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Experiences with benzodiazepine use, tapering, and discontinuation: an Internet survey

Authors:
  • Colorado Consortium for Prescription Drug Abuse Prevention

Abstract

Background Over 92 million prescriptions for benzodiazepines are dispensed in the United States annually, yet little is known about the experiences of those taking and discontinuing them. Objective The aim of this study is to assess the experiences of those taking, tapering, or having discontinued benzodiazepines. Methods An online survey ( n = 1207) elicited information about benzodiazepine use, including long-term use, tapering, discontinuation, and withdrawal symptoms. Results Symptoms associated with benzodiazepine use, tapering, and discontinuation were numerous and ranged from symptoms such as anxiety, insomnia, and nervousness to digestive problems, irregular heart rhythms, uncontrollable anger, photosensitivity, balance problems, and others. When asked how benzodiazepine symptoms affected their lives, 82.9% reported work problems, 86.3% had problems with social interactions and friendships, and 88.8% had problems with fun, recreation, and hobbies. Suicidal thoughts or attempted suicide was reported by 54.4%, and 46.8% said benzodiazepines caused lost employment. Most of the respondents for whom benzodiazepines were prescribed (76.2%) stated they had not been informed that benzodiazepines were indicated for short-term use only and that discontinuation might be difficult. About a third (31.5%) reported food allergies and/or seasonal allergies that occurred only after benzodiazepine use. Conclusion The trajectory of those who taper or discontinue benzodiazepines is unpredictable, and many patients experience a range of protracted and severe symptoms, even years after benzodiazepines were completely discontinued. Greater awareness is needed for both prescribers and patients about the potential for a difficult withdrawal from benzodiazepines.
https://doi.org/10.1177/20451253221082386
https://doi.org/10.1177/20451253221082386
Ther Adv Psychopharmacol
2022, Vol. 12: 1–10
DOI: 10.1177/
20451253221082386
© The Author(s), 2022.
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Introduction
Over 92 million benzodiazepine prescriptions
were dispensed in the United States in 2019,
making them one of the most prescribed medica-
tions in this country.1 In September 2020, the
US Food and Drug Administration (FDA)
announced class-wide changes in the approved
prescribing information for all benzodiazepines,
including an updated ‘boxed warning’ describ-
ing serious risks associated with their use and
that the continued use of benzodiazepines had
the potential to lead to clinically significant
physiologic dependence, and that these risks
increased with longer treatment duration and/or
higher daily doses.1 Benzodiazepines belong to a
class of pharmacological agents approved for
treatment of generalized anxiety disorder,
insomnia, seizures, panic disorders, social pho-
bia, and certain other conditions.2 In general,
their prescribed use is recommended to be short
term, no more than 2–4 weeks,3 but they are rou-
tinely prescribed and taken for much longer
Experiences with benzodiazepine use, tapering,
and discontinuation: an Internet survey
Alistair J. Reid Finlayson , Jane Macoubrie, Christy Huff, D.E. Foster
and Peter R. Martin
Abstract
Background: Over 92 million prescriptions for benzodiazepines are dispensed in the United
States annually, yet little is known about the experiences of those taking and discontinuing them.
Objective: The aim of this study is to assess the experiences of those taking, tapering, or
having discontinued benzodiazepines.
Methods: An online survey (n = 1207) elicited information about benzodiazepine use, including
long-term use, tapering, discontinuation, and withdrawal symptoms.
Results: Symptoms associated with benzodiazepine use, tapering, and discontinuation
were numerous and ranged from symptoms such as anxiety, insomnia, and nervousness to
digestive problems, irregular heart rhythms, uncontrollable anger, photosensitivity, balance
problems, and others. When asked how benzodiazepine symptoms affected their lives, 82.9%
reported work problems, 86.3% had problems with social interactions and friendships, and
88.8% had problems with fun, recreation, and hobbies. Suicidal thoughts or attempted suicide
was reported by 54.4%, and 46.8% said benzodiazepines caused lost employment. Most of the
respondents for whom benzodiazepines were prescribed (76.2%) stated they had not been
informed that benzodiazepines were indicated for short-term use only and that discontinuation
might be difficult. About a third (31.5%) reported food allergies and/or seasonal allergies that
occurred only after benzodiazepine use.
Conclusion: The trajectory of those who taper or discontinue benzodiazepines is
unpredictable, and many patients experience a range of protracted and severe symptoms,
even years after benzodiazepines were completely discontinued. Greater awareness is
needed for both prescribers and patients about the potential for a difficult withdrawal from
benzodiazepines.
