Do Support Groups Help During a Benzodiazepine Taper? Where Patients Find Support

Do support groups help during a benzodiazepine taper?

Yes, for many people they do. A benzodiazepine taper lasts months, sometimes longer than a year, and the symptoms along the way are hard to explain to anyone who has not felt them. People who have been through it offer two things that are hard to find elsewhere. They believe the symptoms are real, and they know the practical details of living through a slow taper.

The person searching for a support group is usually someone who took alprazolam (Xanax), clonazepam (Klonopin), lorazepam (Ativan), or diazepam (Valium) exactly as prescribed. The United States Food and Drug Administration (FDA), in its 2020 boxed warning update for benzodiazepines, stated that physical dependence can occur when these medications are taken steadily for several days to weeks, even as prescribed. Physical dependence is not addiction.

That distinction decides what kind of support fits. A person whose body has adapted to a prescribed medication does not need a program for stopping drug use. In fact, twelve-step meetings were built for addiction, and they are not medical care.

What helps is simpler. It is the company of people who understand a slow taper, a family that knows what is happening, and a prescriber who will not rush. So, where does a patient find each of those?

What does peer support give a patient that a medical visit cannot?

The first thing is validation. Withdrawal can bring burning skin, inner trembling, a feeling of unreality, and nights with almost no sleep. Friends, and sometimes doctors, doubt that a prescribed medication could cause all of that. Hearing another person describe the same symptom, and say that it faded, is a different kind of relief.

The second thing is practical experience. People who are further along know how they kept a symptom diary, how they explained the taper at work, and what the good stretches and the bad ones, often called windows and waves, feel like from the inside. That knowledge is rarely written down anywhere else.

Professor C. Heather Ashton addressed this in Chapter II of the Ashton Manual. She advised arranging adequate psychological support before starting, and she wrote that it could come from a spouse, a partner, family, or a close friend. She added that voluntary support groups “can be extremely helpful,” because they are usually run by people who have been through withdrawal and understand the time and patience it takes.

There is also the matter of hours. A medical visit is short, and a taper is long. A peer community is there at three in the morning, when the office is closed.

A forum is not medical supervision.

While a peer community is good company, it is not a prescriber. The members are patients. Nobody on a forum has examined the person asking the question, and nobody there knows that person’s other medications or medical history.

Schedules vary, and they should. Another member’s taper plan is like another person’s eyeglasses. It was fitted to one person, to that person’s medication, dose, years of use, and nervous system. On someone else, it can make things worse.

Unfortunately, misinformation circulates as well. Advice to make a large cut, to skip doses, or to add something new can arrive with great confidence from a stranger. Any such change belongs in a conversation with the prescriber first.

Frightening stories are part of the picture too. Professor Ashton cautioned that people who have had a bad experience can sometimes frighten others by dwelling on their own symptoms, and she told readers not to be misled into fearing that they will get every symptom the others describe. Everyone is different.

Encouragement is not supervision either. A group can cheer a person through a hard week. Yet, it cannot judge whether the last reduction was too large or whether a symptom needs a medical evaluation. A fast taper is not a sign of strength, and it raises the risk of severe withdrawal and of symptoms that linger.

What are BenzoBuddies and the Benzodiazepine Information Coalition?

BenzoBuddies, at benzobuddies.org, is a peer forum for people who are tapering off of a benzodiazepine, and it has been online for more than twenty years. Members post their taper plans and get feedback from others who have done the same. The forum has boards for support during withdrawal, for the months after the last dose, and for success stories.

Still, it is a community of patients, and nothing posted there is medical advice. There is more in the article on BenzoBuddies and support during benzodiazepine tapering.

The Benzodiazepine Information Coalition, at benzoinfo.com, is a different kind of resource. It is a nonprofit formed by patients and medical professionals, and it is not a forum. Its work is education about the adverse effects that benzodiazepines can cause even when they are taken as prescribed, and it advocates informed consent and safe, gradual tapering. It does not seek a ban on these medications.

Dr. Mark Leeds, the physician behind this website, serves on its medical advisory board. A separate article describes the Benzodiazepine Information Coalition in more detail. Neither resource replaces the prescriber who manages the taper.

How does a patient talk to family and friends about a taper?

First, the time and place matter. The conversation goes better before the taper begins, in a quiet hour, than in the middle of a bad week.

