Dear ASAM Team and Clinical Guideline Committee Members Developing the ‘Clinical Practice Guideline on Benzodiazepine Tapering’:
Members of Benzodiazepine Information Coalition have actively engaged with ASAM and its expert advisory panel, providing feedback on the draft guideline through the patient advisory panel and online public comment form. Below is a summary of our organization’s top concerns with the Clinical Practice Guideline on Benzodiazepine Tapering draft, ranked by priority, with support from medical professionals, researchers, and patients both within and outside our organization.
- Inpatient tapers are too heavily recommended. They should be reserved for extreme cases, such as a severe benzodiazepine use disorder where the patient cannot control use.
The current guidance recommends inpatient care for those with a history of severe or complicated withdrawal but does not acknowledge that these complications may result from an overly rapid taper directed by the medical provider. In such cases, stabilizing the dose and implementing a slower taper is often needed, not rapid inpatient withdrawal.
Inpatient facilities typically taper patients off benzodiazepines far too quickly, if they taper at all, and put the patient at risk for severe and protracted withdrawal syndromes, which can lead to suicidal ideation, suicide, or long-term disability. - A significant portion of patients prescribed benzodiazepines for more than four weeks will experience withdrawal symptoms for months to years post-taper, as noted by the FDA. The issue of protracted benzodiazepine withdrawal syndrome, especially from rapid cessation, should be recognized in this guidance. The current guideline does not mention this protracted harm. We recommend that the guideline not only highlight the potential long-term effects of benzodiazepine cessation but also call for medical assistance and appropriate research for those affected by protracted injury.
The Maudsley Deprescribing Guidelines indicate that post-withdrawal recovery, from the time the taper ends, can take 12 to 18 months and, in some cases, even longer. It estimates around 15% of patients will experience a protracted syndrome that can last months to years.
The FDA found, when issuing their 2020 boxed warning, that the median duration of withdrawal symptoms for all benzodiazepines in their case series was approximately 9.5 months and ranged from two weeks to eight years. - The 5-25% starting taper rate is too broad to be meaningful and allows for a taper starting at 25%—the likely default for the expeditious clinician—which will harm certain patients. Deprescribing rates should initially be limited to 5-10% of the current dose per month and adjusted based on patient response to minimize harm. Some sensitive patients may even require less than 5% per month. It’s better to “dip one’s toe in the pool” rather than “dive in head-first,” because once a withdrawal syndrome and neurological dysregulation occur, they are not always easily fixed, even by pausing the taper or increasing the dose.
We’ve found that some patients, for unknown reasons, do well with any taper rate, while others are harmed by an initial 25% reduction. Given the devastating and long-lasting nature of this harm, tapering guidance should not only warn about these risks but also provide schedules that reflect the needs of those most impacted. These patients cannot be identified in advance and are recognized only by their injuries during the deprescribing process.
ASAM asked us to provide evidence supporting this recommendation. We face the same limited evidence as ASAM. One study found that a 25% weekly reduction was ineffective for at least 32-42% of patients:
32% of long half-life and 42% of short half-life benzodiazepine treated patients were unable to achieve a drug-free state. The most difficulty was experienced in the last half of taper.
This aligns with our experience from clinical practice, advocacy, and direct lived experience, spanning many decades. Many studies with rapid reduction rates report high numbers of patient dropouts, an issue not properly explored in research. - Patients should be advised to reduce at 5-10% of the current dose, as opposed to the starting dose, per month so that reductions become smaller and smaller as total dose becomes lower. Many published guidelines support this approach, yet it’s not addressed in the current guideline draft. Scotland’s Polypharmacy Guide for Realistic Prescribing States:
Withdrawal should be gradual (e.g. 5–10% reduction every 1–2 weeks, or an eighth of the original dose fortnightly, with a slower reduction at lower doses), and titrated according to the severity of withdrawal symptoms.
