The ASAM Joint Clinical Practice Guideline on Benzodiazepine Tapering is now available. Some of us at BIC, including the late Dr. Christy Huff, served voluntarily on the Patients with Lived Experience (PWLE) panel (see our names on page 2). This guideline was funded by an FDA grant in response to the boxed warning that our organization and the patient community helped bring about by collectively reporting our harm to the FDA.
As the PWLE panel, we successfully advocated for key changes we’re incredibly proud of, including the recognition of Benzodiazepine-Induced Neurological Dysfunction (BIND) and lowering the recommended tapering rate to 5-10%. However, there are still significant concerns, particularly with the recommendations for inpatient detox in some cases and the over-reliance on adjunctive medications.
While these guidelines are far from perfect, given they come from the very institutions and providers that contributed to the problem in the first place, they represent a significant improvement over previous standards. We were able to ensure important patient-centered changes were included. As a result, tapering off these medications will be safer than it would have been without our input.
Despite the shortcomings, we believe these guidelines will likely lead to greater validation for patients by their medical providers and will help establish a ‘standard of care’ for slow tapering, something that didn’t exist before.
We’re sharing this now to hear your thoughts and will post a more detailed response to the guidelines soon. Let us know what you think!
Click here to read the guideline.
Clinical Trial
Oxcarbazepine in rapid benzodiazepine detoxification
Bernhard Croissant et al. Am J Drug Alcohol Abuse. 2008.
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Abstract
Objective: This study aims at evaluating the tolerability and efficacy of the antiepileptic drug oxcarbazepine in benzodiazepine detoxification in ten patients.
Methods: In this case study of an inpatient withdrawal program, each of the ten patients was detoxified using oxcarbazepine and completed withdrawal successfully without the occurrence of withdrawal symptoms. The detoxification program followed an outlined dosage scheme with oxcarbazepine increase and benzodiazepine tapering.
Results: The rapidity of benzodiazepine detoxification using oxcarbazepine was remarkable, benzodiazepine withdrawal being completed in as little as 11 days.
Conclusions: The results support the assumption that oxcarbazepine is a valuable drug for inpatient benzodiazepine withdrawal programs.
PubMed Disclaimer
Has anyone heard of this study?
Yes. This study includes 10 patients, but follow-up data is available for only one of them. The reported success rate in the study is 21%. Since some patients do not experience withdrawal symptoms at all, this 21% may reflect those cases rather than the effectiveness of oxcarbazepine.
Getting any progress at all out of those people is an unbelievable achievement.
Everything in the guideline that is wrong is utterly predictable. The degree to which it gets anything right is due not just to the advocacy of the patient panel but to the effective preparatory work done over many years—resulting in the series of papers published in PLOS and elsewhere, and in the collaborative process leading to incorporation of patient knowledge/experience in the Maudsley DPG.
That preparatory work began before the work by BIC and its partners in the community, with the foundational step taken by Geraldine Burns in reaching out to Professor Heather Ashton, which resulted in her writing the Ashton Manual for the public.
It includes years of grass roots organizing for self help by the patient community, in peer-led groups like Benzo Buddies and sister groups for other psych-drug harm like Surviving Antidepressants, decades of effort mostly beginning (if I have my history right) in the UK.
The arrogant denial by the psychiatric establishment that we know what we are talking about is captured on film in the scenes from As Prescribed in which “eminent doctors” condescendingly dismiss patient reports of severe harm from prescribed use of benzodiazepines as something they testify that they have never seen in decades of clinical experience.
It takes enormous hutzpah to go up against that kind of entrenched power and ignorance. Thank you for having made—and for continuing to make—that effort on behalf of the harmed community, and the general public.
Thank you!
I admire the tireless and constant work from all of you at BIC & other Benzo organizations. I understand that the progress may be slower than we’d hope, but it’s meaningful progress. It can & will only go up from here. When I am healed enough, I would be honored to be a part of any organization that works towards benzo reform and deprescribing properly. I am so excited about how far we have come as a community!!! Many thanks & so much respect to all of you.
P.S. Rest In Peace Dr. Christy Huff
This year has gone by so fast…
Was prescribed Celexa,Valium, Xanax, Klonopin and Remeron over the course of 15 years. I quit cold turkey out of fear of the medications side affects and after almost two years still have sleep problems, daily bouts of paralysis of my lower extremities wiith uncomfortable sensation in arms and legs and exaggerated anxiety. Recommend a book titled Benzo Free. I am 75 and there is no medical help where I reside to get off these drugs. Been to various drs. and they only suggest different medications with no tapering help. Wish there was a mentoring place to share our experiences.
Thank you so much for your advocacy and hard work. Does the document address the correlation between a ‘fast taper’ or abrupt discontinuation with PAWS and or BIND?
This is so much better than original draft! I think there should be some mention of all of the people with lived experience who spent so much time commenting on the draft guidelines! But great move in right direction
I only take 0.5-1 mg at night to turn my mind off. Is that an issue?