Keywords: benzodiazepines, benzodiazepine withdrawal symptoms, neuroadaptation,
protracted benzodiazepine withdrawal symptoms
Received: 21 September 2021; revised manuscript accepted: 7 February 2022.
Correspondence to:
Alistair J. Reid Finlayson
Department of Psychiatry
and Behavioral Sciences,
Vanderbilt Psychiatric
Hospital, Vanderbilt
University Medical Center,
Suite 3010, 1601 23rd
Avenue South, Nashville,
TN 37212, USA.
reid.finlayson@vumc.org
Jane Macoubrie
University of Southern
California, Los Angeles,
CA, USA
Christy Huff
Benzodiazepine
Information Coalition,
Midvale, UT, USA
D.E. Foster
Benzodiazepine Action
Work Group, Colorado
Consortium for
Prescription Drug Abuse
Prevention, Aurora, CO,
USA
Peter R. Martin
Departments of Psychiatry
and Behavioral Sciences &
Pharmacology, Vanderbilt
University Medical Center,
Nashville, TN, USA
1082386TP
P0010.1177/20451253221082386Therapeutic Advances in Psychopharmacolo-
gyAJR Finlayson, J Macoubrie
research-article20222022
Original Research
Therapeutic Advances in Psychopharmacology 12
2 journals.sagepub.com/home/tpp
periods, even years.4 Over the mid- and long
term, benzodiazepines may cease to be effective
and/or cause adverse reactions,5–7 which may not
be properly recognized by patient or prescriber.
Chronic benzodiazepine users do not usually
engage in the typical patterns of illicit drug use
seen with such drugs as opioids, stimulants, or
alcohol. However, neuroadaptation does occur,
particularly with longer exposure and increasing
doses, which can make it difficult for people to
stop using benzodiazepines, even when they
wish to do so. These neuroplastic changes may
be enduring and cause prolonged and distressing
symptoms, even well after benzodiazepines are
discontinued.8
The medical community does not fully under-
stand the trajectory of benzodiazepine discon-
tinuation. As is the case with most drugs for
which use is associated with neuroadaptation,
the early phase of withdrawal typically involves
two components: first, removal of the drug from
the targeted neuroreceptor(s) and second, the
adaptive stress response manifested by auto-
nomic arousal.9 In general, this is called the
acute withdrawal syndrome. However, for ben-
zodiazepines, there is emerging evidence for
longer term consequences, which could be either
a protracted withdrawal syndrome or evidence
of enduring neurotoxicity, and which remain to
be well described or fully elucidated. Tolerance
due to neuroadaptation can allow for benzodiaz-
epine-related symptoms to emerge even while a
patient is still taking the full prescribed dose of
medication. Tolerance may result in emergence
of inter-dose symptoms despite taking the full
dose. When a patient tapers off benzodiazepines,
the same or other symptoms may emerge and
wax or wane over the course of the taper. When
the patient completely ceases to take benzodiaz-
epines, symptoms may persist for an undeter-
mined time period, although it is not clear
whether these are based on protracted with-
drawal phenomena or enduring neurotoxicity.9
While a slow taper is recommended for ceasing
benzodiazepine use,8 there is little clinical under-
standing of what this may involve and a paucity of
guidance to navigate the process. The aim of this
online survey was to document the personal expe-
riences of a convenience sample of individuals
who had used benzodiazepines, including those
currently taking a full prescription, those in the
process of tapering, and those who had com-
pletely discontinued benzodiazepines.
Materials and methods
An anonymous online survey was developed (see
Supplemental Appendix I) that recruited respond-
ents from 16 Internet sites as a convenience sample
(see Supplemental Appendix II). The survey con-
sisted of 19 questions, split into the following sec-
tions: demographics, history of benzodiazepine use,
symptoms, and outcomes (see Supplemental
Appendix I). To avoid duplication, the Qualtrics
Internet survey tool was employed so that only one
response could be submitted per IP address. The
survey was designed collaboratively by two of the
authors (J.M. and C.H.) and hosted on the
University of Southern California’s secure server.
The survey link was posted for a month three dif-
ferent times (October 2018, November 2018,
and January 2019). Among the sites that offered
the survey were several large benzodiazepine-
related websites and 10 Facebook groups related
to benzodiazepine use. A link to the survey was
also offered on some Facebook pages and Reddit
threads related to general health and mental
health. This allowed 48 collections (16 sites, three
times each), comprising 66.5% of the sample.
The remaining 33.5% of the sample originated
from organic Internet searches and referrals. It
was the intention of the authors to collect the
largest sample size possible.