The Maudsley Deprescribing Guidelines recommend 5-10% dose reductions every 2-4 weeks for longer-term users of benzodiazepines, reserving more rapid tapers for short-term users without significant risk factors for withdrawal effects. For longer-term users with greater risk factors it suggests tapers that are even slower than 5% dose reductions per month. Notably, all these reductions are based on the most recent dose so that the size of the reductions gets smaller and smaller as the dose gets lower.
This 2023 paper mentions 10% reductions made every 2 to 6 weeks from a global survey of deprescribing service and reports hyperbolic tapering:
Tapering medications gradually using broadly hyperbolic strategies. Most services tapered medications over at least a year or longer. Doses were reduced at 2–6 week intervals, allowing patients to stabilise before the next reduction. Taper lengths generally ranged from 6 months-3 years. Some services used broadly hyperbolic strategies meaning that the steps by which the dose is lowered are made smaller and smaller as the dose decreases, e.g. reductions of 10% of the prior dose.
Kaiser Permanente’s Benzodiazepine and Z-Drug Safety Guideline defines a slow taper as 10% every 2-4 weeks. It defines rapid as 25% every week. It warns:
Tapering is based on a proportion of the last dose, so doses become smaller as the total dose is lowered. For example, a reduction of 5-10% every 1-2 weeks, or an eighth of the daily dose every 2 weeks.
For high-risk people (over 6 months’ use, short half-life benzodiazepine, past history of withdrawal) a test reduction of 5-10% is more appropriate.
Final doses will need to be very small, so liquid formulations may be required.
Hyperbolic tapering principles dictate smaller reductions as the dose decreases due to receptor occupancy. Therefore, basing the percentage on the current dose, rather than the original dose, is the safest method for most patients. - Recommending that requiring older adults taper off benzodiazepines completely is over-emphasized. There should be a more nuanced discussion of evaluating the risks and benefits of continued use versus tapering in older adults prescribed long-term.
Our organization is in contact with countless older patients severely disabled by well-meaning providers forcing them off benzodiazepines without their consent.
Existing guidance discourages forced cessation. Scotland’s Polypharmacy Guide for Realistic Prescribing and NICE warn:
Do not pressurize the person to stop if they are not motivated to do so.
The Ashton Manual states:
The decision to withdraw is also the patient’s decision and should not be forced by the doctor.
As adults ages 50-64 have the highest prescription rates, prevention of older adult benzodiazepine prescribing should start much earlier with more judicious prescribing in younger populations. - Tapering with very long-acting agents like phenobarbital is typically not managed appropriately in an inpatient setting. For those patients requiring a very long taper, the duration of stay is not sufficient. Anecdotally, for patients with prescribed physical dependence alone, phenobarbital is unnecessary. Established benzodiazepine tapering methods are effective and adequate. The evidence supporting phenobarbital in the draft document is weak, with unclear and unconvincing outcomes.
- Shared decision making requires full informed consent, including the risks and benefits of both continuing as well as discontinuing benzodiazepines. As most of the risks of stopping benzodiazepines are not highlighted, this is not properly addressed in the guideline. This is also important for clinician education, so they can diagnose severe withdrawal and provide appropriate treatment and guidance, such as immediate updosing and a slower taper.
Patients should also be informed of the time commitment that may be required to taper, and then recover from the taper. The United Kingdom’s Guidance for Psychological Therapists indicates that two years to complete withdrawal is not unusual. This does not include the time needed for healing after withdrawal. - The tapering strategies outlined in this guideline are not sufficient to provide meaningful guidance to clinicians. More detailed instructions are needed, particularly for patients for whom simple pill cutting leads to overly large and rapid reductions that are harmful and ineffective. The guideline should provide comprehensive instruction on using liquid formulations from manufacturers or off-label options like compounded liquids, scales, or microtapering.
