Trigger warning. This post contains a list of symptoms and discusses suicide ideation and attempts.

Please do not read if you will be triggered by such information.

I wrote this for healthcare professionals, but I’ve been asked to share it with my benzo readers.

Read at your own risk for triggering. It is a lot to take in.

What is BIND?

I’ve been in the benzo community for twelve years, first as a benzo sufferer and then as a benzo withdrawal/BIND coach; putting to use my doctorate in psychology and post-doctorate education as well as anecdotal evidence from the thousands of benzo-damaged people I’ve talked with from around the world. I’ve witnessed many changes over the years in the type of support available for someone experiencing benzo withdrawal/BIND and increased activism and advocacy; however, there is still an enormous lack of education among healthcare professionals.

The way in which we speak about benzo withdrawal has changed over the years. For decades, all symptoms were referred to as benzo withdrawal, no matter how long after the cessation of the drug. This term created a great many eye rolls in the medical community as withdrawal only lasts for a few weeks. So what are we talking about when we say we are in benzo withdrawal a year, two, three, or more after off our benzo? We are talking about BIND, benzodiazepine-induced neurological dysfunction, a term coined by a group of professionals researching the impact of benzodiazepine prescription use that describes the lingering symptoms of benzodiazepine damage. A group associated with the Colorado Consortium and the Benzodiazepine Information Coalition led the way to the new terminology.

To understand BIND, one must understand how a benzodiazepine works. The drug acts on GABA receptors, the inhibitory system of the brain and nervous system. The action causes the GABA receptors to perform in ways it they are not designed to function, and over time, the receptors stop working; they down-regulate. This downregulation is a neuroadaptation. Without enough working GABA receptors, there is no balance between excitatory (glutamate) and inhibitory (GABA) action in the brain and nervous system. We are left with a hyper-excited nervous system that causes a cascade of uncomfortable, frightening, and possibly disabling symptoms. These symptoms are called BIND and can occur with prescribed intermittent benzo use and short-term daily use as well as long-term use.

BIND (Benzodiazepine-Induced Neurological Dysfunction) is defined by the researchers as “a constellation of symptoms, both physical and psychological, that result from neuroadaptation and/or neurotoxicity due to benzodiazepine exposure. These symptoms can persist for weeks, months, or even years after discontinuing the drug, significantly impacting an individual’s quality of life and ability to function.”

It is estimated that up to eighty percent of people who take benzodiazepines as prescribed will experience some degree of BIND symptoms, or put another way, neuroadaptation that causes symptoms.

Benzo Withdrawal Versus BIND

We use the term benzodiazepine withdrawal or benzo withdrawal to describe symptoms that occur while on the medication (tolerance withdrawal) and symptoms that arise in between doses (inter-dose withdrawal), as well as symptoms that occur until the drug has left (withdrawn from) the body. After the drug has withdrawn from the body, we refer to symptoms caused by neuroadaptation (damage done to the GABA receptors) as BIND. This new terminology better defines the constellation of symptoms that can persist for years after cessation of a benzodiazepine, as it takes time for the receptors to upregulate and become hardy once again.

BIND is sometimes referred to as Post-Acute Withdrawal Syndrome (PAWS), Persistent Withdrawal Syndrome (PWS), Benzodiazepine WIthdrawl Syndrome (BWS), Benzodiazepine Injury Syndrome, and Benzo Brain Injury. The benzo community still uses the term “benzo withdrawal,” but more professionals are using “benzo withdrawal/BIND” as a way to be more accurate.

Symptoms of BIND

BIND can have a devastating effect on a person’s life. There are over three hundred reported symptoms by people experiencing BIND. These symptoms can be broken down into two categories, physical and psychological. People report having dozens of symptoms in both categories.

Here is a list of possible symptoms. It is not an exhaustive list.

Physical symptoms include:

1. Abdominal/Gastro (abdominal and groin pain, appetite changes, benzo belly, constipation, diarrhea, distention, inflammation, nausea, pelvic floor dysfunction, urinary difficulties, weight changes))
2. Eyes, Ears, Nose, Mouth (blurred and double vision, swallowing difficulty, dry mouth, strange smells, metallic taste, oral thrush, sore eyes, light and sound sensitivities, tinnitus, mouth, and teeth pain)
3. Head and Neck (balance issues, dizziness, lightheadedness, migraines, neck pain, slurred speech, throat tightening)
4. Heart and Lungs (heart palpitation, over-breathing, chest pain, air hunger, gasping, flushing, sweating)
5. Muscular (aches and pains, electric shocks, fatigue, sprains, pulls and tears, stiffness, tremors, twitches, jerks and tics, weakness, convulsions, paralysis, seizure,s)
6. Nerve Sensations (altered sensations, hypersensitivity, numbness, paresthesia,  formication, skin rashes, itching, tingling, burning)
7. Immune and Endocrine (increased infections, lowered immune system, breast swelling/pain, menstrual difficulties, sexual dysfunction, loss of libido)

Psychological symptoms include:

