How Do You Find Care for Benzodiazepine Dependence When Your Doctor Does Not Recognize It?

Why do so many doctors miss benzodiazepine dependence?

Benzodiazepine dependence is an iatrogenic, or doctor-caused, condition. A patient takes a medication exactly as prescribed, and over weeks to months the brain adapts to it. When the dose is lowered or a refill runs late, that adaptation shows itself as withdrawal.

The 2020 boxed-warning update from the United States Food and Drug Administration (FDA) says it plainly: physical dependence can develop within days to weeks of steady use, even as prescribed, and stopping abruptly or cutting the dose too quickly can cause withdrawal reactions, including seizures, that can be life-threatening. Call emergency services for a seizure or any other medical emergency. Yet, many prescribers still read that warning as a footnote.

Unfortunately, the doctor who wrote the prescription is often the last to recognize what it has done. Dr. Mark Leeds, an osteopathic physician and deprescribing specialist in Fort Lauderdale, Florida, hears the same story from patients across the state: the new symptoms were the old anxiety coming back, the dose was too small to matter, or they must be misusing the drug. None of those answers is a diagnosis.

Physical dependence is not addiction. In fact, most people who become dependent on a benzodiazepine never took more than they were told to, never chased the drug for its effect, and never lost control of their use. They have a medical condition caused by a medication, and it calls for medical treatment, not a lecture. So, how does a patient get that treatment from a system that rarely offers it?

Withdrawal symptoms are not weakness, and they are not the old illness coming back.

Benzodiazepine withdrawal can look like almost anything. Anxiety, insomnia, and a raw sensitivity to light and sound are common, and so are muscle pain and stomach trouble. Because the symptoms overlap with the reasons the drug was started, they are easily mistaken for the original illness. Dr. Leeds covers the full range in what every patient should know about benzodiazepine withdrawal.

Professor C. Heather Ashton, in Chapter III of the Ashton Manual, describes a minority of long-term users whose symptoms persist long after the last dose, a protracted withdrawal syndrome. Many now call it benzodiazepine-induced neurological dysfunction (BIND). Professor Ashton’s observation was that the symptoms almost always keep declining, though it can take a long time.

A wave of symptoms months into a taper is not weakness, and it is not a slip back into anything. It is the nervous system healing on its own schedule. The mistake to avoid is treating each new symptom as a new disease, because that is where polypharmacy begins.

Polypharmacy makes a taper harder, not easier.

Patients who bring withdrawal symptoms to a doctor who does not recognize withdrawal often leave with a second prescription. The insomnia gets a sleeping pill, the restlessness gets something else, and the low mood gets a third drug. Each one treats a symptom the benzodiazepine caused, and each can bring its own dependence, its own side effects, and its own taper.

Prescribed polypharmacy, meaning several prescriptions taken at once, is a common pattern among the patients Dr. Leeds sees. Dr. Leeds also helps patients taper other psychiatric medications, one drug at a time, in an order he and the patient agree on. He lays out the traps in polypharmacy and how to avoid it.

The first job, then, is to stop the pile from growing. That means finding a doctor who recognizes withdrawal for what it is, and knowing what you are entitled to ask for.

What does informed consent mean for a benzodiazepine prescription?

Many of Dr. Leeds’ patients were never told, at the first prescription, that the drug could make them dependent. Informed consent is not a signature on a clipboard, and it is not a way of making you comfortable with a recommendation.

Genuine consent starts with the risks: physical dependence, tolerance, and withdrawal, disclosed before the first dose. It includes the alternatives, and no medication at all is one of them. And, it includes an exit plan from day one: how long the drug is expected to be used and how you will come off of it.

Consent also means the right to decline, and the right to withdraw consent later without losing your doctor. It continues for as long as the prescription does. A doctor who bristles when a patient asks about stopping has not obtained consent, only silence.

Your rights do not end there. You are entitled to a copy of your medical records, and to a second opinion from any physician you choose, without asking permission. You are a partner in every decision about your treatment, and your preferences about pace and direction are not obstacles to the plan. They are the plan.

What should you ask a prescriber before trusting them with your taper?

Knowing the questions makes the search easier. How many benzodiazepine tapers has the doctor supervised? Does the doctor use the Ashton Manual and the Maudsley Deprescribing Guidelines? If a reduction proves too much, will the doctor hold at that dose for as long as it takes, or make the next step smaller?

A prescriber who understands this condition will not set a fixed end date, will not require a stay in a facility, and will not make attendance at support-group programs a condition of treatment. A short detox with a discharge date is the wrong plan, because safe discontinuation is a gradual taper over months, at home, with you setting the pace.

Ask, too, whether the doctor will switch you to diazepam when it helps. Chapter II of the Ashton Manual advises a crossover taper to a long-acting benzodiazepine such as diazepam, because its slow elimination lets the blood level fall smoothly instead of dropping between doses.

Finally, ask who decides the pace. The Manual’s answer is the patient: Professor Ashton wrote that you must be in control and must proceed at the pace that is comfortable for you. A doctor who agrees with that sentence is the doctor you are looking for.

What does a slow taper actually look like?

The shape matters more than any number. The dose comes down by a small step, the patient stays there until the nervous system settles, and then the next step is taken. The whole descent takes months, often a year or more, and Chapter II of the Manual says there is no need to hurry, because whether it takes six months, a year, or longer matters little to someone who has taken the drug for years.

The Maudsley Deprescribing Guidelines add a refinement called hyperbolic tapering, in which each reduction is a fraction of the current dose rather than of the starting dose, so the steps get smaller as the dose gets lower. Think of a staircase whose steps get shallower the closer you come to the ground floor. The last steps are the smallest.

This is the way Dr. Leeds runs a medically supervised benzodiazepine taper, following the Ashton Manual. He works out the next step with the patient, holds when the patient asks to hold, and makes the next step smaller when the last one proved too large. The milligrams belong in that conversation, not in an article.

What can you do when no prescriber will supervise a slow taper?

First, do not stop on your own. The Ashton Manual does note, in Chapter II, that people who took a low dose for a relatively short time can usually come off more quickly, but even there Dr. Leeds prefers a gradual taper, which is what the 2020 FDA label update asks of every prescriber.

Second, do not taper faster than the Manual’s pace just to get it over with. A fast self-directed taper carries risks of its own, seizures among them, and the Manual warns that over-rapid withdrawal may make protracted symptoms more likely. If despair sets in and you have thoughts of suicide, call or text 988, the Suicide and Crisis Lifeline, or call 911 or go to the nearest emergency room. Those thoughts are an emergency, not a character flaw.

Third, ask your current prescriber for less, not more. A doctor who will not design a taper will often agree to hold the current dose, to make the next step smaller, or to write the prescription in a form that allows smaller steps. Bring the Manual to the appointment, since a written protocol is easier for a reluctant prescriber to follow.

Fourth, when the answer is still no, look for a deprescribing-literate physician rather than a facility. In Florida, Dr. Leeds is one such physician: a patient whose prescriber will not slow down can consult him by telemedicine, and he can take over the prescribing and the pace. Fortunately, a stalled taper can usually be restarted at a speed the patient can live with.

Dr. Leeds’ practice in Fort Lauderdale offers one service: medically supervised benzodiazepine and z-drug tapering, by telemedicine throughout Florida, with one physician who lets the patient set the pace. There is no facility, no fixed timeline, and no group to attend. If your doctor does not recognize benzodiazepine dependence, or recognizes it and will not slow down, Contact Dr. Leeds.

This article is educational. It is not medical advice, and reading it does not create a doctor-patient relationship. Decisions about starting, continuing, or tapering any medication should be made with your own physician.