On November 12, 2024, the American Society of Addiction Medicine (ASAM) held a meeting with the patient advisory panel, which includes two members of our organization, to discuss the status of the benzodiazepine deprescribing guidelines. The meeting aimed to provide updates on changes implemented in response to the public commentary period on the draft guidance released earlier this year.
ASAM received thousands of comments from 511 contributors, marking the largest response they have ever received during a public comment period for draft guidance.
Although the changes are not yet final, we were encouraged to see that the potential updates presented were significantly better than the initial draft and that the patient voice was incorporated. While not perfect, the revisions represent meaningful progress. The proposed tapering rates are slower, protracted harm is expected to be included, and there is greater acknowledgment that most patients experiencing withdrawal are not addicted. Additionally, ASAM may advocate for pharmaceutical manufacturers to develop better formulations that facilitate safer tapering.
The next steps involve a vote by ASAM’s committee, followed by collaboration with other medical societies for co-sponsorship. The finalized guidelines are projected to be released in March or April 2025.
We want to thank everyone who took the time to provide comments during the draft open comment period, as your input was invaluable in shaping these important updates.
I’m very grateful that ASAM believed the input of those who shared their experiences, advice, etc. I am equally grateful that that they met with the representatives of BIC.
The changes are very good news. But at the risk of sounding ungrateful or of even becoming an irritant, I must interject that partial progress in this matter is like partial progress in repairing a leak on a ship. People will still drown.
The many problems of benzodiazepines, including prescribing, use, cessation, and the resulting physical and mental harms that can take place in each of these stages, comprise a range of specific topics far too broad to be addressed in one comment here.
I have too many physical limitations to scour yet again through the vast number of publications and videos I have read and watched, to find the exact comments of pharmacists, doctors, nurses, and patients to give precise verification of what I’m about to say. But if someone flags you down as you’re driving and tells you the bridge is out ahead of you, you likely wouldn’t demand precise verification to at least be cautious enough to keep your eyes open just in case you’ve been told the truth.
Over and over I have seen that some, many, prescription benzodiazepine users should never be completely taken off benzodiazepines, especially seniors. Yes, dementia is a very real possibility for those very benzodiazepine users. But I lived with a grandmother who had dementia. I also have experienced full blown akathisia since I last posted here. The symptoms of dementia I saw in my loved one and in others I have known were obviously much of the time distressing for the patient and sometimes nearly intolerable for loved ones to watch. But I can assure…anyone…that judging by the symptoms of mental pain they exhibited, as terrible as dementia is, it actually pales in comparison to the mind, body, and emotion breaking assault and shock of akathisia that I have seen on videos and that I myself have experienced.
Akathisia has many and varied descriptions. My experience was as though I was a puppet, ruled by emotions outside my control. Like a maddened rider on a horse the horrid akathisia lashes you, prods and kicks as you try, white-knuckled to just keep from being driven to madness or compelled against your very will to destruction. The tsunami of dread, fear, and the terrifying sense of doom overtakes your very being while you simultaneously feel a profound sense of displacement, of being lost, lost from stability and security, both now and in the foreseeable future, and lost in the sense that, like the ground moving beneath you in an earthquake, you have no place to rest your very self. Indeed, your very self is in emotional vertigo, hurtling and grasping in the vortex of the akathisia assault.
This destructive akathisia that I felt happened after I was tapered too quickly off the clonazepam I have been prescribed for more than three decades.
I also have severe and frequent symptoms of seizure-like contractions and/or “freezing” of the muscles in my body.
It is little wonder that one of the sadistic tortures of totalitarian states of the last century was to induce the chemical dependency of benzodiazepines in prisoners, only to withdraw the drugs for the torture of withdrawal.
Please. The human mind and body, once bound in the grip of benzodiazepine chemical dependency, may, MAY, be able to taper and eventually discontinue the drug. But the rate of that taper and the possibility of cessation will ultimately not be dictated by someone reading a chart, but by the individual body and mind of the person who is actually living with benzodiazepine chemical dependency and the resulting symptoms.
I do remember soft spoken and kindly pharmacist Ivan Jourdain, R. Ph., speaking on an internet video about benzodiazepines. He spoke very specifically about the problems of benzodiazepine discontinuance. He said that in his thirty four years [of pharmaceutical work] only two, maybe three individuals using benzodiazepines had actually successfully discontinued them. He said that he knew one lady who tapered to 1/4 of a .5 mg tablet every three days (!), but if she didn’t take that amount every three days, she experienced symptoms. Again , it is the body of the patient that ultimately makes the rules about time and amount of withdrawal.
Please hear us, again. Please hear us fully.
Thank you.
Sincerely,
D. Thomas
That would be so encouraging for most who are suffering horribly from Benzos.
