How can doctors learn more about BIND and how to help patients with benzodiazepine tapering and post acute withdrawal syndrome?

BIND stands for benzodiazepine-induced neurological dysfunction. Some people have referred to this condition as toxic encephalopathy (TE), which is an accurate description, but BIND is a more specific term, describing TE caused by benzodiazepines.

To put it simply, benzodiazepines cause a form of brain damage in some cases, when used for extended periods. This damage is microscopic, and not detectable by any type of scan. We identify the damage by the patient’s history.

When a person takes a benzo, such as Klonopin, Xanax, Ativan, or Valium, for many years, or even several months in some cases, they may develop unusual symptoms that cannot be otherwise explained. A person might get symptoms while taking the benzodiazepine, during the tapering process, when they are cutting back, or after they have fully stopped taking the drug.

BIND symptoms are more likely if a person quits a benzo cold turkey, or if they are tapered too quickly. For example, many drug rehabs and drug detoxes, more geared for dealing with alcohol, heroin and cocaine addiction, attempt to detox patients off of benzos in a week or two.

Fast tapering can be disastrous for some people, causing them to suffer from post acute withdrawal symptoms for many months, or even many years. Addiction treatment programs are not prepared to properly detox a person off of benzodiazepines.

Does a doctor have to be a psychiatrist to work with BIND patients?

Many patients with BIND blame their psychiatrist for their situation. They refer to their physical withdrawal symptoms as being an iatrogenic injury, or an injury caused by a doctor, hospital, or the healthcare system.

Understandably, they have some anger and resentment aimed at the prescribing psychiatrist, and possibly at doctors in general. They are angry that the doctor did not provide adequate informed consent when prescribing.

If they had known all the risks of taking the benzodiazepine, especially long-term, they might have refused it from the beginning. Informed consent is a central topic in the film, Medicating Normal, which any doctor interested in working with BIND patients should watch.

So, not only does a BIND doctor not have to be a psychiatrist, it could be a beneficial the patient-physician relationship to not be a psychiatrist. Unfortunately, the field of psychiatry has built a level of distrust in the benzo-injured community, due to excessive reliance on this often toxic class of psych drugs.

Of course, there are psychiatrists who are doing their part in helping patients to safely taper off of benzos, using the Ashton Manual protocol, or a similar gradual tapering method. Some enlightened psychiatrists have realized that many psych drugs are potentially toxic, and they have either minimized, or eliminated prescribing of these drugs.

Should a doctor do a residency or fellowship to gain experience and credentials for treating BIND?

Someday, there may be formal training for BIND and other forms of iatrogenic toxic encephalopathy. For now, doctors can best learn about protracted symptoms from authoritative and respected communities dedicated to educating doctors and supporting people with acute benzodiazepine withdrawal symptoms or protracted withdrawal symptoms.

For example, there is the Benzodiazepine Information Coalition, an organization dedicated to educating healthcare professionals, patients, and patient loved ones about issues related to benzodiazepine use. BIC has a great deal to teach doctors new to the field, but there are a few important issues to note.

First, benzo dependence is not drug addiction. Doctors, patients, and patient family members must understand that this is a physical reaction to the drug occurring in the central nervous system. In nearly all cases, there is no benzodiazepine addiction.

Treating a person suffering from protracted withdrawal as having a substance abuse problem is insulting and offensive. Many people who suffer from protracted withdrawal syndromes consider this treatment to be a form of gaslighting.

Similarly, the symptoms of drug withdrawal are not psychological symptoms; they are physical symptoms caused by long-term changes in the brain that have led to benzodiazepine physical dependence and a toxic reaction to the benzodiazepine. BIND is not something the patient is making up or imagining.

Are there other organizations that can help educate doctors about BIND?

There is also a group named Benzo Buddies. Another is Benzo Warriors. Benzo Warriors hosts a lecture series by healthcare professionals about BIND and related topics.

There are also a variety of support groups on Facebook. These groups are primarily for community support for people going through benzodiazepine tapering or withdrawal.