Survey results were analyzed in SAS software by a
medical statistician and subsequently confirmed
by an experienced data scientist using the Microsoft
SQL server platform. The authors can make avail-
able to interested readers a full report on the steps
taken and data included for each point of analysis.
This article complies with Consensus-Based
Checklist for Reporting of Survey Studies
(CROSS) CROSS methodology.10
Results
A total of 1682 individuals started the survey, of
whom 1207 respondents were identified by the
source system as having finished the survey,
although some of these ‘finishers’ did not answer
every question. In this article, ‘respondents’ is the
term used to describe these identified finishers.
Respondents were 71% female, 26% male, and 2%
who preferred not to state their gender identity or
had other gender identity. Many respondents took
several different related drugs. Of the finished
respondents, 1190 had taken benzodiazepines, 247
had taken a Z-drug, 167 had taken antipsychotics,
222 had taken gamma-aminobutyric acid (GABA)
AJR Finlayson, J Macoubrie et al.
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analogues (such as the anticonvulsants gabapentin
and pregabalin), and 558 had taken antidepres-
sants. Many respondents took more than one class
of drug. In fact, 55.9% took a benzodiazepine and
at least one other of these drugs. Nearly all respond-
ents had a prescription for benzodiazepines (98.6%)
and most (68.4%) said they ‘definitely’ took their
benzodiazepines as prescribed, 22.0% said they
‘mostly’ took them as prescribed, while 8.7% said
they did not take them as prescribed.
Respondents were grouped into five age categories:
those <20 years (0.2%), 20–30 years (7.3%), >30
but <50 years (38.8%), >50 but <60 years (27.9%),
and >60 years (24.8%). Most respondents lived in
the United States (76.6%), but respondents came
from several countries, including Canada, the
United Kingdom, Australia, Japan, Germany,
France, Denmark, Ireland, and other countries.
About two-thirds of respondents (66.5%) found out
about the survey from a benzodiazepine support
group and 23.0% discovered it by Internet search.
Many respondents had taken more than one type
of benzodiazepine, whether concurrently or
sequentially. The most frequently taken benzodi-
azepines were clonazepam (52.9%), alprazolam
(41.7%), lorazepam (36.1%), and diazepam
(32.1%). Patients were prescribed benzodiaz-
epines for a wide range of conditions (see Table 1).
Symptoms
Most respondents had discontinued benzodiazepines
(63.2%), while 24.4% stated they were in the process
of tapering and 11.3% reported continuing on a full
dose. The symptoms experienced by patients in the
latter group are likely due to tolerance to the prescribed
dose of benzodiazepine, among those who had not yet
initiated a tapering dose reduction. Of those who had
discontinued benzodiazepines, 10.4% took a year or
longer to taper, although symptoms often persisted
beyond discontinuation. Of those who had tapered,
4.4% took >2 years to taper and 6.0% tapered for
more than 1 but less than 2 years. Of those who dis-
continued benzodiazepines, 5.2% reported they ‘with-
drew just fine without taper’ and 17.6% said they ‘did
not taper, quit abruptly but with consequences’.
Respondents were asked about symptoms that
occurred while they were taking full-dose benzodiaz-
epine therapy, during a taper, or after benzodiazepine
discontinuation. Note that many patients reported
multiple symptoms and many patients had tapered
more than once. Symptoms occurred in the majority
of patients, with certain symptoms persisting for a
year or more (see Table 2).
Benzodiazepine information
Most respondents (76.2%) said their health care
providers ‘definitely did not’ tell them that benzo-
diazepines were intended for short-term use and
discontinuation might be difficult, and 5.6% said
they were ‘probably not’ given this information. A
minority of respondents (6.1%) stated they had
been ‘clearly warned’ or ‘warned, but not suffi-
ciently’ (7.9%). A small number of respondents
(3.1%) had no recollection of whether or not they
were told about benzodiazepine risks.
Life effects
Respondents reported that in some cases, the symp-
toms associated with benzodiazepine discontinuation
had affected various aspects of their personal lives (see
Table 3). Adverse life consequences were attributed
to benzodiazepine use and/or withdrawal by some
respondents (see Table 4). Notably, more than half of
respondents to this question (54.4%) reported experi-
encing suicidal thoughts or had attempted suicide.
Table 1. Main reason for which the benzodiazepine(s) was originally
prescribed.
