It’s complicated.
Actually, it’s quite confusing.
But most of all and importantly, it’s mischaracterized.
Benzodiazepine-related problems are often categorized as “addiction,” when in fact, for the vast majority of those who have difficulties, that diagnosis simply does not apply. Involved in family medicine for 36 years and addiction medicine for 31 years, I have only treated one patient – precisely one – with true benzodiazepine addiction. It’s rare.
How do we make sense of this?
What is this thing called “addiction”?
And how does that differ from the challenges faced by most benzodiazepine survivors?
The disease of addiction is a disease of the brain reward system characterized by the three “C’s” – all of which must occur together in order to make the diagnosis:
- Compusion to use for reasons other than for which they are prescribed
- Loss of Control with amounts used significantly increased over time and more than intended by the prescriber and the patient
- Continued use despite adverse consequences which are recognized by the user as problematic
Although non-addicted benzodiazepine survivors may experience the third criteria, they are not driven to do so by craving that leads to inappropriate and excessive overuse. On the contrary, it is physical dependence including overwhelming withdrawal symptoms that binds them to continued use, not addiction. They have what is probably better termed as a benzodiazepine brain injury – “benzo brain” – which results in the wide array of symptoms that differ from person to person and can be so devastating.
Misapplying these criteria is compounded by a misunderstanding of how to use the detailed criteria found in the Diagnostic and Statistical Manual, version 5 (DSM-5) which are as follows:
A problematic pattern of sedative, hypnotic, or anxiolytic use leading to clinically significant impairment or distress, as manifested by at least two of the following, occurring within a 12-month period:
- Sedatives, hypnotics, or anxiolytics is often taken in larger amounts or over a longer period than was intended.
- There is a persistent desire or unsuccessful efforts to cut down or control sedative, hypnotic, or anxiolytic use.
- A great deal of time is spent in activities necessary to obtain the sedative, hypnotic, or anxiolytic; use the sedative, hypnotic, or anxiolytic; or recover from its effects.
- Craving, or a strong desire or urge to use the sedative, hypnotic, or anxiolytic.
- Recurrent sedative, hypnotic, or anxiolytic use resulting in a failure to fulfill major role obligations at work, school, or home (e.g., repeated absences from work or poor performance related to sedative, hypnotic, or anxiolytic use; sedative-, hypnotic-, or anxiolytic-related absences, suspensions, or expulsions from school; neglect of children or household).
- Continued sedative, hypnotic, or anxiolytic use despite having persistent or recurrent social or interpersonal problems caused or exacerbated by the effects of sedatives, hypnotics, or anxiolytics (e.g., arguments with a spouse about consequences of intoxication; physical fights).
- Important social, occupational, or recreational activities are given up or reduced because of sedative, hypnotic, or anxiolytic use.
- Recurrent sedative, hypnotic, or anxiolytic use in situations in which it is physically hazardous (e.g., driving an automobile or operating a machine when impaired by sedative, hypnotic, or anxiolytic use).
- Sedative, hypnotic, or anxiolytic use is continued despite knowledge of having a persistent or recurrent physical or psychological problem that is likely to have been caused or exacerbated by the sedative, hypnotic, or anxiolytic.
- Tolerance, as defined by either of the following: a) A need for markedly increased amounts of the sedative, hypnotic, or anxiolytic to achieve intoxication or desired effect. b) A markedly diminished effect with continued use of the same amount of the sedative, hypnotic, or anxiolytic.
- Withdrawal, as manifested by either of the following: a) The characteristic withdrawal syndrome for sedatives, hypnotics, or anxiolytics. b) Sedatives, hypnotics, or anxiolytics (or a closely related substance, such as alcohol) are taken to relieve or avoid withdrawal symptoms.
Tolerance and withdrawal (numbers 10 and 11) are criteria that are not to be used when benzodiazepines are prescribed because these are expected responses to normal prescribing and do not reflect non-medical use in that context. It is easy to see how a medical provider might view many of the other criteria (1, 2, 5, 6, 7, 9 especially) applicable to those with major benzodiazepine adverse reactions. However as above, for most of these patients, the reason for continued benzodiazepine use despite bad outcomes is not craving or non-medical use but rather the inability to discontinue use successfully – often because of the inability of the medical provider to assist in withdrawal. These criteria, therefore, should not be applied to these individuals.