I would like more information on this. Does one join? If so, how. Can you give me more information? Thanks
I don’t want off mine. I have Epilepsy and severe anxiety/ panic attacks. I almost had a stroke when I was a abruptly taken off in 2008 and couldn’t handle it. After 6 to 7 months I was back on them. I’m dangerous without them.
Thank you.
Thank you for giving a voice to us. My experience with trying to slowly and safely taper and hopefully go off CLONAZEPAM daily for 12 years. I was on it for good reason. C-PTSD. Many many traumas all my life.
But my psychiatrist recommended a taper I felt was too fast. Once a week cutting down by 1/4 pill! I told him about the Ashton Method which gives specific schedules for slow tapers. He then YELLED AT ME! Berating me in his office for daring to mention another Dr’s recommendations! He said, “Do you see all these diplomas on my walls? Do you think I don’t know best how to taper from Clonazepam? What an insult for you to come into my office and bring a schedule from some other Dr!…” I have severe anxiety as well as the many traumas causing C-PTSD. He knows this! I started crying and he showed no empathy. A real egotistical Dr with a God Complex! I’m stuck with him for multiple reasons. Insurance etc.
I will do my taper in the future without telling this Dr that I am doing so. I won’t be able to switch to Diazepam like the Ashton Method recommends because he won’t give it to me. And neither will another Dr “interfere”. So I’d have to taper without the Diazepam.
Not sure if that’s a big deal but it that’s what I’m stuck with. Even the Ashton Manual says tapering off Clonazepam without switching to Diazepam is possible. But how much harder is it to do that? More adverse symptoms?
***Any input would be appreciated!***
The Moderators have my e-mail. Maybe you can send me some info about this? Or direct me to info about how much more I might suffer withdrawing from CLONAZEPAM using the Ashton Method without the switch to Diazepam? (That says it CAN be done. Just not as much help with the withdrawal symptoms.) I want to know what I’m to expect. How much harder and in what ways without Diazepam switch? You guys are the only resource I have. Except for an ego-driven, “fragile” maybe narcissistic Dr who has always prescribed my Clonazepam starting 12 years ago. Who never told me of the dangers of longterm use. And wants me to taper and withdraw on an accelerated schedule I will not try. I do know better than he does!
I want to start to taper soon. Help is appreciated.
I have bounced between .5 and 2 mg Clonazepam for over 25yrs with several failed tapering attempts. The trouble really hit maxing me out at 3.5mg. I am about to hit my next taper at .29mg, and thriving! IF, you can afford and have access to a compounding pharmacy,
and your Doc will prescribe, highly recommend.
I’d switch to Valium gradually and proportionally across 4-6 weeks. This isn’t a taper or reduction at all, just so your body can adjust properly.
Then start your diazepam taper, it’s certainly the best one to use. I did 6 month taper after 2 years of 3-4 uses a week, and that was certainly far too fast and I had a seizure towards the end.
I can’t say as for how long to taper, I’d make it a year minimum, you have to get into a long term mindset, routine, coping mechanisms, and an extremely accurate method for dosage.
I have experienced the same type of treatment from doctors. They have no idea how hard I’ve fought and how much I’ve suffered. Finally I have found a good doctor who is all about tapering at a pace without so much suffering. Right now I am taking a taper break until I stabilize enough to continue. But I have made much progress. The Ashton Manual (you can find a link at benzoinfo.com) has many charts showing good tapering plans. But you can go as slow as you need to prevent severe suffering. The manual has really helped me. I pray you find the right doctor, if your current doctor continues to be like he has been. And I pray that you are free from benzos and withdrawal symptoms.
I left a long comment but forgot to add a huge permanent benzo relate damage.. insomnia… with damage to the GABA I have nothing to help me wind down at night . I stay up till 5am or so and when my body n brain finally fall asleep I sleep stright through for 9 hours . Which means I sleep till 2pm sometimes and so much of my day is gone. GABA and CNS issues are the domino effect of these medications AGAIN ONLY TAKEN AS PERSCRIBED and I was the one that realised I must come off them . The sad thing is many of us started these meds before drug forums and cell phones so it was the wild west.
Good word and observation!!
