My story took time to uncover but eventually it became clear that my symptoms and the turn my life had taken were not so unusual, and although it was devastating, I was relieved. Despite the fact that this is not finished for me, I want to tell my story now. My experience has been like so many others. It’s not about just one of us. It’s about all our stories and how surviving prescribed benzodiazepine dependence and withdrawal syndrome can help set things straight and avoid further suffering. And how Mad in America and every other website, publication, and movement that people have created to tell their stories can help others recover and instigate improvement in the approaches healthcare professionals take when dealing with the neurological dysfunction that results from this vast iatrogenic injury.
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After various common treatments for an ongoing pain failed, I was prescribed a “baby dose” of diazepam for what a pain management doctor told me was muscular. Almost two years later, he believed the pain was from my sacroiliac joint and treated it as such. So for two years, I was regularly prescribed the same dose of diazepam for “muscle cramps.” I was not informed of any side effects or dependency issues. I asked. The reply was, “No es nada,” “Es muy poco,” “No pasa nada,” and my particular favorite, “No te preocupes (Don’t worry).” When I told my brother what I was taking, he said, “Why are you taking that? It’s addictive.” I asked the doctor about it and he reassured me that it was “fine” and again not to worry: “You don’t have the personality of an addict.”
Prescribing and taking a drug that is potentially addictive along with other serious side effects is something we should all be worried about. Initially, it did relieve some of the pain but I also complained about being tired and lethargic and was told to split the dose and have a cup of coffee. After about three weeks, I told the doctor I didn’t think it worked anymore. He said I should continue while doing physical therapy. I have been an active person and exercising was easy for me but now it wasn’t working. The exercise and the massage were making things worse. The original joint pain had been manageable before. I had to be careful about doing certain things but I was still active. Sometimes it was better. After starting the diazepam things deteriorated. It was hard to put my finger on it. It was insidious. It affected my relationships and my work. In retrospect, it’s easy to see what happened but when it was going on, I was looking to medical professionals for help. Yet I was told by all of them that taking diazepam regularly was fine. “Continue taking it.” When I didn’t go to the pain management doctor, my GP readily wrote the prescriptions. In fact, when I asked if I might possibly have nerve pain, he wrote an additional prescription for gabapentin and handed it to me. I filled it, read the information insert and returned it. It was only then that my pharmacist told me she had taken it and it had made her sick.
I spoke to the pain management doctor about every other doctor I saw and whether I should seek alternative therapies. He encouraged me to do what I thought was best. I was in my early 50s and it was like nothing I had experienced before. Over the following months, everything got progressively worse, until I was so sick, I asked for an emergency appointment. I wrote down my symptoms because I had no presence of mind to explain anything spontaneously. I decided to focus on being hypersensitive to, well, everything. He changed the medication from diazepam to bromazepam. A few days later, it was so difficult for me to walk that I barely made it into the office. He changed my prescription back to diazepam, and looking directly at my husband, wished us a happy holiday and ended with, “Relax and have some champagne!”
Having no other option at that point but to continue with him, I called that Sunday saying that I thought I was having an allergic reaction to the medicine. That’s when he told me to stop. My subsequent research revealed what tapering and the half-life of a drug were but it was too late. Five days later, I was taken to hospital by ambulance. They injected me with an opioid and the seizures started. When they subsided, I was admitted and someone came to wheel me upstairs but I was never informed about what had happened to me. For the next five days, I was alone in a private room. The nurses barely looked at me; they took my vitals without a word. Saying my experience in the hospital was terrifying or hellish doesn’t begin to describe the suffering I went through. A doctor came in to say I would be released and I questioned how I could be released without so much as a blood test. The next morning they took my blood. A different doctor appeared with an entourage of at least six colleagues to give me the results. I had nothing. Everything was great. I was super healthy. He asked if I was sleeping and I was. Then he said, “Don’t worry, here’s a prescription for sleeping pills.” I never filled the prescription and I keep it to remind myself how vigilant I have to be.
During that time, I did my best to search the internet on my phone. I finally came upon the Ashton Manual. From there I discovered information and stories I started to trust. The details could not have been sheer coincidence. Thousands of people were telling similar stories, with the same symptoms and the same rhetoric from their doctors. Some could describe how it felt. I read about tapering. Obviously that was not an option by then but I did learn about the dangers of abrupt cessation. Unfortunately, it had already done its damage and that damage had extended to my two boys and my husband. As for my family and friends, I could barely talk to them. I was measuring time by minutes to make it through the waves of pain: “It’s 10:52. At 11:30 things will be better.”
It took me three months to be capable of finding the proper help; to be able to write an email or make a call. Finally I made an appointment and before my first session, I dictated a message in which I described close to 50 symptoms. I had symptoms from head to toe. I explained in the message that early on, by then bedridden, I had asked the GP to come to my home to check my vitals. During the visit, I suddenly shivered violently all over. I’ll never forget it because he asked why I was doing that. Was I cold? No. Then why. I didn’t know. Then he said, “Tienes que pasar el mono” (a Spanish expression similar to “get the monkey off your back”). So he knew it was withdrawal. He said it would last a few days, maybe a couple of weeks. “You’ll be fine. Don’t worry.”