We medical providers did not and generally still do not understand and act on this this for a number of reasons:
- Absence of updated knowledge that overplay benefits, in particular wrongly believing for most people benzodiazepine use long term remains effective
- Absence of updated knowledge that alternative treatments might work better and safer
- Absence of patient requests to increase dosing which could suggest non-medical use
- Insufficient recognition that important symptoms could be due to benzodiazepines, thinking rather they are related to: (a) Inadequate treatment of the medical condition treated (e.g., anxiety or insomnia), (b) Worsening of the medical condition treated (e.g., anxiety or insomnia, (c) Development of a new medical condition
- Focus on other medical problems like opioid addiction or pain felt to be of higher priority
- Focus on other medications like opioids felt to be of higher priority
- Insufficient training, skills, and patience to assist in the benzodiazepine withdrawal process
- Perception that withdrawal is more harmful and difficult than continued prescribing
- Absence of guidance from guidelines and key opinion leaders to highlight the evidence-based research and provide direction for best clinical practices
- Not listening at all or not listening closely enough to what patients are saying
Truly, we medical providers weren’t and aren’t listening,
and benzodiazepine survivors know this all too well.
Persons with substance-related problems often feel stigmatized. For persons with a valid diagnosis of addiction, “addict” puts them in a box that implies that that is all they are, when, in fact they are so much more: a mother, a father, a daughter, a son with a life with a career, a family, interests, hopes, aspirations, and dreams. Though it should not be the case, “addict” can carry the tone of being weak-willed, inherently flawed, morally degenerate, even criminal – none of which is necessarily true. Persons with addiction should not be stigmatized, nor should they feel stigmatized.
For non-addicted persons with benzodiazepine-related trouble, it goes beyond this. Helping them manage and treat benzodiazepine trauma is entirely different from addressing benzodiazepine addiction – a difference that makes difference. Wrong diagnosis translates to wrong treatment and will not lead to effective solutions. .
To become benzowise we need to understand this difference and respond accordingly.
Poor prescribing practices are built around misconceptions like this and so much more.
We can and must do better.
To all the benzodiazepine survivors who kept courage when we weren’t listening
and to all those who did not survive,
I apologize.
My sister was prescribed Ativan 4 years ago, after she was diagnosed with Cushings Disease. She had successful Cushings surgery a year ago, after which she attempted to taper off the Ativan. She swtiched to Valium and did a slow taper over about 6 months and was off of it for 3 weeks when she had a severe resurgence of withdrawal symptoms and, in her desperation, she took Ativan again. She became suicidal and went to a crisis center for a week. She was off of benzos again for a few weeks and then had another bout of severe withdrawal symptoms. Her doctor was not sympathetic with her severe symptoms and her relapse and said he would not prescribe the drug anymore. She was in constant agony, taking Ativan but getting little relief, waking in cold sweats, suffering phantom pain and screaming in agony. Her husband attempted to get another doctor, but she couldn’t take the agony of withdrawal anymore. Three weeks ago, she shot herself in the head and killed herself.
My husband has been perscribed alprazolam for over a decade to treat his agoraphobia and severe generalized anxiety. He and his doctor are both aware that the long term use has lead to physical dependence, and thankfully his doctor is also well aware that he needs to taper off Xanax at his own pace and with an amount he decides is comfortable. Unfortunately we have learned the hard way that a misinformed doctor is not the only thing that can come between having his medication and being suddenly and dangerously ripped off of them. This month while trying to pick up his persciption from our usual pharmacy, the pharmacist (who must be new as we didn’t recognize her) suddenly came to the window and told us that she couldn’t fill his perscription unless we got a doctor closer to where the pharmacy is located. His doctor is in the same state but not the same city we moved to 3 years ago, however this was not an issue ever before and obviously he didn’t think suddenly switching to a new doctor who may or may not understand his dependence to Xanax would be a good idea. We tried to just have the perscription moved to another pharmacy but she flagged it and so no other pharmacy will fill it. Now he has been to the ER twice to get about 4 days worth of Xanax perscribed to him until we can work this out, but with no insurance or guidance on what we should do, the stress has been a complete nightmare. Literally constant panic and uncertainty. The pharmacist keeps giving him things he must do before she gives him his refill like making a new appointment with a local doctor that she can verify. Putting out foot down about this leads to her saying something like “Well I’m going to call your doctor” (even though we know they already spoke because his doctor told us) and then never call us back. It’s awful, we don’t know what to do.