I am so sorry I missed that opportunity to comment to ASAM .. 6 years of clonazepam on and off taken as directed only took years n years for my brain to recalibrate afterward . Withdraw was hell n frightning . And while on them, ( I was and am disabled w a neurological disorder ) but the clonazepam destroyed who I was , yet to the outside world I don’t think they knew how bad off I was. I was co dependant and everything in my life from what i wore to how i decorated my rental was 100% no me!!! I was like a functioning alcoholic. ( no i dont drink) I have photos n examples of how it changed me and my surroundings while on them and how hard it was to find myself after I was off …but the final word is … now that I have been off them for many years my GABA is so damaged my voice will go out 2 octaves if I get even a tad excited and if someone catches me off guard I jump like a cartoon character. My down regulator neuro transmitter GABA is damaged . I have 3 college degrees and I know longer feel in control and hate it. I will add that at one point in 2010 after years of taking amitriptyline for nerve pain and clonazepam for sleep due to the pain I gradually started dystonia from the amitriptyline and after a slow month or so since the first tick emerged, it blew up so they slowly ( but it was still not slow enough n was hell) took me off the amitriptyline, and threw me off the clonazepam because they needed to switch to Valium to stop the ticks. So I was crashing off clonazepam and amitriptyline and thrown on Valium and lost all muscle control and could not walk or hold up my head or speak because the tongue is a muscle, I was 5’7 and went down to 103 lbs because food made me puke , they had to put towels under the doors so I could not smell food or I would want to vomit .. it was all under IN RARE CASES CALL A DR IF YOU WANT TO VOMIT , LOOSE MUSCLE STRENGTH ETC IT WAS ALL UNDER RARE SIDE EFFECTS UNDER VALIUM but the Dr s could not figure out what was wrong…. n the neurologist who was one of the Dr writting the scripts said I NEED TO GIVE YOU A PERSCRIPTION FOR HAGEN DAZ ICE CREAM ..U NEED TO GAIN WEIGHT so that’s just the high lights but I have permeate damage to my CNS because of the drugs and nerve cross talk and alodynia I think it is. I wish I could add my 2 cents .. I am dealing w a mom w dementia right now and trying to find a cure for my illness and I must have missed the email from benzoinfo . To all my siblings and cousins and mentors here, who have come to this amazing God send of a site .. I say to you… listen to your body and stay away from stress and neg people, and be greatful for the little things and the generous people like we have here running benzoinfo . Love HAWKINS
it’s really hard to find a doctor who understands the hardship of long term use and withdrawal. I’m thankful for this information please keep spreading awareness.
I put in my two cents after some frustration with their process. My one hope is that some attention was given to all of us who are in BIND and have had little help from the medical profession. Thank goodness for people like Dr. Jennifer Leigh ( psychologist) who has shared her medical and personal knowledge to help thousands of people with their withdrawals. We need many more people like her!
I just want to thank everyone. It takes very hard work, over time to make the differences we want to see. Any progress is awesome. Hopefully, many people in the future will never have to know the brutal and torturous withdrawal that many of us have had to persevere.
That’s great! Too bad the GP’s won’t use it because they think they know everything and they don’t care. Sorry, I feel terrible every day.
I know what you mean about the Arrogant attitudes of doctors in general. One hopeful thing perhaps that I want to say is that I just saw my primary doctor for something related to my blood pressure but we spent the bulk of the visit with me educating him about b i n d. I told him I was suffering from that and explained it he actually noted it in my chart. He admitted he had never heard of it and I said nobody has that’s the problem. I continued to inform him saying NIH finally did a study to confirm What patients have been reporting all along. They’ve just thought the patients were drug seeking. But now even though the researchers and NIH know it exists, since it’s new they have no idea what to do about it yet. He listened and did not give me any lip if you know what I mean. I was thinking also that if he was being a jerk I would point out how big a demand there is for doctors who know how to treat this. Demand equals big money in business terms. I’m going to keep telling every doctor I see about it.
Did they mention anything about elderly being left alone .
Congratulations all around! Progress! Though the proposed changes are not perfect, the changes reflect important improvements due to the efforts of all of us. Well done!
Glad to hear this. One piece that I kept hammering on was, with respect to including patients in the conversations and decision making around benzos, this should be the same no matter a patient’s age. Whether 25 or 75, ALL patients deserve a seat at that table. The original language for seniors was more about deciding for them instead of with them, if I recall correctly. Hoping this has changed.
Thank you so much to everyone involved. Your commitment and hard work do not go unnoticed.
I’m so happy that I was able to help even if slightly I just want to be heard and want to be tapered slowly. Since I found you guys, I’ve been more firm with my doctors and make it clear that it may have been THEIR choice to put me on this medication when I was 9, and now I’m a 32 year old woman… a woman who has suffered ALOT of trauma through out my life, I was raped when I was 15, when I was 18 I was kidnapped and held in chains for a month and 3 days, and they are supposed to be the people who help me be able to cope. I used to be so scared to speak my mind. Not anymore thanks to you guys! You’re an inspiration to all of us! Thank you! I honestly don’t know how I would be able to maintain a job as a nurse, my toiletry pantry or my household if I didn’t have my medication. I want to try though and I just really need the correct doctor for the job. If you guys happen to know a perscriber in West Virginia or even Ohio, or Pennsylvania that would be great! I’m very desperate and sick of having seizures and not being able to remember stuff and it’s starting to affect my speech a little and my movements.
This is great news .. I’ve been in a whirlwind of withdrawal .. so glad you’re doing this.