I insisted on following the Ashton method after treading her book four times. Had to tell the clinician if she wouldn’t follow it I’d find someone who would. I’m ahead if the schedule after being on Restoril and Xanax for 15 years and I found it to be very patient-centered. I can go at my own pace and pause if needed; it was a good choice for me. I experienced very little breakthrough anxiety. I hope to be finished by the end of this year, an 18-month taper. I won’t take anti-depressants that are pushed at me as a cure-all and create the same dependency problems.
Couple of “concerns” right out of the gate:
1.) Dr Ashton had thoughts about “counseling” during withdrawal. CBT and other forms of “talk therapy”,”reframing”,imagery,hypnosis, and on and on are given lauds and praises for the “success” they somehow foster in withdrawal. To be frank,my benzo withdrawal was so horrific that the LAST thing I wanted/needed was to talk about my “feelings”,hear a therapist droning on with all sorts of ridiculous advice,or ponder over every hurt and trial in my life. I completely realize that it works for some,but I found it misguided in the extreme and totally out of touch with my withdrawal. I think there is a newer form of counseling that deals with acceptance of reality. Maybe the counselors should try that on both for themselves and their unwitting,suffering clients.
2.)About adjunct drugs for benzo withdrawal. Once again,I refer to the great Dr Ashton:”…nothing replaces a benzo,but a benzo.” SSRI’s are rightly beginning to get the bad press they deserve. They are yet another drug group with terrible withdrawal. Also,they have some serious side effects and are not a benzo. As far as using ANY barbituates: seriously??? Benzos actually came about in part as much safer drug alternatives compared to barbituates. Due to the highly addictive properties of barbituates and the frequent,deadly accidental overdoses,the first benzos and “z-drugs”were viewed as life-savers. I have also heard that “GAD” is pretty much a “basket diagnosis” for what is normal anxiety for many people. (See “Medicating Normal”.) Buspar is not a benzo and I have never encountered anyone who has been on a benzo that gets the same effects from Buspar.
Benzo withdrawal is a road of Hellish suffering. I’ve walked and crawled it. I’m off benzos 2 years and every other trial I go through,no matter how awful. is prefaced with:”…at least I’m off Ativan and no longer in active withdrawal”. God bless all my fellow sufferers. It CAN be done,but there’s nobody who can really help you at times,but you.
I totally agree and that is how I did it too!
Congrats on 2 years! It is so inspirational to me every time I read about someone coming off & staying off. Thanks for sharing.
Is the 5-10% tapering rate referring to monthly rates?
Thank You,
Marvin
I have been prescribed benzodiazepines for 25+ years.I am a 69 year old male.I tried for 9 months to detox with little help from my doctor.The withdrawals were horrendous so I had to start back to 30mg diazepam.
These meds have caused so much damage to my brain,blood pressure and social life.
Please help us to detox .
I have concluded that I will have to take them for the rest of my life.
Please help.
Tony,
Start researching your benzo use in a scientific manner. In addition to the BIC literature, scour the net for medical research papers by pyschopharmacologists, neurologists, etc. You’ll learn in detail how your brain is affected which is critical to understanding what is happening in your head. There are areas of your brain that have suffered catastrophic damage and a great deal of recovery centers on the patience to give your brain time to heal and learning to be comfortable with being uncomfortable.
After 25+ years of taking benzos it’s not unrealistic to expect to be tapering for 5 or more years, adjusting up or down according to how you react to the change in dosage. Most of this you’ll have to do yourself I’m sorry to say. If as you say it’s just too difficult to stop, there’s no shame in just continuing at a level that lets you cope and experience some degree of comfort.
I know what you’re going through and the road isn’t an easy one. Don’t be too hard on yourself.
T. Milazzo
Dear Tony,
I want to give you some “lived” encouragement. Get a copy of the “Ashton Manuel” and READ it. Read her very wise counsel and expert advice. She got people through withdrawal in their 80’s who had been prescribed benzos many,many years. Yes,withdrawal is brutal,BUT you go very slow and steady as you go. Your wean will be a matter of years,but,so what? Benzo withdrawal isn’t a contest or race. What better thing can you do for yourself?You didn’t get to age 69 without going through a lot of stuff that’s made you stronger than you know,and more to come.
Peace,my Brother.
Everyone is different ! I am in Tony’s shoes and I can’t come off no matter how slow . I am on 15mg of Valium and if I start to go down it throws off my whole system
5 years at 74 with a demented husband . Not happening
I am in your shoes . I am on 15 mg of Valium and I have tried to wean off I can’t do it . I have heart issues and and an aortic aneurysm. Plus I am a caretaker for my husband who has dementia. If I have to go off then that’s it. I am 74 and Ashton manual is too fast and mds have no clue about it . I wish you luck
Every step in the right direction is a very positive move!
Thank you all for what you do every day to set the sails in the right direction. Jj
Thank you for not backing down, for insisting that persons affected by benzos with lived experiences were given a voice. Although it doesn’t go as far as it should, I’m hopeful that the patient will be listened to and can participate more fully in the tapering process and it can be slowed or accelerated depending on the progress made rather than following a stringent set of guidelines.
Keep fighting the good fight. On a personal note I’ve just reached my three year anniversary after stopping benzos cold turkey. It was a journey I had to make on my own and I wouldn’t wish this on anyone.
T. Milazzo
Congratulations on your success Milazzo! 3 years is simply amazing 💜