We strongly suggest implementing the approach utilized in The Maudsley Deprescribing Guidelines. Maudsley is the largest mental health training institution in the United Kingdom. The Australian College of GPs, the largest Australian professional GP organization, recently adopted this guideline. - The guideline does not help clarify the difference between relapse and withdrawal. Many patients are misdiagnosed with and treated for new or worsening mental health or other medical conditions that are actually associated with withdrawal-related symptoms.
The Maudsley Deprescribing Guidelines elaborate on this extensively. A symptom list, such as the one found on our website, in The Maudsley Deprescribing Guidelines, or in The Ashton Manual, would be useful in the guideline. The FDA found, when issuing the boxed warning, that approximately 80% of the cases in their case series described central nervous system symptoms, cardiovascular symptoms, and gastrointestinal symptoms. - “Long-term” should be defined as “>2-4 weeks” and used consistently throughout the guideline.
General Comments
- In our experience, the difference between addiction and prescribed physical dependence is commonly misunderstood by clinicians. This should be reiterated throughout the final guideline document. The FDA’s 2019 Industry Draft Guidance serves as a valuable resource for clarifying this distinction.
- It is difficult to tell the “areas with sufficient evidence” versus those with limited evidence, except by noting that the 40 recommendations were developed by “clinical consensus” rather than by “sufficient evidence”.
- The existing peer support system for benzodiazepine withdrawal and its sequelae is potentially inadequate for the demand that this guideline could generate.
- Words and phrases like “adherence” and “adhered to by the patient” within the document should be avoided. The tapering process should be guided by patient symptoms, with clinicians playing a less directive role. We fully support the aspects of the guideline promoting slowing the taper or taking breaks if patients experience severe symptoms. This approach prioritizes patient-centered care.
- The recommendation for adjunctive medications is unclear because there is weak and inconsistent evidence that any specific medications are effective for benzodiazepine withdrawal symptoms. NICE guidelines specifically recommend against using other medications. As stated in the ASAM Guidelines, pausing or slowing the pace of the taper and/or making smaller dose reductions is the most effective approach.
If patients still wish to try adjunctive medications, they should be informed that these drugs are off-label, unproven for this use, and could worsen their condition. However, we believe the choice should be left to them. The focus should be on helping patients access practical support, such as disability benefits and referrals to services like physical therapy. - Certain antibiotics, along with drugs and supplements that impact GABA, can aggravate withdrawal symptoms. Fluoroquinolones, a specific class of antibiotics, displace benzodiazepines from their binding sites on GABA receptors, potentially triggering acute withdrawal in those tapering or using benzodiazepines. While antibiotics may be necessary during benzodiazepine withdrawal, it’s advisable to avoid fluoroquinolones and other GABA-impacting substances whenever possible. This information should be included in guidelines to prevent avoidable patient harm, given that many providers may be unfamiliar with these interactions.
- The Sample Tapering Schedules and Case Descriptions listed in Appendix I do not represent the population that most engages with our organization, and the proposed tapering schedules may not be safe for them. We recommend that ASAM gather case descriptions representing a spectrum of experiences, including more severe cases. Recognizing and appropriately addressing those at risk of severe outcomes can help mitigate or, in some cases, even prevent them. This should be the primary goal of these guidelines.
- Physical dependence can develop rapidly, and the guideline should address this explicitly instead of prescribing specific timelines like 30 days. According to direct reports from the FDA, the median time for the onset of physical dependence or tolerance ranges from 3 days to 4 years. Because physical dependence precedes withdrawal, anyone who develops it may experience withdrawal symptoms, regardless of how long they have been prescribed the medication.
- Z-drugs cannot be ignored by this guideline, since they have the same mechanism of action as benzodiazepines, resulting in similar withdrawal syndromes. Clinicians and patients also require guidance to discontinue these agents safely and while minimizing withdrawal.