Main reason for prescription(s)
n = 1207
Number of
patients (%)
Situational anxiety 528 (43.7)
Insomnia, sleep 487 (40.3)
Panic attacks 481 (39.9)
Depression 398 (33.0)
Generalized anxiety disorder 286 (23.7)
Pain or nerve spasms 132 (10.9)
Muscle spasms or clenched muscles 106 (8.8)
Restless leg 53 (4.4)
Part of treatment assistance for cancer, major
illness, or accident
34 (2.8)
Seizures 20 (1.7)
Hallucinations or schizophrenia 17 (1.4)
Premenstrual syndrome 15 (1.2)
Other 195 (16.2)
Respondents could give more than one answer.
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New medical conditions not previously
experienced
Respondents were asked about current symptoms
they never experienced prior to benzodiazepine
use. About a third (31.5%) reported food allergies
and/or seasonal allergies that occurred only after
benzodiazepine use. Highly sensitive airways were
reported by 30.1% only after benzodiazepine use.
Sensitivity to food additives or other chemicals that
occurred only after benzodiazepine use was
reported by 41.2% of respondents, including mon-
osodium glutamate and soy (31.6%). While most
respondents denied any previous autoimmune
diagnosis, 18.1% reported being diagnosed with an
autoimmune disorder following benzodiazepine
initiation, whereas 11.5% indicated having received
an autoimmune diagnosis prior to starting benzodi-
azepines. Falls and fractures were reported to be a
problem in about one-third of respondents, with
5.9% saying such events had occurred before they
started benzodiazepines while 21.0% said these
problems began after starting benzodiazepines.
Patient comments
Respondents were allowed to make free-form com-
ments at the conclusion of the survey and hundreds
of comments were entered. In fact, the write-in
comments provided profound insights into benzo-
diazepine-related adverse effects and how patients
Table 2. Symptoms during or after benzodiazepine use or during a taper. Respondents could give more than one answer.
Symptom
(n=1,207)
Duration of Symptom Did not
experience this
Days Weeks Months Years
Low energy 7.0% 6.1% 21.5% 51.6% 12.9%
Nervousness, anxiety, fear 6.4% 7.8% 23.7% 50.2% 11.0%
Difficulty focusing, feeling distracted 7.0% 7.0% 21.5% 49.7% 13.8%
Sleep disturbances 6.8% 7.1% 23.9% 49.0% 12.2%
Memory loss 6.8% 5.4% 20.5% 44.2% 22.1%
Sensitivity to light, noise, talk, smell, triggering symptoms 6.1% 8.1% 21.7% 42.8% 20.4%
Muscle weakness 5.7% 8.2% 20.4% 36.0% 28.7%
Digestion, nausea, diarrhea, other stomach/gut issues 8.0% 8.3% 19.3% 38.9% 24.6%
Trembling or tingling in limbs, skin 8.4% 7.2% 21.0% 35.1% 27.4%
Symptoms triggered or worsened by foods, alcohol, or caffeine 6.7% 6.0% 19.6% 35.0% 31.7%
Stabbing pain, burning, aching sensation, or joint pain 6.6% 6.5% 20.6% 34.7% 30.6%
Head pain, pressure 8.6% 7.5% 21.6% 34.2% 27.2%
Difficulty driving or walking 7.6% 8.0% 20.2% 33.1% 30.2%
Balance problems 10.2% 8.0% 21.8% 31.0% 28.1%
Heart rhythm irregularities or high blood pressure 7.5% 7.7% 19.6% 30.7% 33.6%
Muscle spasms in back or limbs 9.8% 8.0% 16.8% 29.2% 35.3%
Uncontrollable crying or anger 9.6% 10.3% 22.4% 28.3% 28.6%
Difficulty breathing or swallowing 8.6% 8.0% 16.0% 20.6% 45.9%
No appetite, disinterest in food 9.6% 12.5% 21.4% 19.5% 36.1%
Akathisia, need to move or pace constantly 8.6% 8.4% 18.1% 19.1% 44.9%
Whole body trembling uncontrollably 12.4% 8.6% 14.8% 12.8% 50.4%
Hallucinations 9.7% 6.3% 9.4% 6.1% 67.6%
Whole or partial body seizures 8.7% 2.9% 4.2% 4.6% 78.7%
AJR Finlayson, J Macoubrie et al.
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deal with them. Several particularly relevant com-
ments have been selected and are offered here.
These comments have not been qualitatively ana-
lyzed. The authors identified nine broad themes
and selected relevant comments to represent each.
Comments reported on the difficulties of
benzodiazepine withdrawal
Many respondents described withdrawal as the
worst experience they ever had.