1. Anxiety (panic, generalized anxiety, hypochondria, panic attacks, paranoia, phobias)
2. Behavioral (anger, irritability, rage, aggression, depression, obsessions, apathy, suicide ideation, personality changes, psychosis)
3. Cognitive (memory loss, easily overwhelmed, cognitive dysfunction, intrusive thoughts/memories, hypersensitivity, inability to concentrate)
4. Excitability (akathisia, agitation, jumpiness, restlessness, restless legs)
5. Perception (depersonalization, derealization, hallucinations, misperceptions, perceptual distortions)
6. Sleeping (insomnia, intrusive nightmares, toxic naps, sleep apnea, myoclonic jerks)
7. Social (agoraphobia, anthropophobia (fear of people),  haphephobia (fear of being touched), isolationism, emotional distancing)

Life Effects of BIND

The severity and duration of BIND symptoms can vary significantly between individuals, with some experiencing only mild discomfort while others suffer debilitating consequences that significantly impair their daily lives. To describe BIND as unbearable torture for some is accurate. The suffering cannot be truly understood by anyone who has not experienced it. The persistence of physical or psychological symptoms manifests in difficulty maintaining relationships, divorce, loss of child custody, jobs, careers, businesses, homes, educational opportunities, and financial hardships. BIND can negatively affect every aspect of one’s life. Living with BIND symptoms and their life effects can be so traumatic that some choose to end their lives.

A review of 17 studies confirmed benzodiazepine use could be associated with suicide risk. The exhaustion from the severity or persistence of BIND symptoms that can last for years and the hopelessness that comes from not knowing if or when symptoms will improve is an added risk.

Misconceptions In the Medical Community

There are many misconceptions about benzodiazepines in the medical community due to a lack of education. The FDA review that led to the September 2020 black box warning on benzodiazepines stated that there is a “Lack of awareness or misconceptions among prescribers about appropriate management of patients taking benzodiazepines.” Common misconceptions are: benzodiazepines are not addictive unless the patient has an addictive personality, addiction is the same thing as dependency, withdrawal or BIND symptoms are the re-emergence of pre-existing conditions or the emergence of a new psychiatric illness, one can taper off a benzodiazepine quickly or even stop cold turkey, withdrawal symptoms indicate more of the drug is needed, and that withdrawal symptom cannot last for more than a few days or weeks. (BIND can last for years.)  Most patients surveyed about their benzo experience reported that they were not informed of the dangers of taking a benzodiazepine.

The lack of education of medical professionals leads to misdiagnoses and mistreatment of people who are experiencing BIND, sometimes with fatal results. There are few avenues in the medical community for people in BIND to turn to for proper care and compassion.

Lack of Support From Friends and Family

If the medical community is ignorant about BIND, one can imagine how ignorant the general population is, leaving BIND sufferers to have to explain and educate their friends and family on how to best support them. Many loved ones don’t believe the BIND sufferer and parrot the erroneous information the doctor told them. Misunderstandings and resentments are common. BIND sufferers can feel guilt and shame over their inability to function in ways that add to the family or community. Their caregivers may experience compassion fatigue and burnout. Parents experiencing BIND have the added stress of worry that they are harming their children with their ability to function normally. It is incredibly difficult to navigate, sometimes for years, through a medical condition that isn’t well-known or understood.

Treatment and Management of BIND

There is no one-size-fits-all approach to treating BIND, as each individual’s experience is unique. However, several strategies may help one cope with symptoms and improve overall functioning:

1. Gradual tapering: Discontinuing benzodiazepines slowly can help minimize the risk of developing BIND and mitigate the severity of symptoms.
2. Supportive care: Seek support from friends and family.
3. Join a positive, solution-focused support group.
4. Cognitive Behavioral Therapy can be helpful in coping with BIND symptoms.
5. The four cornerstones of well-being are healing: eat right (WFPB), move enough, stress less, and love well.
6. Learn coping skills and lifestyle modifications.
7. Avoid GABAergic medications and supplements.
8. Avoid exposure therapy or trauma therapy until more healed.
9. Work with a benzo-wise professional coach or therapist for education and coping skills.
10. Learn something new to distract from symptoms and to get a feel-good dose of dopamine.
11. Gentle exercise can help metabolize stress hormones.
12. Avoid stressful situations and make your home as stress-free as possible.

Conclusion

In conclusion, Benzodiazepine-Induced Neurological Dysfunction (BIND) is a concerning and often overlooked consequence of benzodiazepine use. It can cause a wide range of physical and psychological symptoms that may persist long after drug discontinuation. Patients affected by BIND often face difficulties in their personal and professional lives, and the lack of education and support from the medical community exacerbates the issue. While there is no universal treatment for BIND, gradual tapering, supportive care, and focusing on the four cornerstones of well-being can help alleviate symptoms and improve quality of life. Increasing awareness and understanding of BIND among healthcare professionals and the general public is crucial to ensure that those affected by this condition receive the appropriate care and support they deserve.

Thank you to the Colorado Consortium for making this information available. Thank you to the Benzodiazepine Information Coalition for their tireless mission of educating about the potential adverse effects of benzodiazepines taken as prescribed. In a few weeks, my course, Understanding Benzodiazepine Withdrawal/BIND for healthcare professionals, will be available. It is a seven-week, 2 CEUs, certification program. For more information, please contact me or sign up for my newsletter here.

These references are from BIND: The Patient Experience by Christy Huff, MD, Benzodiazepine Information Coalition (BIC), Director, and D E Foster, Benzodiazepine Action Work Group, Co-Chair, which can be accessed here: