This question runs through the head of so many who have experienced benzodiazepine withdrawal: “Why? Why doesn’t my doctor/provider know what is happening to me? Why does he/she disregard that I do know what is happening to me? Why do they refuse to confirm my concerns or support me?” Benzodiazepine tolerance and withdrawal are not new. Many have endured and more will in the future. 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.
I am a 48-year-old wife, mother, grandmother and nurse practitioner. I am now 26 months off of 0.5 mg of Klonipin that I took as prescribed, once daily, for 15 years. I was prescribed this medication to treat my insomnia which was a side effect of the Cymbalta I was taking at the time (which I have since discontinued). In 2015 I began having symptoms of heightened anxiety/agitation, terrible intrusive thoughts, fatigue, palpitations, feeling like the skin on my arms was burning, gastrointestinal disturbance, shakiness and dizziness. I went to my providers (I was seeing a family doctor and an endocrinologist) who, after many tests, said my symptoms were likely because of my anxiety and that I should increase the dose of the Klonipin. I refused. I did not want to “play that game” in which I would have to keep increasing my dose to get the same effect. I knew that the long-term effects could be damaging; I knew, as well, that I would eventually hit a maximum dose… and then what? It was then that I decided I wanted off of this drug.
My primary doctor disregarded my concerns, saying that this drug was “tame” and “such a low dose” that I shouldn’t have any concern and that I would “likely need it for life” because of my “chemical imbalance.” At that time I was also seeing a psychiatrist, who was actually the prescriber, so I went to her and discussed my concerns. She was supportive of the fact that I wanted to stop but her suggestion for tapering was quite fast. By now, I had been reading the Ashton Manual (which my doctors had never heard of) so I suggested to my psychiatrist that I cross over to Valium — which, with her approval, I did, but I went from 0.5 mg of Klonipin (the equivalent of 10 mg of Valium) to 2 mg of Valium overnight.
It was much too big and too fast of a cut and I immediately went into a tailspin. My symptoms were as follows: severe agitation/anxiety, intrusive thoughts, dizziness, heart palpitations/pounding, nausea/vomiting, severe cold intolerance, a burning sensation in my arms along with an icy sensation in my bones, inner restlessness, shallow breathing, urinary frequency, and probably more. The thoughts that were entering my mind were frightening so I went to the E.R. They performed multiple lab tests and an abdominal CT, all which were normal. So what did they do? They gave me Ativan. The LAST thing I needed. The way they treated me was very unprofessional and uncaring, as if I were an irresponsible addict. But, believe me, more drugs were the last thing I wanted. I just wanted help. Help to get through it WITHOUT being loaded up on drugs.
I couldn’t do life anymore. I couldn’t work, be a wife, mom or grandmother. I couldn’t cook, clean, nothing. I was scared. Not one doctor knew how to get me through this and I was desperate. All I wanted was my life back, but I felt trapped. So I reached out to a detox center. They “promised” they could help me get off of the benzodiazepine and get my life back. I believed them, so I went. They tapered me off of the Valium over three weeks. In the detox center I was offered drug after drug (Gabapentin, Baclofen, Trazadone, Seroquel, Visteral, Propranolol, etc.) to “help” with the symptoms I was continuing to endure. I even asked the addiction psychiatrist at the detox center whether the other medications that were supposedly meant to help might be causing further problems. His answer was: “I don’t know, just stop those medications then.” Basically, he didn’t know. Who knew? Does anyone know?
I came home a month later and attempted to get back into the workforce, but failed. The symptoms continued and my providers kept saying, “It’s reemergence of your anxiety” and “It cannot be withdrawal, the drug is out of your system.” But it WAS still withdrawal. There are many studies out there that confirm that withdrawal symptoms can continue after the drug is out of the system. My body has downregulated the gaba receptors after many years of taking Klonipin, so I basically have no working receptors, and glutamate (the excitatory neurotransmitter) is dominant, for now. Why don’t you know this, doctor? Why are you making me feel as though I am crazy?
The symptoms drove me to have thousands of dollars in tests. I was admitted to Duke to rule out adrenal failure. All tests were negative, of course, so what happened while I was inpatient? They brought in psych to evaluate me. What did they do? They put me on yet another psych drug, Prozac, which made me much worse, so I stopped. I was admitted to two separate psychiatric hospitals for suicidal ideation because I could not function and I did not know how long it would take to heal. My family depends on me and I couldn’t be there for them. All the psychiatrists at these hospitals wanted to do was stack more medications on me. It’s like they scanned down a menu of medications to see “what we could try.” I went to rehab, where staff members promised they could help me. They couldn’t. I saw two naturopaths, both of whom wanted to pile supplements on me, none of which helped.
No one knew how to help. Not one. Why? Why didn’t I know this could happen to me? I mean, I’m medically educated, right? But I didn’t know, and neither did my doctors.
I lost faith in the medical system, but I gained faith in my Holy Father. I had to keep fighting and maintain patience. I did. Am I healed? I feel that I am healed from benzo withdrawal, but I still have to taper off the “other” drugs that the detox center started me on, which I am working on now. I feel this is an endless cycle of withdrawing from drugs that, if I had known then what I know now, I would have never started.
So why don’t doctors know? When doctors and mid-level providers are in the midst of their education, prior to practicing, the main focus is diagnosing and treating. Our education begins with learning the basics of anatomy and physiology, biochemistry and microbiology. So basically we are learning about the human body and how it works, down to the cell. This is where the infamous gross anatomy class comes in, which entails dissecting a human body. All of this is taught over a few courses over a few semesters at the beginning of our college career. Later on in our medical education, the knowledge expands to pathophysiology — basically, what happens physically/chemically to the body when things go wrong. In medical school, they break the education down into systems (i.e. neurology, respiratory, cardiovascular) with each system covered over a number of weeks. Students are given one, maybe two, semesters of pharmacology class (typically 15 weeks each semester, meeting two or three days a week for 1-2 hours). So as you can see, in-class learning is minimal for what is needed to know out in the real world. In the later semesters, learning continues in the clinical setting (i.e. residency, etc.). It is nearly impossible to learn everything about every condition through our medical education. Over the years of education we are formally tested through exams as well as hands-on demonstration of our knowledge, and, finally, through a board certifying exam. However, much of the learning is through our continuing education, depending on new practice guidelines, and is basically a “learn as you go” process.
During our education we are taught that, based on a patient’s history of present illness (what the patient tells us their symptoms are) and physical (what we see and lab or radiological testing), we should come up with a list of differential diagnoses (or list of possible diagnoses) and based on the most clear possible diagnosis, treat for that condition. However, if the treatment given does not improve the symptoms, we start going down the list of differentials we compiled. For example, here is a case study:
Mrs. Jones is a 45 year old female who comes into your office with complaints of the
following: dizziness, nausea, gnawing abdominal pain, increased agitation/anxiety,
palpitations, shakiness, cold intolerance, fatigue and a 10 lb weight loss over the last
month. Patient denies headache, loss of consciousness, fever, cough, wheezing, shortness of breath, chest pain, diarrhea, constipation, blood in stool or extremity swelling/weakness.
Past medical history:
Hypothyroidism, Premenstrual dysphoric disorder, anxiety
Levothyroxine 75 mcq once daily, Clonazepam 0.5 mg once daily,
Monthly estrogen shots.
Has been taking levothyroxine for 20 years and Clonazepam 15 years.