‘If I could think of the one worst possible thing
you could do to a person, it would be benzo
withdrawal. Beats cancer and Alzheimer’s
combined. If I could make it go away by chop-
ping my arms and legs off, I would!’
‘This is by far the worst thing to ever happen
to me. I have just recently begun to have
hope that I will make it off this poison’.
Health care professionals did not treat
them well
There was a great deal of criticism about clini-
cians, and little praise for doctors or caregivers. A
few said that their physicians ‘abandoned’ them as
they struggled to discontinue benzodiazepines.
‘I’m treated like I did something wrong for
taking the prescription as prescribed and never
told what it was and when I looked at medical
information years ago, she [my doctor] told
me not to because I was making up symptoms
by reading medical information’.
‘My doctor cut me off without warning. I
believe doctors who do this should lose
their license ... I went to the emergency
room within days of being discontinued and
was “locked down” in mental health unit for
9 days with no treatment except coloring in
a room full of dangerous patients’.
Tapering options were limited
One problem that respondents mentioned was
their difficulty in finding knowledgeable and
appropriate help to manage their physiologic
dependence.
Table 3. Respondents were asked how severely benzodiazepine discontinuation symptoms affected their professional and private
lives.
Domain Not at all Mild
problem
Moderate
problem
Severe
problem
Quite severe
problem
Enormous
problem
Work life 16.2% 4.5% 9.9% 9.9% 9.4% 49.1%
Fun, recreation, hobbies 10.3% 5.9% 9.4% 12.3% 13.3% 48.0%
Social interaction, friendships 12.8% 7.5% 11.2% 11.4% 14.5% 41.7%
Ability to take care of home, others 13.7% 7.8% 13.6% 12.3% 13.3% 38.4%
Relationship with spouse, family 14.3% 8.4% 14.7% 11.2% 12.8% 37.7%
Ability to drive or walk 22.8% 13.8% 15.2% 9.1% 9.0% 29.2%
Note that not all respondents answered this question (n = 1207).
Table 4. The use or withdrawal from benzodiazepines was associated with
a number of adverse life events.
Life consequence n = 1207
Significantly affected marriage, other relationships 56.8%
Suicidal thoughts or attempted suicide 54.4%
Lost a job, fired, became unable to work 46.8%
Experienced significant increase in medical costs 40.9%
Loss of wages or lower wages in reduced job capacity 32.6%
Lost savings or retirement funds 26.7%
Violent thoughts or actual violence against others 23.5%
Lost a home 12.6%
Lost a business (if business owner) 8.4%
Lost child custody 2.6%
None of these apply 18.6%
Note that not all respondents answered this question and respondents could give
more than one answer.
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‘This is my third taper ... much better
because I am going at a slow pace, but the
first two were just horrible’.
‘Very difficult to find a health provider that
will taper me off these awful chemicals’.
Some reported outright misrepresentation of
benzodiazepine risks
While nearly all respondents (>98%) were pre-
scribed benzodiazepines at some point, their rela-
tionship to the medical establishment often soured
as they experienced problems with adverse effects
or when they reported wanting to stop taking the
benzodiazepines.
‘The doctor who prescribed the benzo said
it was “medically impossible” to overdose
or become addicted to benzos. That is
plainly false’.
‘I was constantly coming down with mys-
tery illnesses from the drug and these ill-
nesses required additional medications to
cover up the problems. Doctors misled me
about my health and never once acknowl-
edged the pills could be the reason behind
any of my issues’.
Symptoms were numerous, could be severe,
and were long lasting
While a few respondents were able to discontinue
benzodiazepines with few or no symptoms, whether
abruptly or over time, many wrote in about persis-
tent and disturbing symptoms. Some respondents
had completely discontinued benzodiazepines but
still had symptoms, including one whose symptoms
were misdiagnosed as fibromyalgia.
‘Benzos ruined my life. I have been benzo-
free for two years and still in protracted
withdrawal’.
‘I went full blown psychosis and had seizures’.
Some reported different symptoms than the
ones listed in the multiple-choice sections of
the survey
The main symptoms associated with benzodiaze-
pine withdrawal and tapering are captured in sur-
vey questions, but respondents added others.
‘I don’t have emotional responses except
fear and anxiety since benzo use. I have
trouble feeling empathy and love since
benzo use. This to me is the worst symptom
I currently have’.
One respondent who tapered off Valium®
[diazepam] after 37 years of low-dose treat-
ment reported unusual symptoms during
the withdrawal: ‘Feeling bee stings, inner
shakes, pressure on the chest, difficulty
making sense of traffic lights’.