- There were many problems with the public comment period. Many in the patient withdrawal community we represent, including our co-founder, were locked out of the survey despite the instructions stating anyone could comment multiple times. Overall, we believe:
- the public comment period was too short, especially considering the length and complexity of the document
- the online format for commenting was overly complicated, although we appreciate the disability-friendly version that was eventually offered, its availability was not advertised on the ASAM website so we are unsure of how many were aware of its existence
- these difficulties and accessibility issues likely significantly reduced the quality and quantity of input received from patients, professionals, and the general public
- the public comment period was too short, especially considering the length and complexity of the document
Thank you for your time and attention.
Nicole Lamberson, PA, Medical Director of Benzodiazepine Information Coalition, Benzodiazepine Action Work Group Founding Member, ASAM Clinical Practice Guideline on Benzodiazepine Tapering Patient Panel
JC, BA, Benzodiazepine Information Coalition Co-Founder, Benzodiazepine Information Coalition Board of Directors, Benzodiazepine Action Work Group Founding Member, ASAM Clinical Practice Guideline on Benzodiazepine Tapering Patient Panel
Stephen LaCorte, JD, Benzodiazepine Information Coalition Board of Directors
Michael Bohan, MD, Board-Certified in Addiction Medicine and Internal Medicine, Benzodiazepine Information Coalition Medical Advisory Board
Lorna Gail Dawson, PMHNP, NP-C, Psychiatric Nurse Practitioner, Benzodiazepine Action Work Group Co-Chair, Benzodiazepine Information Coalition Medical Advisory Board
Harold Gottlieb, MD, MBA, Board-Certified in Internal Medicine, Benzodiazepine Information Coalition Medical Advisory Board
Patricia Halligan, MD, Board-Certified Addiction Psychiatrist, Benzodiazepine Information Coalition Medical Advisory Board
Mark Leeds, DO, Board-Certified Family Doctor, Addiction Medicine Specialist, Benzodiazepine Information Coalition Medical Advisory Board
Liz McCarthy, MA, LPC, Psychotherapist, Benzodiazepine Information Coalition Medical Advisory Board
Chris Paige, LCSW, Psychotherapist, Benzodiazepine Information Coalition Medical Advisory Board
Sonja Styblo, LMSW, Psychotherapist, Benzodiazepine Information Coalition Medical Advisory Board
Josef Witt-Doerring, MD, Board-Certified Psychiatrist, Former FDA Medical Officer, Benzodiazepine Information Coalition Medical Advisory Board
Jim Wright, MD, PhD, FRCPC, Specialist in Internal Medicine and Clinical Pharmacology, Managing Director of the Therapeutics Initiative, Former Editor-in-Chief of the Therapeutics Letter, Coordinating Editor of the Cochrane Hypertension Review Group, Academic Editor for PLoSONE, Benzodiazepine Information Coalition Medical Advisory Board
Barbara Connolly, PhD, Senior Admin, Benzo Warrior Community (Peer Support), Benzodiazepine Action Work Group Member
Marjorie DeWert, PhD, Benzodiazepine-Harmed Support Community Researcher, Benzodiazepine Action Work Group Member
DE Foster, BA, Benzo Free Podcast Host, Benzodiazepine Action Work Group Founding Member and Former Co-Chair, ASAM Clinical Practice Guideline on Benzodiazepine Tapering Patient Panel
Seema Gupta, MD, Board-Certified Ophthalmologist, ASAM Clinical Practice Guideline on Benzodiazepine Tapering Patient Panel
Mark Horowitz, MD, PhD, Visiting Lecturer in Psychopharmacology and Trainee Psychiatrist, Maudsley Deprescribing Guidelines Lead Author
Chris Magneto, ASAM Clinical Practice Guideline on Benzodiazepine Tapering Patient Panel
Jacob D. Ressler, MSW, LSW, PhD Candidate, Counselor and Recovery Coach, Head Moderator of the Benzo Recovery Community on Reddit [r/benzorecovery] (Peer Support), Benzodiazepine Action Work Group Member
Terri L. Schreiber, MPA, MBA, CEO of The Schreiber Research Group (TSRG), Benzodiazepine Action Work Group Founding Member
Carrie Silvernail, RN, BSN, ASAM Clinical Practice Guideline on Benzodiazepine Tapering Patient Panel
John Staight, BA, Benzodiazepine Action Work Group Founding Member, ASAM Clinical Practice Guideline on Benzodiazepine Tapering Patient Panel
Thanks to all who are bringing to light the nightmare that is protracted benzodiazapine withdrawal injury.