If doctors decide to join these groups to learn more about the BIND experience, it would be advisable to follow conversations and learn without engaging too much, if at all. Support groups are not appropriate forums for doctors to promote their practices or attempt to become the community expert, especially in groups where many members have a serious distrust of doctors.

While online support groups do have some disturbing comments and conversations, they are, on the whole, useful sources of information. One way to make use of a Facebook group is to search the group for mention of a specific keyword.

For example, if you are a doctor who wants to learn more about “benzo belly,” you can search the group for this term and find discussions about how the condition manifests and how individuals in the group deal with it.

What are some important symptoms related to protracted withdrawal that doctors should know about?

Akathisia is a movement disorder that can occur after long-term Benzo use. Fortunately, it is rare. The risk of developing akathisia is likely higher for people who quit benzos cold turkey or by tapering too quickly.

People who suffer from akathisia describe it as an internal pain where they want to rip their skin away and crawl out of it. They cannot sit still and often pace around the room for hours at a time.

A much more common withdrawal symptom is benzo belly, where the patient has abdominal bloating, discomfort and distress. Additionally, many patients suffer from insomnia, anxiety, fatigue, and irritability.

Histamine sensitivity, sometimes referred to as MCAS (mast cell activation syndrome), is a rare symptom that doctors should be prepared for. It presents as an allergy, but it is not allergy, and traditional allergy treatments often do not help.

Some patients suffer from depersonalization and derealization, where they feel disconnected from reality and from their own bodies. DP/DR is a difficult and disturbing condition that is highly unpleasant to live with.

In addition to the wide variety of symptoms described here, and many others, patients often deal with family members who are not supportive. And even when loved ones are supportive, the patient feels guilt over being a burden to them.

How can a doctor help patients with BIND?

First, it is important to understand that prescribing more medication is usually not the answer. There are medications and supplements that will help some patients with certain symptoms, but often patients will have adverse reactions to medications that the doctor thought would have helped.

Patients with BIND have very sensitive nervous systems, and they may react in unexpected ways to meds and supplements. Whenever there is a non-medication solution, that should be tried first.

Sometimes patients will ask for medications, but meds are not advisable. When in doubt, it is best to err on the side of not using medications, especially when there is a high degree of uncertainty that the medication will help.

Listening is an important skill for a BIND doctor to have. Patients want to discuss what happened to them and why it happened. They want to explain their medical history in detail, in hopes that something will stand out to the doctor as being significant.

BIND patients do not respond well to cookie-cutter treatment plans. Each patient is unique in their experience, and it is critical to listen carefully, taking everything into account before discussing any treatment plans.
Doctors should always remember informed consent.

Patients who have been injured by benzodiazepines are sensitive to the risk of taking more medications. While they may be agreeable to trying a new medication to see if it helps, they want to know what risks they are taking.

It is best to be clear, open, and honest about the risks of taking any medication going forward. Doctors who have not recently reviewed the literature for a prescription drug that they are considering prescribing should go back and re-read it.

In some cases, the doctor may find that, on further review, they do not want to prescribe a drug that they initially thought would be a good idea. As doctors, we must be aware of where our education in pharmacology comes from. Big Pharma is not a reliable source for our education.

A patient who has been informed of the significant risks of taking a medication may still choose to take it, but at least they are aware of the risks, possible benefits, and alternatives. Informed consent should be verbal, and it can also be in writing.

Treating BIND means always being open-minded and always prepared to learn.

Doctors who want to help BIND patients must be prepared for a life-long learning experience. Just when the doctor thought they were on the path to mastering BIND, they realize that they have only just begun.

Every patient can teach the doctor something new about the BIND experience and possibly something new about treatments that might work or might be detrimental. In fact, many patients want to help doctors to learn more about how to help other patients with BIND.

BIND patients are often intelligent and very well-informed about their condition. They understand that most doctors do not understand BIND as well as they do.

Becoming a BIND doctor is a humbling experience, best suited to the open-minded doctor who is prepared to listen to their patients and to continue learning more about BIND and the many ways it can present. The BIND community will welcome new doctors who have decided to make the effort to learn about this complex condition to be of service in helping BIND patients confronted with benzo toxicity and protracted benzo withdrawal.