‘Please add tinnitus to the withdrawal
symptoms’.
There were adverse consequences in their
personal and professional lives because of
benzodiazepine use, tapering, and withdrawal
The adverse effects of benzodiazepines exceeded
physical symptoms and sometimes involved nega-
tive events in the respondents’ personal, social,
psychological, and professional lives.
‘Lost my successful PR company’.
‘These drugs ... have robbed my child of his
mum’.
‘I lost my corporate job after 20 years with
the same employer due to low-dose benzo-
diazepines. This drug destroyed my entire
health, personality, and quality of life’.
Many reported suicidal thoughts and actions
While many respondents described despair,
anguish, and hopelessness, some described spe-
cifically suicidal intentions.
‘I tried to commit suicide by stabbing
myself in the heart. Knife was too big to fit
between my ribs. So, I stabbed myself three
times. I felt nothing’.
‘I attempted suicide three times after my last
dose of benzos and Ambien® [zolpidem]. I
have never been suicidal before benzo use’.
Some respondents reported successful tapers
with minimal complaints
While most respondents who wrote in comments
expressed difficulty and despair, a few had fully or
partially positive experiences with benzodiazepine
treatment and/or discontinuation. It would be
important to identify this group as well as those
for whom withdrawal is difficult; the latter need
specialists to treat them, but not the former.
‘I have recovered enormously but was disa-
bled by benzos and Elavil® [amitriptyline] for
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20 years, diagnosed as fibromyalgia. Got 80%
health back when quit! But suffered bizarre
symptoms like depression, akathisia, and hal-
lucinations never before experienced’.
‘I was prescribed diazepam for muscle
spasms after spine surgery. I used it exactly
as prescribed, stopped when I no longer
needed it, and had zero withdrawal or other
problems’.
Discussion/conclusion
This survey found that troublesome symptoms
associated with benzodiazepine use could emerge
while patients were still taking a full dose of medi-
cation under clinical supervision and that these
symptoms persisted over the course of tapering
and even long after complete discontinuation.
While there is a long list of symptoms that can
occur, certain predominant symptoms emerged
such as low energy, anxiety, nervousness, fearful-
ness, distractedness, and problems with sleep and
memory. However, a wide range of other symp-
toms, including photosensitivity, gastrointestinal
problems, food allergies, cutaneous symptoms,
cephalgia, problems with balance, and others,
were reported. Symptoms were sometimes severe
enough to significantly affect family life, career,
and mental health adversely; symptoms lasted so
long after benzodiazepine discontinuation that
many respondents counted the duration in years.
In some cases, respondents described new symp-
toms they had not previously experienced after
benzodiazepine cessation. We do not propose to
mechanistically explain these symptoms here, but
they likely fall into two broad categories – those
due to withdrawal-related mechanisms and those
due to enduring neurotoxic changes.
One systematic review of benzodiazepine taper
protocols (28 studies) suggests that for older
adults, a taper should reduce the dose by 25%
every 1 or 2 weeks until the patient is drug free
and states, ‘no serious safety events were
reported’.11 About a third (36%) of patients in
this review had medication substitution, which
may have reduced reported symptoms. Moreover,
not all of the studies considered in this review
evaluated long-term symptoms. Busto etal. report
that benzodiazepine withdrawal symptoms ‘dis-
appeared over a four-week period’.12 Patients
were randomized to placebo or diazepam, mean-
ing one group quit benzodiazepines abruptly
while the other was tapered over 6 weeks. Patients
were followed over the course of a year. As
expected, placebo patients experienced a marked
increase in sometimes severe symptoms as soon
as the study began, but these symptoms decreased
gradually over time. This study was small; data
were collected for only 40 patients, none of whom
experienced seizures, disorientation, or other
severe symptoms and no hospitalizations were
necessary. A study of 57 benzodiazepine patients
who were abruptly discontinued from benzodiaz-
epines after > 1 year of treatment and a mean
daily dose of 14.1 mg diazepam equivalents
reported that peak severity of withdrawal effects
occurred in the first 2 days for short-acting and in
the fourth to seventh days for long-acting agents.13
This study followed patients for 5 weeks after
their last dose of benzodiazepines and thus could
not report on long-term symptoms. The perspec-
tive of physicians has been that short-term detoxi-
fication or tapering is equally effective, but our
survey results suggest that only 22.8% of respond-
ents could abruptly discontinue benzodiazepines.
