psychiatrist presiding over my case (clinically supervised by a psychiatric nurse for reasons I don’t understand) refused to believe me. He said that protracted withdrawal syndrome did not exist until I pressed him to look into the clinical literature. When I followed up with him, he sheepishly admitted that there was “some evidence” that it existed, and that I showed “some of the symptoms” but he would not put me back on benzodiazepines. I want to be absolutely clear on this issue: I never asked him to put me back on benzodiazepines. In fact, I was adamant that I did not want to go back on them. I told him that I “never wanted to see another benzo as long as I lived,” but I was also adamant that I needed humane treatment for the withdrawal, and I was not getting it. In fact, I was dismissed as a junkie trying to get back on these medications.
He told me it was impossible that I could be experiencing what I was experiencing. He told me I was “a baby whose bottle has been taken away.” He even told me it was all in my head! Of course it was all in my head – it is a deeply embedded neurological issue. For 3.5 months, I white-knuckled it through every day. I was so irritable and stewing in the darkest thoughts possible that I completely understand why some people commit suicide coming off these medications. But the worst symptom was this obsessive-compulsive fear of everything. I was scared to drive my car because I was irrationally afraid of getting into a car crash. I was afraid of walking down a flight of stairs because I just knew I would fall and break my neck. I had this weird, obsessive fear of bumping my head against the mantelpiece, so I walked a wide berth around the fireplace – those are just some examples of what I went through. Even some television commercials frightened me for a while. The image of someone parachuting from an airplane would make my stomach bottom out, the zero-gravity sensation of falling from a great height.
My doctor insisted that those symptoms (if I was telling the truth) could not be associated with withdrawal – they had to be symptoms of an underlying condition. If they were withdrawal symptoms, he reasoned, then the condition would improve over time, not become worse. I have since learned from legitimate sources that protracted withdrawal syndrome from benzodiazepines can last years, that it can intensify long before it abates, and that it can come and go – with some symptoms, such as irritability under stressful situations, lasting for years until they dissipate. I am beginning to think they can last a lifetime, if they have not already killed me by predisposing me to the same kind of dementia-related early demise that just killed my father last week.
During this time – at the peak of withdrawal – I canceled four to six months of refills of clonazepam, zolpidem and Librium at two different pharmacies, though every brain cell was screaming at me not to cancel them. But I somehow found the strength to do it. Hardly the actions of the hardcore junkie that my psychiatrist had accused me of being. He didn’t use this word, but he clearly implied that I was malingering. For three and a half months, I stayed within the M.U.S.C. network to ensure that no one could accuse me of doctor shopping, and I only used one pharmacy for the same reason; but as a result, I also never received any help. Inevitably, they contacted my psychiatrist and he denied me any assistance, and of course his peers were not going to contradict him. He did finally try Prozac, but it only made the symptoms worse after three weeks. Then they tried Zoloft and the results were the same, I became even more agitated after three to four weeks.
As a last resort, he put me on a low dosage of the antipsychotic Zyprexa. I was told that the Zyprexa would “knock me out and treat the anxiety.” I was also advised that it would increase my appetite and I would gain a lot of weight but that I “needed to put aside my body issues for a while.” I have been athletic all my life – rigorous aerobic exercise was how I always dealt with my anxiety problems, so lethargy and weight gain and the “stupidity” that you feel on antipsychotics as they diminish your frontal lobe activity was like trading one source of depression for another. In my twenty years of experience as a patient, as far as psychiatry is concerned, the cure is always worse than the disease.
I was willing to put aside those concerns for a while if, on the long term, I could get through the intense, protracted benzodiazepine withdrawal syndrome. But it just did not work. The Zyprexa did not put me to sleep, and it did not take away the intense anxiety and panic that plagued me all the time, everywhere I went. One day, it was so intense that all I could do was pace up and down. I tried to take my dog for a walk to distract myself, but I couldn’t even make it twenty-five feet. I had reached my breaking point. Something had to change, and it had to change that day. So I talked my mother (who was handling all my medications at the time) into letting me have a zolpidem and then driving me to the M.U.S.C. emergency room. Again, I refused to leave the M.U.S.C. network so that no one could accuse me of doctor shopping or any kind of criminal dishonesty.
When I arrived, and after the zolpidem kicked in, I was less agitated, but I explained to them why I’d come there and that I needed to go back into the hospital again. Instead of admitting me, I was referred to an inpatient program at M.U.S.C. for patients over 40 years old with manic depression and schizophrenia (I have never received either diagnosis). The emergency room staff told me that the staff at this program knew I was coming and that I was already registered – I only needed to show up the next morning to get started. When I arrived the next morning, the program staff had no idea who I was, and it took another week to get me enrolled in the program. I went for one day and it became obvious to both me and the clinical staff present that I did not belong there and my issues were clearly related to withdrawal from benzodiazepines. When I did my intake session with the psychiatric nurse in charge of the program, she said to me (and I am not paraphrasing much here):
“I do not understand why they didn’t admit you back into detox right away.”
That was the final straw. I went back to my old practice and found a new psychiatric nurse who recognized the problem right away. She offered to put me back on clonazepam, but I refused. I asked her to put me back on Valium, because I was told by the psychiatrists at M.U.S.C. that it’s the oldest and weakest of the benzodiazepines and the easiest to taper. Though I have been free of clonazepam and SNRI antidepressants for more than one year now, I am still struggling to get off of the Valium and the Ambien. I am committed to zero alcohol consumption and have been sober most of the time for the last ten years, though I have not been perfect. Of course no doctor – psychiatrist or otherwise – informed me that alcohol consumption was problematic with benzodiazepines until years after I had started taking them. When I was first prescribed Xanax in the early nineties, I did not drink that much. Then I discovered the combined effect of white wine and Xanax, and slowly alcohol became another issue, though I have largely cleaned up my act in that respect. In the early nineties, when I told my first doctor that I was drinking wine and taking Xanax, his response was: “When I go home tonight, I will have my three vodka martinis. It’s okay, you just don’t want to get shit-faced.” How could I make this stuff up?
There is much more to the story, but since we buried my father on Saturday, I am terrified and on the verge of panic all the time. It seems to me – based on what I have read on this blog – that there is very little hope of complete recovery and I am destined to the same fate.
I don’t trust the APA either. They receive a significant chunk of their budget from the pharmaceutical companies and they have a vested interest in protecting their members from widespread liability. I may not have an MD but I do have an MBA in Finance, and I worked in the financial investments industry. Large corporations and their trade associations lie all the time to protect the bottom line.
It’s the American way.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.