Estrogen replacement started after hysterectomy
Septoplasty (septum repair), Tubal Ligation, Tonsillectomy, Total Hysterectomy
Non-smoker, denies alcohol or illicit drug use
Married, 3 adult children
Works in healthcare
Physical (by systems):
Mildly anxious female, alert and oriented with normal BMI
Respiratory: Lungs clear, respiratory effort unlabored
CV: Heart rate/rhythm normal, no murmurs
Musculoskeletal: Normal strength and range of motion of all extremities
GI: Mild epigastric tenderness on palpation, abdomen non distended, soft, liver not enlarged. Bowel sounds normal
Neuro: Cranial nerves, balance and pulses normal
Skin: Color normal, no lesions, warm, dry, intact
Based on the history and physical, what is your possible diagnosis? Breaking the symptoms down into systems, the diagnosis could be cardiac (palpitations, dizziness, fatigue), neurological (extremity burning, dizziness, anxiety, agitation), endocrine (fatigue, dizziness, weight loss, cold intolerance, anxiety/agitation), GI (nausea, abdominal pain, weight loss), psychiatric (increased anxiety/agitation, weight loss, palpitations, GI disturbance, fatigue) or medication-induced (too much hormone replacement). So from this list, there are a multitude of diagnoses that could be given from the symptoms of this patient. The next step for the provider is to start from the most likely diagnoses and work through the differential list. In order to do so, he/she will need to start out with testing (i.e. laboratory, radiological, etc.). If he/she is unable to do so, then there is one of two possibilities that you will likely run across: 1) You have anxiety/depression, so let’s start you on some medication to help you, or 2) You will be referred to a specialist (i.e. cardiology, neurology, endocrinology, etc.).
This patient’s tests all come back normal. So, what could it be? The most likely diagnosis will be reemergence of her anxiety. So what is the treatment? You guessed it: medications. Either increase the clonazepam or add another psychiatric medication (SSRI, SNRI, etc.).
Now here is the big question: Why didn’t the provider even have a clue that the patient’s symptoms could be from the reduction of the clonazepam? Four words: they did not know.
Back to pharmacology, the class where our future providers learn about the medications they will be prescribing. In this class, the primary focus is on pharmacokinetics (what the body does to the drug) and pharmacodynamics (what the drug does to the body). This is based on what I will call a “control” person. Although the pharmacodynamics of a drug will likely be the same or similar for all of us, the pharmacokinetics will not. That is because we are all biochemically different. Our DNA, illnesses we may have, environmental chemicals we are exposed to as we grow up, and so forth, all contribute to how our bodies react to the medications we ingest or inject.
Additionally, in this one — maybe two — semester course only the most common medications are covered, which is a fraction of all existing medications. According to the FDA’s Orange Book, which lists approved drug products with therapeutic equivalence evaluations, page 9 of 64 of the Cumulative Supplement for March 2018 shows a total of 19,294 prescription drug products as of December 2017. It is simply impossible to learn about all of the FDA approved medications and their interactions with each other in one or two semesters.For example, on Georgetown University School of Medicine’s pharmacology department webpage, description of the class is written as follows,
“The second year’s course in pharmacology introduces the student to the scientific basis for the use of certain drugs in medical practice and the essential principles of clinical pharmacology. Since it is impossible to learn about each of the several thousand prescription drugs currently available, the course concentrates on selected prototype drugs and general pharmacologic principles that govern the action of all drugs in the body.” [emphasis mine]
After these classes, the future medical provider’s education is in the clinical setting, or “learn as you go” and mandatory annual medical continuing education (CME); however, many states do not have mandatory specific pharmacology CME requirements. The number of CME hours required by state varies but averages only between 20-50 hours annually.
So having been on the inside as a nurse practitioner, as well as on the outside, I can see why benzo withdrawal sufferers go years without being diagnosed properly. Bottom line is that there is a lack of education. It is 100% impossible for any one doctor or provider to know the pharmacokinetics (for YOUR biochemical makeup) and the pharmacodynamics, potential interactions, and potential adverse reactions of every medication available and prescribed.
Where am I now? I have slowly eased back into working again. I could not physically or mentally help patients during the worst of my withdrawal, but now that more than two years have passed, I am ready. Since I am basically a new provider for the patients I see, I am not prescribing benzodiazepines; however, I am helping with weaning. I am hoping and praying that I am contributing to the increase in education of the ramifications of long-term prescribing and the necessity of a slow taper, as well as the reduction in prescribing in our medical offices.
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.
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