Second, plain facts work best. A doctor prescribed the medication, the body adapted to it, and the dose will come down slowly, over months, under medical supervision. Third, it helps to hand the family something to read, such as the Ashton Manual or the FDA warning, so the explanation does not rest on the patient’s word alone.

Fourth, the request should be specific. A ride to an appointment, help with meals or child care on a bad day, and quiet in the evening are easier for a relative to give than support in general. Fifth, patience runs in both directions. Some relatives need time before they understand, and a few never do.

What the family most needs to hear is that withdrawal is a medical process. It is not a character test. Symptoms rise and fall without warning, a bad week does not mean the taper is failing, and urging a loved one to hurry up, or to just stop, does real harm.

Professor Ashton wrote that the ideal supporter is someone who understands benzodiazepine withdrawal or is prepared to read about it and learn. A relative who reads one chapter is already that person. There is more for relatives in the article on the impact of benzodiazepine withdrawal on family and friends.

What should a patient look for in a prescriber who tapers?

The specialty on the door matters less than the method. Does the prescriber know the Ashton Manual, is the plan a gradual taper over months, and who sets the pace?

Professor Ashton was direct about who should set the pace of a benzodiazepine taper. She wrote that the patient should be in control of the schedule and should not let a doctor impose a deadline, and that many people have taken a year or more to complete a withdrawal. The FDA’s 2020 update makes a matching point, that no standard tapering schedule is suitable for all patients.

A prescriber who works this way makes a small reduction and waits for the nervous system to settle before the next one. The reductions get smaller as the dose gets lower, which is the hyperbolic pattern described in the Maudsley Deprescribing Guidelines. Where it helps, the plan may include a crossover taper to diazepam, as the Ashton Manual describes.

Unfortunately, a bad stretch is part of most tapers. It is a reason to hold the dose or slow down, in a conversation with the prescriber, and it is never a reason to stop abruptly. Nor is it a reason to look for a fast “detox.”

In fact, safe discontinuation is a gradual, medically supervised taper over months. Professor Ashton observed that hospital withdrawal is usually fairly rapid, often takes control away from the patient, and is commonly followed by setbacks at home.

What if a person is going through a taper alone?

Many patients taper without much support nearby. They live alone, the family is far away, or the people around them do not believe that a prescribed medication could cause this. Isolation is a risk during withdrawal. It is not a strategy, and Chapter II of the Ashton Manual advises the opposite, which is to arrange support before starting.

The first rule is to keep the medication and keep the schedule. Throwing away the remaining tablets to force the issue is dangerous. The FDA warns that stopping a benzodiazepine abruptly, or reducing the dose too quickly, can cause withdrawal reactions, including seizures, that can be life-threatening.

Structure does some of the work that company would do. A regular time to get up, regular meals, a short walk in daylight, and the same bedtime each night in a dark, quiet room give the day a shape. None of this treats withdrawal, and what helps varies from person to person. It makes the hours easier to get through.

Still, contact matters, even in small amounts. One phone call a day, a message to a friend, or an hour on a forum such as BenzoBuddies keeps a person connected. It also helps to tell one trusted person where the taper stands, including the current dose, the date of the next reduction, and the prescriber’s name.

Some situations cannot wait. A seizure or any other medical emergency is a reason to call 911. Anyone with thoughts of suicide can call or text 988, the Suicide and Crisis Lifeline, at any hour.

Telling the story helps the next person.

Many people who finish a taper go back to answer the questions of those who are just starting. That is how peer support keeps going. A newcomer reads that a symptom faded for someone else, and a hard week becomes easier to bear.

Speaking openly also wears down stigma. Each plain account of a prescribed medication, a body that adapted, and a slow taper corrects the belief that withdrawal means a person did something wrong. Of course, nobody owes the public a story.

A taper is slow work, and most of it happens at home, between appointments. Fortunately, it does not have to happen in silence. In most cases, the nervous system heals with time, and the time passes more easily among people who understand.

Dr. Leeds is an osteopathic physician and deprescribing specialist in Fort Lauderdale, and his practice provides medically supervised benzodiazepine and z-drug tapering for patients in Florida. He works from the Ashton Manual and the Maudsley Deprescribing Guidelines, and the pace of each taper is set together with the patient. The practice does not run a support group, and no patient is required to join one.

Peer support and medical supervision do different jobs, and a patient is better served by both. Dr. Leeds’ practice provides the medical side, which is a taper plan built for one person and adjusted along the way. Contact Dr. Leeds to ask about a slow, medically supervised taper in Florida.

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.