It is a serious, debilitating condition, and in my opinion, one that in most cases, could be totally avoidable.
Going on two years since cold turkey off 1 mg. clonazepam nightly…and still suffering!
I had NO idea I had become dependent on this sinister drug, until it was too late. Gaslighting by the prescriber and others in the medical community only added insult to injury & I got zero help from them. I was on my own to try and navigate this hellish nightmare of benzo withdrawal on my own.
It didn’t need to be this way
Patients pay dearly for the ignorance/arrogance of prescribers who, apparently are trained by the pharmaceutical companies. Informed consent is one way to prevent these heinous crimes against unwitting patients. Had I known the possible dangers of Clonazepam, I would never have agreed to take it! I didn’t know. Now I DO, but it’s too late for me. But it’s NOT TOO LATE TO SAVE OTHERS FROM THIS HELLISH NIGHTMARE THAT IS BENZODIAZAPINE WITHDRAWAL!!
Im sorry but their are people like myself who depend on taking a benzodiazepine medication for the rest of their lives just to be able to live a life when your diagnosed with crippling chronic panic agoraphobia Moderate recurrent major depression General anxiety disorder etc . Antidepressants are a joke and do not help, I take two Cymbalta and Paxil and have been on antidepressants 20 years same with benzos, I don’t abuse them I take them daily as prescribed, I was off my benzos for over a yr and I was not living just barely existing, So I went to my psychiatrist and had him put me back on my Valium which is the benzo that really does help me, no patient should be made to taper from any medications unless they are ready I do not think it’s appropriate for any professional to determine whether a patient is ready or not and you can tell the difference between addiction and physical dependency if your medical professional you should! That would be like a medical professional making me taper off my blood pressure pills because I and prescribed lisinopril and clonidine and metoprolol, as well for my high blood pressure and my high pulse diagnosis and health issues clonidine is known to be addictive as well so why is it that nobody talks about oh well people should taper from blood pressure medicines, it’s always either the opiates or benzodiazepines that seem to be targeted which is not fair because some people actually do need those or one of the those medications to just live!
Multiple comments were unable to be made on the document you provided. The comments document did not have to be so confusing. I have much wisdom and firsthand experience of Benzodiazepine dependence and discontinuation -and yet the opportunity to provide feedback was laborious and unnecessary.
I 100% support the Benzodiazepine Information Coalitions Top concerns and general concerns regarding The Clinical Practice Guideline on Benzodiazepine Tapering.
As it stands the draught version needs to align itself more from the Benzodiazepine Community comments plus absorb the Benzodiazepine Information Coalition’s suggested amendments.
💯% to all written. Here in NZ we dont even get a leaflet about the drugs now and it seems its up to individuals to look up their own medication info and also to check for interactions. Our drs should know more and instead of dishing out these meds like a sweet shop. There seems to be no questions asked about other health issues someone has, we have been left alone, over here anyway, with the reliance of coming off safely by our – thank god they exist -social media platforms. Advice on these are invaluable and its a shame more drs and prescribers havent joined to see what their actions are creating. Rest homes are another area I have an issue with. My late mothers meds were quite clearly stopped and with me going through this awful, lonely process, its very clear that a lot of her mood and symptoms in the rest home were related to her not being monitored to take meds she had been on for years. I have given my dr and our Mental Health providers so many resources and although I cant be certain she/they ‘overlooked’ reading them, I would be fairly certain they would be in the too hard to do file. We also have no support. I am fortunate to be financially secure so I can pay a lady to be a companion, something that has helped me overcome some of my fears but many are left alone without any follow up from their providers. We should be treated like having a brain injury where the necessary treatments and peer support is made available. NZ’s health system is poor and it appears this new epidemic, which I believe it will become, NZ will not be able to handle unless those prescribing follow stricter guidelines in their knowledge of what these meds do. They just dont want to listen or believe that people are going through such enormous suffering – thanks BIC and all the other places on Social Media for all your help and resources.