Our results show that many benzodiazepine users
experience severe, debilitating, and prolonged
withdrawal symptoms that not only persist
beyond the ‘seven days’ mentioned above, even
lasting for months and years, after the drug is dis-
continued. Many of the large number of write-in
comments from respondents described attempt-
ing to quit benzodiazepines with minimal to no
support from the health care system. A few were
harshly critical of health care professionals who
minimized their distress or disbelieved their
symptoms. Many articles that discuss benzodiaz-
epine withdrawal symptoms focus on a handful of
symptoms, namely, sleep problems, anxiety, irri-
tability, and confusion,14 although multiple symp-
toms have been credibly reported8 and were
found in our survey. Thus, patients who are being
deprescribed or who want to stop benzodiaz-
epines on their own are often ill-prepared and
uninformed about the symptoms that may occur
and how to manage them. Moreover, the physi-
cians to whom these patients turn are equally
unclear about just how variable the course of ben-
zodiazepine discontinuation can be and may tend
to falsely attribute more prolonged withdrawal
symptoms to primary psychopathology.
Well-meaning clinicians may be misled into
thinking that benzodiazepine withdrawal is brief
and manageable, even if it is unpleasant. For
example, the package insert for clonazepam says
that the drug should not be discontinued
abruptly, but ‘treatment should be discontinued
gradually, with a decrease of 0.125 mg BID every
Therapeutic Advances in Psychopharmacology 12
8 journals.sagepub.com/home/tpp
three days, until the drug is completely with-
drawn’.15 This is probably a too-rapid tapering
plan based on the experience of the respondents
in this survey. However, clinicians may give more
credence to package labeling and literature than
the patient, to the extent that those who have
prolonged or severe symptoms may be dismissed
as having primary psychopathology or be accused
of malingering. Accordingly, those struggling
most with benzodiazepine withdrawal symptoms
may be the least likely to receive adequate man-
agement and support. Should health care profes-
sionals believe that the individual is struggling
with the taper, they may be more inclined to refer
the patient to a psychiatrist, an addiction special-
ist, or to a rehabilitation program rather than
decelerating the taper. Conventional programs
designed for substance use disorders seem inap-
propriate for benzodiazepine patients, who have
neuroadaptation (physiologic dependence) with-
out the aberrant behaviors that would constitute
a use disorder.16
Although benzodiazepine physiologic depend-
ence was reported in the literature as early as
1961,17 it seems that many patients start benzodi-
azepine treatment without clear understanding of
the potential risks from these drugs. In fact, many
patients prescribed benzodiazepines have not
taken part in the medical decision-making pro-
cess in any meaningful way.18
This survey is an initial step to better recognition
of the risks of benzodiazepine therapy and the
awareness that withdrawal symptoms may be
more varied, more severe, and more prolonged
than are presented in the literature or product
labeling. Benzodiazepine withdrawal symptoms
are more common than most clinicians realize.
Rickels et al. found that 58–100% (criteria
dependent) of benzodiazepine users experience
some type of withdrawal reactions upon discon-
tinuation.13 Up to 44% of long-term benzodiaze-
pine users have persistent moderate to severe
withdrawal symptoms when they attempt to dis-
continue the drug.3,19 This survey and other
reports suggest that benzodiazepine withdrawal
symptoms show considerable interindividual vari-
ability and do not follow a predictable trajectory.
Protracted withdrawal symptoms are more com-
mon than previously appreciated.8 Further
research is needed to better understand how to
stratify which patients might be at particular risk
for either acute or protracted benzodiazepine
withdrawal.
Treatment options for those discontinuing ben-
zodiazepines are limited. A slow taper may help
reduce the duration, number, and intensity of
symptoms but does not necessarily prevent them.
Since even a gradual taper can be a difficult life
experience for the patient, collaboration between
patient and prescriber is needed, including unbi-
ased listening to and hearing their stories, plus
individualized care.
This survey found that 54% of respondents expressed
suicidal ideation while taking, tapering, or after dis-
continuing benzodiazepines. Benzodiazepines are
associated with an elevated risk of suicide or
attempted suicide,20 but suicidal thoughts or
attempted suicide in such a large proportion of sur-
vey respondents is alarming. In an epidemiological
study in Colorado from 2015 to 2017, 20% of the
3465 suicides in that period were decedents who had
a recent benzodiazepine exposure.21 Because it has
tremendous public health implications, this area is
worthy of further study.
This study has several limitations. The study
reported on ‘suicidal thoughts’, which can range
from fleeting notions of self-harm to passive des-
peration, preparatory planning, and disinhibition.
Suicidal thoughts may be underreported, even in
an anonymous online survey, as respondents
might hesitate or be embarrassed to report self-
destructive thoughts. There was no control group.