I need help with this situation so bad. I’ve been sober for 9 years and was prescribed klonopin 3 years ago bc my anxiety is so debilitating. Now it’s really messed w my head and makes me feel so weird, physically, mentally, emotionally. Most people I know in aa are obviously not being very understanding. I wish I could talk to you about what to do so bad. Thank you for caring.
Dr. Wright, my name is Tom Wagner. I am Jonathan Wagner’s father. I was recently on CNN(this is life w/Lisa Ling) concerning this horrible issue. We have started a 501c foundation to combat the problem. Our problem is we can’t get anyone in the medical community to help. Would you be able to give us any assistance?We are desperate but extremely determined. Thanks Tom
Tom, Have you or your wife had any participating medical personnel involved in the foundation for your son?
I am presently suffering acute benzo withdrawal, after originally being prescribed benzos by a cardiologist for a heart condition in 2011. The story evolves, but right now I am holding on to my life by a thread. Any help or support seems crucial. There are so many that are clueless, and that adds to the frustration for those like me. I fear it won’t happen in my lifetime.
I am sickened with the story of your son’s spiral. Both you and he present as capable and loving people.
It scares me that turning to a physician in the most grueling times can be so risky.
My prayers are with you, and your wife.
Am going through withdrawals from Zopax. Week 8 and it is Hell. If I could go back 12 years ago I would and change it all.
Dr’s unfortunately do not know what the dire consequences are of prescribing these medications long term.
I so appreciate the fact that Dr Steven Wright has studied and tried to make sense for all of us gineau pigs(which is how I feel we are)
Thank you so very much! In the greatest depths of my despair you have shone a light and I see an end to this dark tunnel I am currently limping through.
Tom, I have a doctor in Mass who after a harrowing detox off from Klonapin has reinstated my script, and as soon as I am stabilized will start a slow taper. I can ask her, what exactly are you looking for help?
Thank you for writing this. I wish this was better known information
Could be my sons story as well.Died victim of suicde. Nov1 2013.Dependant on Benzos..suicide a few weeks after released from In patient treatment.
Same thi g happened yo my brother in 2015
Dr. Wright, my name is Tom Wagner. I am Jonathan Wagner’s father. I was recently on CNN(this is life w/Lisa Ling) concerning this horrible issue. We have started a 501c foundation to combat the problem. Our problem is we can’t get anyone in the medical community to help. Would you be able to give us any assistance?We are desperate but extremely determined. Thanks Tom
Tom, I am sorry that I just now saw this. Could you reach out to me at sleighwright@gmail.com
It’s my true hope that articles like this can reach the greater public and the medical field. My died from this “benzo brain”. He took the medication, as prescribed from a general practitioner, for about 6 years. He clearly was having adverse effects. My family, not understanding, sent him to a detox center which stopped him cold turkey. After multiple hospital admissions, he committed suicide 4 months out. He greatly missed. He was an educated, bright, funny man with a family. I have a firm belief that if my brother never took this medication long term, that he would be alive today. He changed while he was on it and he developed multiple physical symptoms. He tried to get off of it under a doctor’s care more than once but was never successful. I hope that others suffering from the withdrawal find a peaceful space with lots of support to survive the withdrawal period which evidently can last years. My heart breaks for everyone going through this.
I’m so so sorry. I have a feeling this may be my only outcome as well. This battle is so hard. Hugs to you.
It gives me a good feeling that sum doctors are finally looking into this benzo horror that I’ve been living with over 32 years I wish no one has to go through what I have or worse now if just all the other doctors would get on board with you they could maybe fix this and stop the suffering
Thank you, Dr. Wright, for this excellent, humble, and heartfelt piece. I hope it will be read by an enormous number of people – prescribers, therapists, and patients alike.
I thank you as well!
Thank you BIC and Dr. Wright for this article. Very informative and insightful. All along I have been made out to be an addict suffering from drug abuse. It is all my fault. I have created my situation for myself. The only thing I ever did as a compliant patient was to take my Xanax Rx as prescribed for 14 years. But yet IT IS MY PROBLEM not the results of long term Benzo use and being taken off cold turkey in the Hospital due to my attempted suicide OD on Benzos.
2 years later Benzo free suffering I am still looked at like I did something wrong, It is my fault… Benzos are not to blame.
Jerry