I agree with all you have said in the letter. I had trouble making sure that a comment was entered and still am not sure if it went through. I filled in the disclosure and used two 0’s for a general comment about BIND and the dangers of using many medications when the GABA receptors are not healed. When done , I got the message that I already had done the survey. I filled out another comment and the same thing happened. So, what did that mean? Also, it would have taken me weeks to comment on the whole document, I would have done it. I feel very discouraged and want to tell all of them to read all the cases on benzobuddies, read all that your organization has printed and lastly read and listen to anything that is put out by Dr. Jennifer Leigh who knows more than most doctors and scientists in this country. Dr. Leigh is the only one that I have found who helps those of us who spend many years in BIND. I was put on a benzo when I should not have been. It had nothing to do with anxiety, rather a horrendous reaction to prednisone. I am well educated, had no idea about the dangers of benzo pills and neither did my doctor.This is a disgrace. What are our med schools doing? Young and old doctors I have seen are clueless about the dangers of these drugs.
I’m very distraught my comment is not here looks like I forgot to do the disclaimer. Is there anyway to fix this?
If you forgot the disclaimer, go back and do it by clicking on #3 at this link (use the same name you used to leave a comment): https://www.asam.org/quality-care/clinical-guidelines/benzodiazepine-tapering
Or, email: tsafarian@asam.org
Thank you for the link, I have now done this. I hope to see my comment on here soon.
Hello BIC powerful comments, I hope that these along with all the comments they will have received will move things. I hope there will be a chance to review an updated document. Thank you so much for supporting benzo sufferers. I hope there will be formal continuing medical education for deprescribing. Doctors know how to prescribe but not the opposite.
I told my gp who is helping me of this and she replied that this is a real combat.
Status quo is not an option, hope this will have an international rebound.
France Pachebat
I started on klonipan in December 2008 under the guidance of a physician. I never reacted well to the medication and asked repeatedly to be taken off. This finally happened in May 2010, also under the guidance of this same physician. There was essentially no taper and this cold turkey withdrawal has caused years of protracted withdrawal and pain (BIND). It has been 14 years now that I have been dealing with the effects of taking a medication as prescribed. I am hopeful that with time my brain will continue to heal. Physicians and patients must know the full scope of what this medication can do.
My wife and I are seniors. I successfully tapered from Xanax at a daily dose of 1.5 mg which I had taken over a ten year period. I took me 18 months to complete with the help of the Ashton Manual, a prescribing nurse practitioner and compounding pharmacy.
My wife has been on Xanax for more than thirty years. I helped her taper from 6 mg per day to 4 mg per day over a two year period. She ultimately decided to stopped tapering and has stayed at that dose.
My wife had difficulty over the years getting prescriptions renewed when her prescribing doctors retired or moved to new practices. It was chaotic and frightening. So many doctors will not prescribe at all despite your need or history or want to reduce your dose by 25% every week thinking you can get to zero in a month.
I think you have done an excellent job on your review and setting forth meaningful comments on the draft
I’m a 74 year old physician, board certified in geriatric medicine, with not an insignificant background in the treatment of chemical dependency, having both published a review article on the topic and served as a staff member on an outpatient alcohol and drug center. I am a victim (no more hyperbolic than a someone experiencing a car accident through no fault of their own is a victim) of reckless benzodiazepine prescribing and inappropriately rapid tapering, resulting in 4 years of my life lost literally asleep until 4-5 pm daily and subsequently now 13.5 months of withdrawal symptoms, (thus far) such as completely disrupted sleep of no more than 0 to 4 hours daily, with a daily fight against daytime somnolence, as well as irritability, after a 3.5 week “inpatient” taper in an inpatient rehabilitation hospital (no credentials in chemical dependency). I was prescribed clonazepam now over 9 years ago, for severe migraines (not an indication) thought to be stress related to my career in academic medicine. The dose was gradually increased from 1 to 4 mg (the latter dose equivalent to 80 mg of diazepam).
I agree with all of the BIC recommended edits, but most especially for extremely slow tapers with tiny hyperbolic decreases in dosing, not using adjuvant or substitute agents, as these can only complicate the clinical picture, especially in older patients, and withdrawal can be more effectively accomplished with the benzodiazepine itself, deleting the terms adherence and non-adherence—-these terms diminish the dignity and powerof the patient in what should be shared decision-making in a very complicated decision, with little clear guidance, older patients should not be treated any differently than any other patients and not be forced to discontinue the benzodiazepines, and lastly, I am very distressed by the short time period that ASAM allowed for feedback. ASAM reopen the comment period and make the feedback mechanisms more simple.
Excellent response from BIC to a shockingly inadequate and dangerous document from ASAM. One of the most stunning facts is the FDA monies for this “project” going to ASAM. Of course,terms such as “adherence” and”adhere” are utilized . This is addiction medicine utilizing addiction language. Lack of full disclosure and informed consent, forced age-based medication withdrawal,”provider” guided weaning schedules, “counseling”,(where’s the mandated 12-step program???),regular re-evals for yet MORE medical “intervention” based on ignorant,reckless “provider”judgement…and on and on we go. The only thing missing from this train wreck is Court ordered benzo withdrawal at the “provider’s judgement”. So,SO thankful I’m off,and for the “Ashton Manual”,which helped save my life. God help anyone forced to use these ASAM “guidelines”.
I had already made a comment on the guidelines yesterday. I knew from your blogs here that multiple comments could be made at different times. When the questionnaire asked if I wanted to make another comment, I put, “no”, as I was done with that session and knew I could return to comment again. That was not the case. When I tried, just now, to add a second comment, it said I had already commented. So I have been closed out.
If I may, here is the second comment I would have made had they allowed me as I understood they would:
You, the team that have formed this initial draft, have made decisions that, to me at least, are very puzzling indeed.
You have accepted the responsibility from the FDA to create these guidelines.
In doing so, you have tacitly acknowledged that you are capable, competent, experienced, and responsible enough to take on this most consequential and life-impacting task. The lives of multiplied thousands, perhaps more, will be impacted, changed, by the decisions you make in these guidelines.
Yet, you, for some reason, have excluded those medical professionals with the actual first hand experience of these devastating drugs with consequences that simply cannot be imagined, because the side effects of these drugs and the taper and withdrawal from them are outside the experience of anyone who hasn’t taken them. Even the possibility that something this horrible could exist is a shock and difficult to grasp. But you have, with deliberate choice, excluded those medical professionals who, through the combination of their training and their experience can best guide the process of decision making in giving “guidelines” on this subject.
But now, here we are on the (arbitrarily chosen by you), last day feedback from the public can be given in response to the draft you have created.
This feedback has been available all along. The information, the testimonials, the videos, the articles, the books, the television exposure. You surely know of all of it. At least, you should, given the responsible position in which you find yourselves, the position you accepted.
So, why do you need public feedback? As I said, it has all already been said.
Is this an attempt on your part to show that you are making an effort in good faith to hear us? If so, why did you not make the obvious good faith effort in the beginning by choosing these experienced medical professionals which you in fact excluded? And if you weren’t interested in their guidance, on what basis are we to believe you are interested in ours?
To cut to the chase, it appears very much that this is all an effort to look compassionate and caring, when in fact you will do what you decide regardless. That is certainly what you did in excluding them.
Prove me wrong by making the changes they are requesting, based on the truth, and what is genuinely best for the patients.
I’m a 74 year old physician, board certified in geriatric medicine, and a victim (no more hyperbolic than a someone experiencing a car accident through no fault of their own is a victim) of reckless benzodiazepine prescribing and inappropriately rapid tapering, resulting in 4 years of my life lost literally asleep until 4-5 pm daily and subsequently 13.5 months of withdrawal symptoms, such as completely disrupted sleep of no more than 0 to 4 hours daily, with a daily fight against daytime somnolence, as well as irritability, after a 3.5 week taper
I agree with your comments. There is a large percentage of prescribed benzos users that develop a strong dependency on them, and I am one. It has taken me over three years to self-taper from 15 mg of valium to 4.75 mg. I had no help nor encouragement from my doctors; I did it on my own from information that I obtained from nonmedical sources on the internet. I learned about slow, logarithmic, micro-tapering to minimize withdrawal effects. I am a physical scientist and I have a very low regard for the psychiatric medical profession.
You hit the points perfectly. .
This group made this this not an easy task to put in comments.
Hope they got the message and understand the ramifications of these guidelines that were not good .
Thank you for all your hard work
Very thorough and well done! Thank you, all, for your time and effort into this incredibly important matter!
I agree with everything mentioned above. I was prescribed Klonopin long term and had no idea what it was doing to me except I just kept getting sicker and sicker. Unfortunately when I learned of the side effects of long term use I immediately checked myself into a rehab. 6 weeks later I left the hospital with disabling withdrawal symptoms and severe PTSD from too fast of a WD. I am one year post WD and still suffering. Yes the Dr who prescribed this drug to me (he said long term use was no problem at all) and Klonopin has ruined my life. I just pray everyday I will be whole again and at 67 I have now lost 5 years of my life to a benzodiazepine. Also, I feel I was completely alone in this entire process- it seems no MD understands the scope of symptoms that can and will arise from BZD. There has to be a whole new way to educate all medical professionals about BZD and I am very happy to see this BZD withdrawal guideline being updated with the correct procedures.
Everything you voiced concerns about are valid concerns. Having stopped cold turkey due to no available support after taking the prescribed dose for 30 days, reading the research you publish on your site and now the guidelines they want to impose to get people off this drug as fast as possible I’m inclined to believe (based on my own ongoing nightmare for more than two years) that they’ve finally acknowledged the fact that these drugs damage the brain. Temporary or permanent remains to be seen at least in my case, no protracted withdrawal should last two or more years. BIND (Benzodiazepine Induced Neurological Damage) is a more true and accurate term. This wasn’t even mentioned anywhere I saw in these guidelines. I tried to get help, every psychiatrist I saw told me I was crazy, suicidal, suffering from a “childhood trauma” that had never been addressed. I had someone with me to advocate that shot their diagnoses down, I’m grateful for that. If the ASAM don’t listen and amend these portions of their guidelines, it will leave a lot of patients wanting, confused and desperate.
They need to get this right, the first time. Thank all of you for all you do, you’re more appreciated than you know.
Excellent experienced comments
as someone that was trying to find help for four months and not one psychiatrist or doctor would help me.
I had to find help online on a benzo site. My doctor that prescribed these for me after the death of my husband wouldn’t even help me. Never told me how addictive they were. I lost over 30 pounds plus horrible withdrawals while trying to find somebody to help me.
Currently I’m on a water taper and I have been for six or seven months. AT
At seventy two years old I never expected to be doing this. This drug lorazepam has ruined my health and my life. not only did I lose my husband, but I also lost myself.
How long were you on them?
Sorry about your husband ..
I agree.
I believe everything mentioned was on point. I hope that ASAM reviews and accepts the notations. I feel like the only way our voices would be heard truly is when there are more people harmed. That’s very sad. Or if a member on the ASAM board were to go through the hell that so many have gone through. These drugs should be illegal. Thank you so much for letting us participate.