Much of the survey dealt with symptoms pre-
sented in multiple-choice lists, and it is possible
that patients may have been suggestible to the list
presented, may not have correctly remembered
past symptoms, or may incorrectly attribute cer-
tain symptoms or feelings to benzodiazepines. We
did not account for a nocebo effect. The large
number of write-in comments suggests that many
respondents felt the survey did not allow them to
fully describe the extent of their experiences and
emotions. Another limitation of our survey is that
it recruited respondents from social media and
online sources that deal with benzodiazepine use
and withdrawal. Respondents were self-selected,
forming a convenience sample that may not repre-
sent the population of benzodiazepine users as a
whole because visitors may have sought sites such
as these specifically because they have experienced
problems. Moreover, those who use the Internet
for health information tend to be younger,22 and
those who join online support groups for medical
conditions tend to be in generally worse health.23
Our results thus may not be generalizable to the
population of all people taking benzodiazepines.
AJR Finlayson, J Macoubrie et al.
journals.sagepub.com/home/tpp 9
Patient and clinician education are needed so that
patients taking benzodiazepines are aware of both
their appropriate and time-limited use and the
risks involved if exposure is prolonged. Further
research into protracted benzodiazepine with-
drawal is urgently needed.
Acknowledgements
The authors gratefully acknowledge the support
of the Alliance for Benzodiazepine Best Practices,
who helped provide funding for this study and
supported the medical writing for this article. The
authors also wish to express their gratitude to
Benzodiazepine Information Coalition for its
assistance in survey development and distribution
as well as review of the manuscript and contents.
The authors thank Dr. Steven Wright for his
review of this manuscript prior to publication.
The authors acknowledge the medical writing
and editing services of Jo Ann LeQuang, whose
fees were covered by the Alliance for Benzo-
diazepine Best Practices.
Author contributions
Alistair J. Reid Finlayson: Conceptualization;
Project administration; Writing – review &
editing.
Jane Macoubrie: Conceptualization; Methodo-
logy; Writing – review & editing.
Christy Huff: Conceptualization; Methodology;
Writing – review & editing.
D.E. Foster: Formal analysis; Writing – review
& editing.
Peter R. Martin: Methodology; Writing – review
& editing.
Conflict of interest statement
The authors declared no potential conflicts of
interest with respect to the research, authorship,
and/or publication of this article.
Funding
The authors disclosed receipt of the following
financial support for the research, authorship,
and/or publication of this article: This study was
not funded by any grant. The Alliance for
Benzodiazepine Best Practices has paid for the
services of a medical writer and associated article
publication costs.
Ethics statement
The study was approved by the University of
Southern California Institutional Review Board
(#UP-18-07736) and the Vanderbilt University
Institutional Review Board (#200521). The study
was granted an exemption from requiring written
informed consent from respondents.
ORCID iD
Alistair J. Reid Finlayson https://orcid.org/
0000-0002-6474-6608
Data availability statement
The data that support the findings of this study
are available; please contact Dr. Jane Macoubrie
at janemacoubrie@zoho.com.
Supplemental material
Supplemental material for this article is available
online.
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Background: Suicide rates have been climbing in the U.S., particularly in Rocky Mountain states such as Colorado. Benzodiazepines have been linked with suicidal ideation, but there have been few population level assessments of this link. We conducted a public health assessment to determine the epidemiology and prevalence of recent benzodiazepine exposure, among suicide deaths in Colorado from 2015 to 17. Methods: This epidemiologic assessment linked Colorado's Prescription Drug Monitoring Program, death certificate data, and Violent Death Reporting System to determine patterns of benzodiazepine exposure among suicide deaths in Colorado between 2015 and 2017. Recent benzodiazepine exposure was defined as receiving a prescription within 30 days of death or having a positive toxicology screen post-mortem. Results: Among the 3465 suicide deaths in Colorado between 2015 and 2017, 20% had recent benzodiazepine exposure, and nearly 50% of those also had recent opioid exposure. Recent benzodiazepine exposure was more common among females than males (34% versus 16%). Among suicide deaths, those who died via drug overdose were more likely to have had recent benzodiazepine exposure (48%), compared to suicides by firearm (17%), hanging/asphyxiation (13%) and all other methods (approximately 20%). Conclusions: Benzodiazepines have been linked to suicidal ideation, but population level assessments of benzodiazepine exposure among suicide deaths are rare. Our epidemiologic assessment indicates a relatively high prevalence of recent benzodiazepine exposure that warrants further investigation from both clinical and public health perspectives.
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