When it didn’t go away and when I described the emergence of other symptoms, he said he had never seen this before. He had never had a case like this. He was uninterested in the research I had done and my findings. I found stories, articles, blogs, videos, podcasts, books, publications and people dedicated to helping us through the torment. He didn’t review or consider any of it. I told him I was in touch with an expert in the UK. There was no question about what had happened and what was going on with me. She explained everything; I experienced tolerance and was dealing with withdrawal syndrome, my case was a textbook example. Yet he only focused on what he knew. He wasn’t worried.
After cold turkey, even eating was torture. It felt like my body wouldn’t let the food go down. I was 5 kilos down from 50; well below a healthy weight for my height. While taking the drug, I had told doctor after doctor about my steady weight loss. Some came up with excuses of why it was OK. I had always maintained a healthy and varied diet but now my digestive tract was so bad I tried to figure things out on my own, eventually eliminating foods one by one. Nothing helped. I saw a gastroenterologist and checked with an allergist. She rushed me out saying there was nothing wrong with me, refused to do any tests, and again the proverbial, “Don’t worry.” It was frustrating. Not one doctor associated the drug with my symptoms. It all became obvious too late.
Over the years, I have noticed that most doctors are skilled at dealing with patients but after a while reading their microexpressions isn’t hard, especially if you are divulging the same information. You end up hearing the same replies and explanations over and over. As I searched for a solution to my symptoms, it seemed to me that saying I was given a benzo for muscular pain didn’t matter. If the prescribing doctor thought I needed a benzo the others blindly went along. Even now, after all the information I have provided, they continue to convince themselves that the fact that I have prolonged physical symptoms is psychological and due to the trauma of cold turkey which was a result of following the doctor’s explicit instructions. So although I have never had any ‘mental illness’ issues, in their eyes it became one as a direct result of their ongoing treatment that caused tolerance and withdrawal symptoms.
Now, I tell them what I have discovered and offer information that has been published for their benefit. Their discomfort really kicks in when confronted with the fact that my issues were induced by a prescribed drug, taken as prescribed and discontinued as prescribed. Recently, a nurse gave me a lecture. He became so emphatic that I stopped trying to converse and ended up agreeing just to calm him. I wonder if they may sense, deep down, that something is seriously wrong but they can’t let themselves, their education, their careers, or their fellow professionals down by admitting it. I understand. They have studied long and worked hard to become medical professionals but they are also aware that historically the field has made some devastating mistakes. Prescribing drugs unnecessarily, incorrectly, and not informing the patient of side effects is one of them.
Not surprisingly, doctors’ visits are an unwelcome yet sometimes necessary event for me. I recently saw my GP for a checkup. Little did I know, the eight pages of blood tests he ordered would be used in his favor; proof that nothing is physically wrong with me and that withdrawal does not last this long. He didn’t do any other type of testing. His only explanation for my situation was that it is psychological. Yet I am fully aware of my situation and that the issue is not revealed with blood tests. My nervous system has to adapt and my brain has to recover from the injury caused by the benzodiazepine. I have forwarded information and publications and suggested getting in touch with an expert. Being that he is the GP and I have to go through him to see any other doctor or do any tests basically means that there is an inherent bias in my healthcare from now onward. There is no recourse or requital within the system. I discovered what had happened to me through research I did on the internet and confirmed it through sessions with specialists in the UK and USA. Between two of my closest friends I found that one had dealt with cold turkey withdrawal from an antidepressant that lasted long-term and the other tapered quickly experiencing milder symptoms for a few weeks. Stories popped up from the few friends I’m in touch with citing cases they knew or had heard about.
The number of specialists dedicated to helping people through this is limited, and often limited to individuals who have had to recover themselves. They are literally lifelines for some of us. The experience of those in the community is a valuable and reliable resource for medical professionals. The quantitative data is there.
I have temporary neurological dysfunction due to taking a benzodiazepine long-term as prescribed. The only known cure is time. My story is not finished but one day it will be. I’m not worried. I do as much as I am able to right now. For me, it’s all about preparedness; learning and working as much as I can to be ready for a new start. As of this moment, I still have to wait for certain things like traveling to visit Mom and the rest of my family, praying by my brother’s grave, and being a part of my son’s new life abroad. Due to this iatrogenic event some people have changed their opinion of me. It has affected every aspect of my life and marred my reputation. Yet meanwhile, I have become proud of the courage and endurance I have to get through this and thankful for the patience and compassion of the few, especially my husband, who have truly helped me and understand I have a lot to be proud of. They know who they are and who I am.
Someone close to me that wants to help said he was disappointed in me and insists my case is a “medical mystery yet to be unraveled.” There is no zebra here. We already know what’s going on. We need the medical community to catch up. They should be worried!
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.